......and many apologies for the long absence. It's been a busy few weeks.
So, where was I? Well, I'm still alive, which is a start! Just kidding - lots of people find that hard to laugh at, but my dark humour gene has well and truly kicked in.
After a few days of feeling fragile and annoyed post chemo, I managed to get over it, pick myself up and start getting back to normal. I've done a bit of work, a couple of auctions, and generally managed to keep myself busy. Oh, and a lot of Christmas shopping! Nothing's wrapped of course, but Christmas is still ages away, right?
Heart wise, I'm okay. We upped the dose of Ace Inhibitors after 2 weeks which seems to have made me feel a LOT better despite having a second dose of chemo, which I'm "pleased" to say they let me have on 10th December.
Well, I say pleased. That's not really the right word, but at least my heart's ejection fraction had improved enough (to 56%) to let me have it.
The chemo session itself was fine - the port was really quick at getting the stuff in, and we had some new anti-emetics to try. Fortunately my chemo nurse made sure I had the full litre of fluid via the drip. Just as well - I was as sick as a very very very sick thing.
Brutal is the best way I can think of to describe it - sick every hour for nearly 24hrs was horrid, and my throat still hasn't recovered.
Still, despite being a bit tired I am over it now, but dreading the next session on the 2nd. At least I get Christmas and New Year to myself though - lots of positives.
Having spoken to Dr Evil again today, we are trying yet another new anti-emetic which I've got to pick up this week. I'm to take one the day before, one on the day and one the day after, so whilst I can't remember the name I'm hoping it is strong stuff! If not I will be pushing to be re-admitted and put on a drip.
So, what else? Oh yes, I'm a bit bald. Not entirely yet, but I had my head shaved last week as the hair loss was unbearable, particularly as I had to hoover my clothes, pillow cases, chairs..... you get the gist. I even went for a walk and saw a clump blow past me.....
I also have two wigs. Yes, two. A bit greedy, but necessary for my sanity and vanity. I've been wearing a headscarfy thing and I do look a bit like a refugee wearing it. I won't be able to wear the wig when I'm cooking, due to fear or melting (just like the wicked witch of the west!) but for going out and about, it's essential.
The children absolutely love my wigs, which is a huge confidence boost. Even the smallest has coined the phrase "mummy's new hair"...... their enthusiasm is infectious.
Anyway, I have waffled enough for now, and I'm starving, which when I'm not throwing up or being nauseous appears to be a regular thing. At least the massive carb cravings have eased off - apparently carbs give me indigestion, but it's hard not to eat them when all I can think about is cheesy Doritos......
Tuesday 18 December 2012
Tuesday 4 December 2012
Dear Mum and Dad
I don't know if you'll ever read this.
I do know that you stumbled across my blog 10days or so ago, typically when I had just posted information that was new news to you and upsetting to say the least. That was the exact opposite of how I wanted you to find out about my "heart problem".
"Heart problem" is in inverted commas because were it not for having to have Chemo, it really wouldn't be an issue. 50% Ejection Fraction in the left ventricle is the lower end of normal, but as we know. it is something I may have lived with all my life thus far and until cancer turned up, I was able to function perfectly adequately. Assuming that the new medication improves it, who knows how much I might actually speed up - I'm not sure that anyone would be able to keep up with me, but even so....the possibilities are endless!
As you gathered, I was pretty mortified to know that you found the blog in the first place. I know, I know, I'm writing in a public place therefore it was perhaps inevitable, but I hope that you can forgive me for doing it.
I have tried to explain the release that it gives me, to be able to write in such a way and in such a place as a public blog. It isn't that I ever expect anyone to read it and goodness knows, it certainly isn't a masterpiece, but part of me hopes that if anyone with cancer ever stumbles upon it, my thoughts and random ramblings it might give them some comfort and maybe even help them through what is a pretty tough and horrible time. Certainly I read a few other blogs and the sharing of thoughts, laughter, pain and determination is an absolute inspiration to me.
I thought about deleting this blog altogether, about moving it to another site, about just making it private, but in the end, and after a huge amount of deliberation I have decided to reactivate it and keep it in the public domain. I am not ashamed of anything I have written, and although I hope you don't read it, I do understand that in many ways if you do read it, it might help to give you an insight into what I am going through.
As to why I don't tell you every morsel of how I'm feeling, well, sharing my crazy thoughts with the internet is as I said above, a release. It's a way for me to get out all the words and emotions that bottle up in my head and I don't necessarily want to say to people face to face. I know that my husband reads it, and a few of my friends, but they don't feel the need to discuss every point with me and that's the way I like it.
A lot of people read this blog that I don't know. That's okay too. In fact, it's kind of the whole point isn't it? At this point in time, I've had nearly 10,000 page views - not that I'm counting, but if something I have written has helped even one person, then I'll be over the moon. Perhaps it is a bit of an ego boost? I don't know, but even if it is, perhaps I deserve it.
I hope beyond hope that you aren't upset by me not sharing everything, but yes, I do want to protect you from some of what I am going through.
It isn't that I don't think you can "handle it", or cope with it.
It isn't that I don't love you, or don't want to share my life with you.
What then?
To be frank, our relationship is precious and I don't want cancer and my treatment to be the focal point of every conversation that we have. No, I'm not always fine, but what will be will be and I just have to get on with it. Perhaps I am trying to stick my head in the sand, but I have to live with all this on a day to day basis, and during the conversations and visits we have, I don't want cancer and related conversations to bloody ruin everything.
That's one of the nicest things about having two small people in my life. They are, for the most part, oblivious that I am "ill". Again, with the inverted commas. This "illness" is, as far as I'm concerned a very temporary thing. I am damn well going to beat it and start living my life normally again and in a way, in my conversations with you I'm already doing that.
No, I don't see you on a regular basis which is horrible, but again, what is, is and unless you move, or the divide between Gloucestershire and Norfolk closes up there's nothing we can do about it, except in the meantime try and have normal lives.
I don't want it to be all about me, hence I want to talk about what's going on in your lives, not just about me and I hope you can forgive me for it.
Never ever doubt how much I love you and how much I rely on your support, even though you don't perhaps feel like you are doing much. I know that you are there for me and always will be. Never underestimate how much strength this gives me.
Christmas is but 3 weeks away (or so I'm told), and I can't wait to actually spend some proper time with you. Until then, I am okay, really, albeit a bit frayed round the edges, but I'll get through, I promise.
And, if you insist, I'll promise not to do any washing up whilst you're here over the festive period and I'll even leave you all the housework too.
R xx
I do know that you stumbled across my blog 10days or so ago, typically when I had just posted information that was new news to you and upsetting to say the least. That was the exact opposite of how I wanted you to find out about my "heart problem".
"Heart problem" is in inverted commas because were it not for having to have Chemo, it really wouldn't be an issue. 50% Ejection Fraction in the left ventricle is the lower end of normal, but as we know. it is something I may have lived with all my life thus far and until cancer turned up, I was able to function perfectly adequately. Assuming that the new medication improves it, who knows how much I might actually speed up - I'm not sure that anyone would be able to keep up with me, but even so....the possibilities are endless!
As you gathered, I was pretty mortified to know that you found the blog in the first place. I know, I know, I'm writing in a public place therefore it was perhaps inevitable, but I hope that you can forgive me for doing it.
I have tried to explain the release that it gives me, to be able to write in such a way and in such a place as a public blog. It isn't that I ever expect anyone to read it and goodness knows, it certainly isn't a masterpiece, but part of me hopes that if anyone with cancer ever stumbles upon it, my thoughts and random ramblings it might give them some comfort and maybe even help them through what is a pretty tough and horrible time. Certainly I read a few other blogs and the sharing of thoughts, laughter, pain and determination is an absolute inspiration to me.
I thought about deleting this blog altogether, about moving it to another site, about just making it private, but in the end, and after a huge amount of deliberation I have decided to reactivate it and keep it in the public domain. I am not ashamed of anything I have written, and although I hope you don't read it, I do understand that in many ways if you do read it, it might help to give you an insight into what I am going through.
As to why I don't tell you every morsel of how I'm feeling, well, sharing my crazy thoughts with the internet is as I said above, a release. It's a way for me to get out all the words and emotions that bottle up in my head and I don't necessarily want to say to people face to face. I know that my husband reads it, and a few of my friends, but they don't feel the need to discuss every point with me and that's the way I like it.
A lot of people read this blog that I don't know. That's okay too. In fact, it's kind of the whole point isn't it? At this point in time, I've had nearly 10,000 page views - not that I'm counting, but if something I have written has helped even one person, then I'll be over the moon. Perhaps it is a bit of an ego boost? I don't know, but even if it is, perhaps I deserve it.
I hope beyond hope that you aren't upset by me not sharing everything, but yes, I do want to protect you from some of what I am going through.
It isn't that I don't think you can "handle it", or cope with it.
It isn't that I don't love you, or don't want to share my life with you.
What then?
To be frank, our relationship is precious and I don't want cancer and my treatment to be the focal point of every conversation that we have. No, I'm not always fine, but what will be will be and I just have to get on with it. Perhaps I am trying to stick my head in the sand, but I have to live with all this on a day to day basis, and during the conversations and visits we have, I don't want cancer and related conversations to bloody ruin everything.
That's one of the nicest things about having two small people in my life. They are, for the most part, oblivious that I am "ill". Again, with the inverted commas. This "illness" is, as far as I'm concerned a very temporary thing. I am damn well going to beat it and start living my life normally again and in a way, in my conversations with you I'm already doing that.
No, I don't see you on a regular basis which is horrible, but again, what is, is and unless you move, or the divide between Gloucestershire and Norfolk closes up there's nothing we can do about it, except in the meantime try and have normal lives.
I don't want it to be all about me, hence I want to talk about what's going on in your lives, not just about me and I hope you can forgive me for it.
Never ever doubt how much I love you and how much I rely on your support, even though you don't perhaps feel like you are doing much. I know that you are there for me and always will be. Never underestimate how much strength this gives me.
Christmas is but 3 weeks away (or so I'm told), and I can't wait to actually spend some proper time with you. Until then, I am okay, really, albeit a bit frayed round the edges, but I'll get through, I promise.
And, if you insist, I'll promise not to do any washing up whilst you're here over the festive period and I'll even leave you all the housework too.
R xx
Thursday 22 November 2012
What becomes of the broken hearted?
Okay, so possibly a slightly melodramatic post title.
However, I have had more bad news from my Oncologist.
Apparently, my left ventricle doesn't work as well as it should for someone of my age... 50% plays 65%. This is an issue, as they now don't want to give me any more FEC, and want to switch straight to Taxotere. At this stage, they also aren't sure whether they are going to be able to give me Herceptin. If they do, it certainly won't be at the same time as the Taxotere, which isn't an issue except for delaying completion of treatment, which I can live with. Ha ha.
Permission to swear? Loudly?
At the moment, other than starting ACE inhibitors immediately, which was yesterday, I really don't know where I stand and what the hell is going on.
It doesn't sound like they looked at my heart scan before giving me my first FEC, which is rather irritating, as they might well not have given it to me if they had - apparently it isn't good for someone with a "heart condition" which, apparently, I have.
So. Heart medication has started and I'm having a chat through with the consultant on Monday and will be having another heart scan to ascertain whether any damage has been done. I will admit to being rather fricked off and if the heart function has decreased I will want some pretty clever answers otherwise the poo may hit the proverbial.
On the plus side, the telling off I gave the GP's receptionist on Tuesday has definitely sunk in as they were extremely polite and efficient yesterday when organising my new medication.....
However, I have had more bad news from my Oncologist.
Apparently, my left ventricle doesn't work as well as it should for someone of my age... 50% plays 65%. This is an issue, as they now don't want to give me any more FEC, and want to switch straight to Taxotere. At this stage, they also aren't sure whether they are going to be able to give me Herceptin. If they do, it certainly won't be at the same time as the Taxotere, which isn't an issue except for delaying completion of treatment, which I can live with. Ha ha.
Permission to swear? Loudly?
At the moment, other than starting ACE inhibitors immediately, which was yesterday, I really don't know where I stand and what the hell is going on.
It doesn't sound like they looked at my heart scan before giving me my first FEC, which is rather irritating, as they might well not have given it to me if they had - apparently it isn't good for someone with a "heart condition" which, apparently, I have.
So. Heart medication has started and I'm having a chat through with the consultant on Monday and will be having another heart scan to ascertain whether any damage has been done. I will admit to being rather fricked off and if the heart function has decreased I will want some pretty clever answers otherwise the poo may hit the proverbial.
On the plus side, the telling off I gave the GP's receptionist on Tuesday has definitely sunk in as they were extremely polite and efficient yesterday when organising my new medication.....
1 down, 5 to go....
Port fitting done, and first chemo done. Phew.
Monday and, let's face it Tuesday, and most of Wednesday are days I would like to be able to forget in a big hurry.
Monday started badly, as despite having had my first chemo delayed to incorporate a port fitting so we could use the port the same day, the rather lovely (and I do actually mean lovely) sister on the ward who was meant to admit me, was horrified that I was going to go through everything on the same day and was adamant that I shouldn't go through with everything - I think she even went to "have words with" my oncologist.
Alarm bells should have rung at this point, but in my normal stubborn way, I insisted on doing the whole lot, as I absolutely had to get home before the children arrived back from nursery so I could help my husband. (Remember this point later on....)
Having had chemo delayed I was adamant that I ought to do everything as planned, despite the advice from the sister in charge of the ward. They had no space for me anyway, so after a quick antiseptic shower (which apparently I should have had at home but no one gave me the stuff) I was dispatched to the day patient unit for a bed so I could have my port fitting at 10 ish, and my chemo was then booked for 2pm. On the basis that this was an improvement from the timescales I had been given (i.e. wait for a space all day for both procedures) I was quite happy and toddled off to the DPU.
The DPU is lovely, but the poor nurses had no idea what to do with me as they never have patients in there for port fittings, so they didn't know if I could have a cup of tea or whether I should be nil by mouth.....we didn't have long to wait though as I was soon called up to Interventional Radiology for the port fitting.
Rather embarrassingly, I wasn't allowed to walk up and I had to have a ride on the bed - the porter was adamant, as were the nurses.... although the porter did rather admit that I looked healthy enough to walk, and was definitely too well to be having chemo later.......appearances can be deceiving.....
So, the port fitting.
Went fine, but was quite unpleasant and not an experience I would like to have again. I do admit though, that it has got to come out at some point and teleportation isn't an option.....
Once we got enough local anaesthetic in it was more comfortable and only took about 45mins. The consultant and team were fab, and I was made a rather wonderful cup of tea afterwards by one of the radiologists who wouldn't let me be spirited away until I had finished it! They even shared their biscuit supply, so I've promised to take a cake in when I have the port removed.
So, feeling a bit uncomfortable I'm wheeled back down to the DPU where I just about have enough time for a slice and a half of toast and to get dressed (and for a friend to be turned away from visiting by the guards at the door) before I'm wheeled round, in a chair this time to the Chemo dept for my first session.
The Chemo nurse, Richard, who takes me in is lovely, and as I'm starting on a cocktail of 3 drugs, has to sit with me the whole time putting them in. We had a good long chat about all the side effects I might experience, including red urine (some of the Chemo is red), and after a bit of a cry from me (it has been a long day), we start.
Despite my misgivings and fear about having the port put in, seeing 4 or 5 people around me with their arms soaking in water to try and get their veins raised enough for a drip, I am extremely relieved that I have been given one. All I can feel is slight pressure as the liquids go in, and conversation soon takes my mind off it.
As well as the chemo, I'm given lots of anti-emetics via the port, which should last into the night, but I also have a list of pills to take when I get home which WILL, I'm told, stop me from being sick, which is good news.
My Onc Dr popped in for a brief chat and he seemed on reasonable form, other than calling me Tracey....
So, after about 2 hrs we are finished, and I sit with my bags and pile of pills ready to be picked up and go home. I bumped into a lady that I met when I had my node clearance - she's waiting for her first session, and we exchange notes. She has been a lot more sore than me post op, but seems on relatively good form.
I've got my next two sessions booked: 10th December and 2nd January, so on the up side Christmas and New Year won't be a total write off...
By the time I get home, I'm quite shattered but the children are due home any second, so I have time for a quick cuppa. Friends of ours have kindly offered to stay the first night and help, as I'm not allowed to lift anything heavy for the first day or so post port fitting (not worth me rushing home to be helpful then was it!) and my husband shouldn't be lifting the children either...
I feel okay for a while, but then get terrible indigestion and have to lie down. I take one dose of pills and keep my fingers crossed for a bit. Fortunately, the children go to bed quite quickly so they don't see me go downhill.
I was in so much pain from the indigestion that I rang the Acute Onc Team who are 24/7 and asked whether it's a normal thing. It isn't, but they are quite happy that it could be normal for me and advise me to take some Gaviscon and my next lot of anti-emetics.
So, I downed the Gaviscon and was sick within 30 seconds. Bugger. Just as well I got that toast for lunch....
On the plus side, my stomach was much less sore afterwards.
I won't bore you with all the details, but suffice it to say that my first night was miserable and I was ill every 2 hrs until I stopped drinking, at which point I managed to sleep and not be sick... not ideal, but it got me through. I eventually worked out that one of the pills I have been prescribed makes me sick - 2/3 times withing 15minutes, so under advice from the Acute Onc Team we decide to give that one a miss. I can't take the steroid I've been given as it has to be taken with food.....(whoops).....but can take one other which only makes me sick after 2hrs, which is an improvement on 15mins...
Tuesday was similarly awful and after a chat with the AOT I went to the GP's for an anti-emetic jab. Getting through the receptionists was hard work, but lets just say that they have had some early training on how to treat cancer patients and have been reminded that if they don't know what they can prescribe for sickness, they have specialists on hand called Doctors who do.....
Anti emetic jabs hurt like hell, but it worked and I got some sleep when I got home and managed to keep a couple of dry biscuits down.
I can't remember much of Tuesday in honesty, except sleeping in various positions, and eventually being able to drink. I was less sick towards the evening/night, that I can remember, and when the eldest child was upset overnight, I even managed to be a parent and cuddled up with her in her bed. I'm not sure who gave more comfort - me or her.
I have been re-reading parts of my blog, and I think I'm going to need every ounce of bravado that I have alluded to thus far to get through. It will all be worth it but my God I'm scared.
Monday and, let's face it Tuesday, and most of Wednesday are days I would like to be able to forget in a big hurry.
Monday started badly, as despite having had my first chemo delayed to incorporate a port fitting so we could use the port the same day, the rather lovely (and I do actually mean lovely) sister on the ward who was meant to admit me, was horrified that I was going to go through everything on the same day and was adamant that I shouldn't go through with everything - I think she even went to "have words with" my oncologist.
Alarm bells should have rung at this point, but in my normal stubborn way, I insisted on doing the whole lot, as I absolutely had to get home before the children arrived back from nursery so I could help my husband. (Remember this point later on....)
Having had chemo delayed I was adamant that I ought to do everything as planned, despite the advice from the sister in charge of the ward. They had no space for me anyway, so after a quick antiseptic shower (which apparently I should have had at home but no one gave me the stuff) I was dispatched to the day patient unit for a bed so I could have my port fitting at 10 ish, and my chemo was then booked for 2pm. On the basis that this was an improvement from the timescales I had been given (i.e. wait for a space all day for both procedures) I was quite happy and toddled off to the DPU.
The DPU is lovely, but the poor nurses had no idea what to do with me as they never have patients in there for port fittings, so they didn't know if I could have a cup of tea or whether I should be nil by mouth.....we didn't have long to wait though as I was soon called up to Interventional Radiology for the port fitting.
Rather embarrassingly, I wasn't allowed to walk up and I had to have a ride on the bed - the porter was adamant, as were the nurses.... although the porter did rather admit that I looked healthy enough to walk, and was definitely too well to be having chemo later.......appearances can be deceiving.....
So, the port fitting.
Went fine, but was quite unpleasant and not an experience I would like to have again. I do admit though, that it has got to come out at some point and teleportation isn't an option.....
Once we got enough local anaesthetic in it was more comfortable and only took about 45mins. The consultant and team were fab, and I was made a rather wonderful cup of tea afterwards by one of the radiologists who wouldn't let me be spirited away until I had finished it! They even shared their biscuit supply, so I've promised to take a cake in when I have the port removed.
So, feeling a bit uncomfortable I'm wheeled back down to the DPU where I just about have enough time for a slice and a half of toast and to get dressed (and for a friend to be turned away from visiting by the guards at the door) before I'm wheeled round, in a chair this time to the Chemo dept for my first session.
The Chemo nurse, Richard, who takes me in is lovely, and as I'm starting on a cocktail of 3 drugs, has to sit with me the whole time putting them in. We had a good long chat about all the side effects I might experience, including red urine (some of the Chemo is red), and after a bit of a cry from me (it has been a long day), we start.
Despite my misgivings and fear about having the port put in, seeing 4 or 5 people around me with their arms soaking in water to try and get their veins raised enough for a drip, I am extremely relieved that I have been given one. All I can feel is slight pressure as the liquids go in, and conversation soon takes my mind off it.
As well as the chemo, I'm given lots of anti-emetics via the port, which should last into the night, but I also have a list of pills to take when I get home which WILL, I'm told, stop me from being sick, which is good news.
My Onc Dr popped in for a brief chat and he seemed on reasonable form, other than calling me Tracey....
So, after about 2 hrs we are finished, and I sit with my bags and pile of pills ready to be picked up and go home. I bumped into a lady that I met when I had my node clearance - she's waiting for her first session, and we exchange notes. She has been a lot more sore than me post op, but seems on relatively good form.
I've got my next two sessions booked: 10th December and 2nd January, so on the up side Christmas and New Year won't be a total write off...
By the time I get home, I'm quite shattered but the children are due home any second, so I have time for a quick cuppa. Friends of ours have kindly offered to stay the first night and help, as I'm not allowed to lift anything heavy for the first day or so post port fitting (not worth me rushing home to be helpful then was it!) and my husband shouldn't be lifting the children either...
I feel okay for a while, but then get terrible indigestion and have to lie down. I take one dose of pills and keep my fingers crossed for a bit. Fortunately, the children go to bed quite quickly so they don't see me go downhill.
I was in so much pain from the indigestion that I rang the Acute Onc Team who are 24/7 and asked whether it's a normal thing. It isn't, but they are quite happy that it could be normal for me and advise me to take some Gaviscon and my next lot of anti-emetics.
So, I downed the Gaviscon and was sick within 30 seconds. Bugger. Just as well I got that toast for lunch....
On the plus side, my stomach was much less sore afterwards.
I won't bore you with all the details, but suffice it to say that my first night was miserable and I was ill every 2 hrs until I stopped drinking, at which point I managed to sleep and not be sick... not ideal, but it got me through. I eventually worked out that one of the pills I have been prescribed makes me sick - 2/3 times withing 15minutes, so under advice from the Acute Onc Team we decide to give that one a miss. I can't take the steroid I've been given as it has to be taken with food.....(whoops).....but can take one other which only makes me sick after 2hrs, which is an improvement on 15mins...
Tuesday was similarly awful and after a chat with the AOT I went to the GP's for an anti-emetic jab. Getting through the receptionists was hard work, but lets just say that they have had some early training on how to treat cancer patients and have been reminded that if they don't know what they can prescribe for sickness, they have specialists on hand called Doctors who do.....
Anti emetic jabs hurt like hell, but it worked and I got some sleep when I got home and managed to keep a couple of dry biscuits down.
I can't remember much of Tuesday in honesty, except sleeping in various positions, and eventually being able to drink. I was less sick towards the evening/night, that I can remember, and when the eldest child was upset overnight, I even managed to be a parent and cuddled up with her in her bed. I'm not sure who gave more comfort - me or her.
I have been re-reading parts of my blog, and I think I'm going to need every ounce of bravado that I have alluded to thus far to get through. It will all be worth it but my God I'm scared.
Sunday 18 November 2012
Here we go again....
So, first chemo and port fitting tomorrow. Slightly (okay, very) fearful.
Hoping that I get seen quickly so I can get back home as my poor husband has an extremely bad back - hopefully he hasn't ruptured a disc but we won't know until Wednesday....
I don't know what to say really. In some way it feels like tomorrow will be the end of "normality" as I have come to know it (well, the most recent version of normality), and in other ways it is the beginning of a whole new phase.
Perhaps the best way to think of it is the beginning of the end of cancer being in me?
I have had some amazing messages of love and support, which I am extremely grateful for. I know I have lots and lots of people rooting for me, and it helps. A lot.
I'm being picked up at 7.15 in the morning, and have no idea what time I shall be released. It'll depend on what time they can have a bed for me for the port fitting, then I'll wait for chemo and so it goes on.
My ipod and ipad have been charged and loaded with music etc so I should be fully entertained. The chance for a nap would also be nice ;-)
I shall report back in due course.
Wish me luck. I'm going in.....
Hoping that I get seen quickly so I can get back home as my poor husband has an extremely bad back - hopefully he hasn't ruptured a disc but we won't know until Wednesday....
I don't know what to say really. In some way it feels like tomorrow will be the end of "normality" as I have come to know it (well, the most recent version of normality), and in other ways it is the beginning of a whole new phase.
Perhaps the best way to think of it is the beginning of the end of cancer being in me?
I have had some amazing messages of love and support, which I am extremely grateful for. I know I have lots and lots of people rooting for me, and it helps. A lot.
I'm being picked up at 7.15 in the morning, and have no idea what time I shall be released. It'll depend on what time they can have a bed for me for the port fitting, then I'll wait for chemo and so it goes on.
My ipod and ipad have been charged and loaded with music etc so I should be fully entertained. The chance for a nap would also be nice ;-)
I shall report back in due course.
Wish me luck. I'm going in.....
Friday 16 November 2012
Wigs....
I had a wig fitting today. It was......interesting?
The youngest came with me, which was fun - he was rather entertained by me trying on different hair and was constantly asking "what's that mummy?" each time I tried a different wig on! Based on how I thought I looked in a wig, I thing that what he was really trying to say was "Mother, what in all the blazes do you think you have on your head? You look ridiculous, remove it at once."
Darling boy, I quite agree.
To summarise, the wigs I tried on today felt:
I did ask about the price of a wig made with real hair, but they are £400 or thereabouts, and that's only for one with shoulder length hair.... vain I may be, a millionairess I am not.
Does this mean I'm going to try the cold cap? Probably not, but it does mean that I shall have to consider being boldly bald and bearing all for a few months. I know I can wear hats and scarves, and I might even give them a try, but I have an overwhelming urge to just be me, whatever I look like, all the way through the treatment.
Unless I get really fat of course, at which point I shall hibernate and see you all next summer! [joking]
Anyway, I shall try a few more on - there's someone up the road who has an amazing reputation for wig fitting, and doesn't have a cosy NHS contract so may well have more choice....(therein lies another story)..... so there is hope.
Surprisingly, being bald doesn't scare me any more. It was one of the main things that occurred to me and concerned me when I knew I would definitely have to have chemo, but I have either become braver or more practical about the whole thing. After all, it will eventually grow back right?
Survival. That's the thing that is at the top of the list now. Beating it, making sure it never comes back. That's the only thing I am determined to focus on during my treatment.
I am sure I will falter and doubt myself and my ability to get through everything, but my intention is to try and remember my bravado now every time I throw up, feel fatigue, and even when my nails drop off (as my oncologist is so sure they will) and try and remember that all the side effects in the world will be worth it.
The youngest came with me, which was fun - he was rather entertained by me trying on different hair and was constantly asking "what's that mummy?" each time I tried a different wig on! Based on how I thought I looked in a wig, I thing that what he was really trying to say was "Mother, what in all the blazes do you think you have on your head? You look ridiculous, remove it at once."
Darling boy, I quite agree.
To summarise, the wigs I tried on today felt:
- Heavy
- Hot
- Itchy
- Tight
- Unnatural
- Weird
I did ask about the price of a wig made with real hair, but they are £400 or thereabouts, and that's only for one with shoulder length hair.... vain I may be, a millionairess I am not.
Does this mean I'm going to try the cold cap? Probably not, but it does mean that I shall have to consider being boldly bald and bearing all for a few months. I know I can wear hats and scarves, and I might even give them a try, but I have an overwhelming urge to just be me, whatever I look like, all the way through the treatment.
Unless I get really fat of course, at which point I shall hibernate and see you all next summer! [joking]
Anyway, I shall try a few more on - there's someone up the road who has an amazing reputation for wig fitting, and doesn't have a cosy NHS contract so may well have more choice....(therein lies another story)..... so there is hope.
Surprisingly, being bald doesn't scare me any more. It was one of the main things that occurred to me and concerned me when I knew I would definitely have to have chemo, but I have either become braver or more practical about the whole thing. After all, it will eventually grow back right?
Survival. That's the thing that is at the top of the list now. Beating it, making sure it never comes back. That's the only thing I am determined to focus on during my treatment.
I am sure I will falter and doubt myself and my ability to get through everything, but my intention is to try and remember my bravado now every time I throw up, feel fatigue, and even when my nails drop off (as my oncologist is so sure they will) and try and remember that all the side effects in the world will be worth it.
Tuesday 13 November 2012
The bedtime from hell
Also known as: "I think my son may be angry with me"....
The smallest has been doing really well with not being breast fed any more. After my bone scan, I could have fed him again as long as I expressed and dumped first, but I chose to wait and see what he did i.e. don't offer and don't refuse, to see whether he might take the opportunity to wean himself....
The bone scan was on the Monday night, and he didn't ask again until the Tuesday night/Weds morning? Awful though it sounds, bearing in mind how upset I was about having to stop, I don't entirely remember. Let's call it Wednesday - most likely early hours. So, I fed him, enjoyed the cuddles and left it at that to wait and see what he did. Thursday and Friday he fed a couple of times, then got a horrid chest infection and vomited due to gagging on phlegm for several days, so didn't really want anything except water and still then didn't actually ask for a feed.
The week after, he was physically a lot better, and didn't ask for a feed until the following Wednesday and I just told him that I was really sorry, but there was no more milk left, which seemed to work.
The next weekend involved a vomiting bug (poor little boy) and he couldn't even keep water down for nearly 2 days, and milk was the worst thing for him to have so asking for a feed wasn't an issue.
I thought we were in the clear, until this weekend just gone. The smallest ended up in our bed in the early hours of Saturday morning, and I ended up feeding him in my sleep...whoops....
He asked once on Sunday, and I trotted out the party line again, and he was fine with it, or so I thought, although I did get bitten on the back of the leg, which I think was a slight fit of pique/temper, but gave him the benefit of the doubt.
Tonight was a DISASTER.
Bathtime went as well as it normally does, with some highs and lows but no one drowned. We went to have stories in the smallest's bedroom and he started to cry, so I gave him a cuddle which sort of help, and he ended up trying to cling to me like a limpet , so my husband took the biggest to bed, and came back to see how I was getting on.
Basically, it didn't go well at all. I hoped that he would have a cuddle and go to sleep, which isn't unheard of. I tried everything including standing up and jiggling, jogging, swaying etc - all of which used to work when he was little.
It was so so horrible - he just seemed so angry at me, climing all over me, and he just seemed so frustrated.
Eventually I had to give up and let my husband take over. He tried to settle the smallest for a couple of minutes upstairs then brought him downstairs for some milk and the chance to reboot the system, which seemed to work. A quick cuddle from mummy on the sofa, some milk, and a cuddle in bed with daddy and fortunately, he's now passed out in bed, nearly an hour after we started the process.
Horrific. I really hope never to have to go through that again.
I'm sure my son will forgive me one day, I just hope it is one day soon....
The smallest has been doing really well with not being breast fed any more. After my bone scan, I could have fed him again as long as I expressed and dumped first, but I chose to wait and see what he did i.e. don't offer and don't refuse, to see whether he might take the opportunity to wean himself....
The bone scan was on the Monday night, and he didn't ask again until the Tuesday night/Weds morning? Awful though it sounds, bearing in mind how upset I was about having to stop, I don't entirely remember. Let's call it Wednesday - most likely early hours. So, I fed him, enjoyed the cuddles and left it at that to wait and see what he did. Thursday and Friday he fed a couple of times, then got a horrid chest infection and vomited due to gagging on phlegm for several days, so didn't really want anything except water and still then didn't actually ask for a feed.
The week after, he was physically a lot better, and didn't ask for a feed until the following Wednesday and I just told him that I was really sorry, but there was no more milk left, which seemed to work.
The next weekend involved a vomiting bug (poor little boy) and he couldn't even keep water down for nearly 2 days, and milk was the worst thing for him to have so asking for a feed wasn't an issue.
I thought we were in the clear, until this weekend just gone. The smallest ended up in our bed in the early hours of Saturday morning, and I ended up feeding him in my sleep...whoops....
He asked once on Sunday, and I trotted out the party line again, and he was fine with it, or so I thought, although I did get bitten on the back of the leg, which I think was a slight fit of pique/temper, but gave him the benefit of the doubt.
Tonight was a DISASTER.
Bathtime went as well as it normally does, with some highs and lows but no one drowned. We went to have stories in the smallest's bedroom and he started to cry, so I gave him a cuddle which sort of help, and he ended up trying to cling to me like a limpet , so my husband took the biggest to bed, and came back to see how I was getting on.
Basically, it didn't go well at all. I hoped that he would have a cuddle and go to sleep, which isn't unheard of. I tried everything including standing up and jiggling, jogging, swaying etc - all of which used to work when he was little.
It was so so horrible - he just seemed so angry at me, climing all over me, and he just seemed so frustrated.
Eventually I had to give up and let my husband take over. He tried to settle the smallest for a couple of minutes upstairs then brought him downstairs for some milk and the chance to reboot the system, which seemed to work. A quick cuddle from mummy on the sofa, some milk, and a cuddle in bed with daddy and fortunately, he's now passed out in bed, nearly an hour after we started the process.
Horrific. I really hope never to have to go through that again.
I'm sure my son will forgive me one day, I just hope it is one day soon....
Thursday 8 November 2012
Feeling self-conscious
I seem to have the verbal runs tonight.
I'm auctioneering tomorrow, so popped into work today for a few hours and felt extremely self-conscious with my new and still slightly pink hair do. Silly really, it's only hair!
I've had lots of compliments about it, as apparently it makes me look much younger which helps considerably as I've been struggling with trying to style it.
Of course, it's really the beginning of a period of self-consciousness isn't it? I start chemo in 10 days, so in about 25-30 my hair could all be gone, at which point my stupid complaints about having short hair will be just that.
I have a wig fitting booked for the 16th, which could be entertaining as I'm taking the children and my husband too! It's being held in The Big C centre at our hospital, which has a lovely general seating area that is available for cancer patients and their carers/families to use.
I really want the children to see the centre as if I tell them that this is where I'm disappearing to every 3 weeks they will hopefully have visions of the lovely round building with big comfy arm chairs and lots of tea and biscuits.... not that we've even really told the children I'll be having any treatment yet. I don't want the eldest to worry about it too much in advance.
So, in a few weeks time I'll be needing you to tell me to get a grip and sort myself out. Or perhaps I should be getting a grip now?
Who knows?
It's a lot to get used to, and despite the fact that I've been living with a diagnosis since August, the fact that I actually am GOING TO HAVE CHEMO has been so far at the back of my mind it's been in a different time zone.
It had never occurred to me before that I might be this vain. After Chemo I'll be starting the RT, Herceptin and Tamoxifen. There are so many people out there who have weight gain issues with the Tamoxifen (and some with water retention with the FEC Chemo) it has slightly freaked me out too. On top of being bald, I don't want to be fat too....
Good grief, what a pity fest. Better to be alive right?
I'm auctioneering tomorrow, so popped into work today for a few hours and felt extremely self-conscious with my new and still slightly pink hair do. Silly really, it's only hair!
I've had lots of compliments about it, as apparently it makes me look much younger which helps considerably as I've been struggling with trying to style it.
Of course, it's really the beginning of a period of self-consciousness isn't it? I start chemo in 10 days, so in about 25-30 my hair could all be gone, at which point my stupid complaints about having short hair will be just that.
I have a wig fitting booked for the 16th, which could be entertaining as I'm taking the children and my husband too! It's being held in The Big C centre at our hospital, which has a lovely general seating area that is available for cancer patients and their carers/families to use.
I really want the children to see the centre as if I tell them that this is where I'm disappearing to every 3 weeks they will hopefully have visions of the lovely round building with big comfy arm chairs and lots of tea and biscuits.... not that we've even really told the children I'll be having any treatment yet. I don't want the eldest to worry about it too much in advance.
So, in a few weeks time I'll be needing you to tell me to get a grip and sort myself out. Or perhaps I should be getting a grip now?
Who knows?
It's a lot to get used to, and despite the fact that I've been living with a diagnosis since August, the fact that I actually am GOING TO HAVE CHEMO has been so far at the back of my mind it's been in a different time zone.
It had never occurred to me before that I might be this vain. After Chemo I'll be starting the RT, Herceptin and Tamoxifen. There are so many people out there who have weight gain issues with the Tamoxifen (and some with water retention with the FEC Chemo) it has slightly freaked me out too. On top of being bald, I don't want to be fat too....
Good grief, what a pity fest. Better to be alive right?
Out of the mouths of babes....
As you know, I've been lamenting the fact that there are never going to be any more children in my life, other than the wonderful two I have.
I'm incredibly lucky to have them. Spoilt even, but still, it's an open wound that hasn't healed yet.
So, bedtime tonight, and we're choosing stories. We have one of the Usbourne "new experiences books", and have been working our way through them for some time. One of the stories is entitled "The New Baby".
You can probably see where this is heading.....
Isobel, my eldest, pipes up saying that she would like me to have a new baby.
Ouch. Bugger. Bollocks.
I try explaining that I already have two wonderful children and that I love them so much I don't think it would be fair to have another baby, but apparently this isn't good enough for madam tonight.
I'm sure she'll get over it, but it hurts in the meantime.
Time for a sob?
I'm incredibly lucky to have them. Spoilt even, but still, it's an open wound that hasn't healed yet.
So, bedtime tonight, and we're choosing stories. We have one of the Usbourne "new experiences books", and have been working our way through them for some time. One of the stories is entitled "The New Baby".
You can probably see where this is heading.....
Isobel, my eldest, pipes up saying that she would like me to have a new baby.
Ouch. Bugger. Bollocks.
I try explaining that I already have two wonderful children and that I love them so much I don't think it would be fair to have another baby, but apparently this isn't good enough for madam tonight.
I'm sure she'll get over it, but it hurts in the meantime.
Time for a sob?
Wednesday 7 November 2012
In other news
Other than going pink, it has been a busy week with my Bone Scan on Monday night, filming for the Red Tractor on the farm with Jimmy Doherty (he is really lovely), and I even popped into work on Thursday. I wasn't particularly effective, but I was there.
I also have my Port fitting date and first Chemo date - both on 19th November. It's going to be a long day - I have to be there before 8am and will have to wait for a bed to do the port fitting, and once that is done, I'll be in the queue for Chemo. Apparently, if I don't get Chemo until early/late evening they will keep me in, which I'm not looking forward to, other than potentially a full nights sleep (gah, children!) and drugs on tap to counter side effects if I need them.
Actually, from that list there are lots of potential positives for staying in, but we'll see what happens on the day. I'll have to make sure I pack lots of reading materials so I don't get too bored, but hopefully I'll be allowed to wander round trather than have to be stuck in one room/ward all day.
Some brilliant news though - my bone and CT scans have come back clear, which is an enormous relief.
I can, hopefully and tentatively say that we may have caught the cancer early. Fingers crossed.
I have one got one more test before I start, which is a Cardiogram, and rather essential before considering starting Herceptin, but I'm not as worried about this one - to my knowledge my heart has always been nice and strong!
Oh yes, and a wig fitting - this should be entertaining! I'm half thinking about taking my daughter along to watch - I think she might find it hilarious.....
I also have my Port fitting date and first Chemo date - both on 19th November. It's going to be a long day - I have to be there before 8am and will have to wait for a bed to do the port fitting, and once that is done, I'll be in the queue for Chemo. Apparently, if I don't get Chemo until early/late evening they will keep me in, which I'm not looking forward to, other than potentially a full nights sleep (gah, children!) and drugs on tap to counter side effects if I need them.
Actually, from that list there are lots of potential positives for staying in, but we'll see what happens on the day. I'll have to make sure I pack lots of reading materials so I don't get too bored, but hopefully I'll be allowed to wander round trather than have to be stuck in one room/ward all day.
Some brilliant news though - my bone and CT scans have come back clear, which is an enormous relief.
I can, hopefully and tentatively say that we may have caught the cancer early. Fingers crossed.
I have one got one more test before I start, which is a Cardiogram, and rather essential before considering starting Herceptin, but I'm not as worried about this one - to my knowledge my heart has always been nice and strong!
Oh yes, and a wig fitting - this should be entertaining! I'm half thinking about taking my daughter along to watch - I think she might find it hilarious.....
Friday 2 November 2012
Return of the Pink Ladies!
Well, we did it! on Tuesday we went well and truly pink, and my locks have been (sadly) binned, as my hair was too short to donate to the Little Princess Trust.
The Gallery hairdressers in Norwich did the deed, and we absolutely amazing and didn't charge us a penny, despite the fact that we were there for over 4 hours and rather monopolised 3-4 of their team members!
All in all it went very well, but short hair is going to take a while to get used to...... then it'll all fall out....
Here is a picture of my new "do"
And a link or two to some facebook albumns:
Pink Ladies
Pink Ladies 2
Fund raising wise, it has been incredible - including gift aid, as at 2nd November we are over £3,300.
Virgin Money Giving
There have been some articles in the local newspapers about our fund raising efforts, which are great, but I didn't realise that the "journalist" who interviewed me would be quite so explicit with her descriptions of what I've had done.... it is very, honest, shall we say?
Hey ho. Perhaps I'll keep my head down for a few days.
The whole point though is to raise awareness. I'm not ashamed of having had a mastectomy, and am not frightened to tell people I have cancer/am being treated for cancer. Whilst this is a part of my life I wish I wasn't going through it is what it is and I can't change it.
My hope is that if my life and my experiences are out there for people to read about, perhaps others might not be afraid to ask questions and will actually check themselves, and take the risk of cancer more seriously than I ever did.
The Gallery hairdressers in Norwich did the deed, and we absolutely amazing and didn't charge us a penny, despite the fact that we were there for over 4 hours and rather monopolised 3-4 of their team members!
All in all it went very well, but short hair is going to take a while to get used to...... then it'll all fall out....
Here is a picture of my new "do"
And a link or two to some facebook albumns:
Pink Ladies
Pink Ladies 2
Fund raising wise, it has been incredible - including gift aid, as at 2nd November we are over £3,300.
Virgin Money Giving
There have been some articles in the local newspapers about our fund raising efforts, which are great, but I didn't realise that the "journalist" who interviewed me would be quite so explicit with her descriptions of what I've had done.... it is very, honest, shall we say?
Hey ho. Perhaps I'll keep my head down for a few days.
The whole point though is to raise awareness. I'm not ashamed of having had a mastectomy, and am not frightened to tell people I have cancer/am being treated for cancer. Whilst this is a part of my life I wish I wasn't going through it is what it is and I can't change it.
My hope is that if my life and my experiences are out there for people to read about, perhaps others might not be afraid to ask questions and will actually check themselves, and take the risk of cancer more seriously than I ever did.
Monday 29 October 2012
The end of an era
I'm not sure what to write. I'm not even sure why I'm trying to write it, but I guess it's my blog so I can write it if I want to...!
It's silly really, but as of 6am this morning, unless I am told otherwise at my bone scan later on, I have given my son his last breast feed.
He's two years old, he isn't going to starve to death, but feeding him thus far has been extremely fulfilling, soothing and has deepened our bond. I wanted him to have the same chance to self-wean that his sister had, but it isn't going to happen. I'm fairly sure that he's going to be fairly cross, actually, for the next few days, but he will forgive me, and probably not even remember the fact that he was breast fed after a couple of weeks have passed. It doesn't stop me being sad about it though.
I can't help but mourn a bit too, for the choice of having more children taken away from me. Having a third was unlikely, but the lack of control, lack of choice, is painful. The bravado, telling people that I've finished with my ovaries, so they can go too, once I've finished chemo, is all a bit of a front, but I keep hoping that if I say these things often enough I will start to believe them.
I know I am repeating myself, with the talk of ending breast feeding and so on, but I can't stop feeling sad about it, therefore I have to talk about it else I will go mad.
Hopefully, the CT scan I had last week and the bone scan I am going to have today will come back clear, and I can start to cheer up and get on with Chemo. The waiting is the worst bit, and the fear of the unknown.
Of course tomorrow, I have the added excitement of having my hair cut v short and being dyed pink!
Onwards, upwards, and pinkwards!
http://uk.virginmoneygiving.com/team/RebeccasPinkLadies
It's silly really, but as of 6am this morning, unless I am told otherwise at my bone scan later on, I have given my son his last breast feed.
He's two years old, he isn't going to starve to death, but feeding him thus far has been extremely fulfilling, soothing and has deepened our bond. I wanted him to have the same chance to self-wean that his sister had, but it isn't going to happen. I'm fairly sure that he's going to be fairly cross, actually, for the next few days, but he will forgive me, and probably not even remember the fact that he was breast fed after a couple of weeks have passed. It doesn't stop me being sad about it though.
I can't help but mourn a bit too, for the choice of having more children taken away from me. Having a third was unlikely, but the lack of control, lack of choice, is painful. The bravado, telling people that I've finished with my ovaries, so they can go too, once I've finished chemo, is all a bit of a front, but I keep hoping that if I say these things often enough I will start to believe them.
I know I am repeating myself, with the talk of ending breast feeding and so on, but I can't stop feeling sad about it, therefore I have to talk about it else I will go mad.
Hopefully, the CT scan I had last week and the bone scan I am going to have today will come back clear, and I can start to cheer up and get on with Chemo. The waiting is the worst bit, and the fear of the unknown.
Of course tomorrow, I have the added excitement of having my hair cut v short and being dyed pink!
Onwards, upwards, and pinkwards!
http://uk.virginmoneygiving.com/team/RebeccasPinkLadies
Friday 26 October 2012
Oncology department....
.....is apparently a scary place to be. If you've spent 2 weeks with your head in the sand like me, anyway.
So far I've had 3 trips to hospital this week.
Monday - Orthotics (for a new false boob fitting)
Tuesday - CT scan of chest and abdomen
Wednesday - Oncology
Monday was easy peasy, all running to time, got to go back in 2-3 weeks for another fitting if the size I need has arrived as nothing in stock.
Tuesday, was okay but a bit scary. Amazing machine and in some ways quite fascinating. Had to drink a litre of something vile tasting which helps the Doctors see what they need to see, got semi-disrobed and had a cannula put in so they could put the contrast/dye in for the actual scan. This had some really weird side affects - I am incredibly glad they told me about them before we started!
For some season, the injection of the dye makes you feel like you have wet yourself - a really odd hot feeling, which rather unnerved me shall we say! (CLENCH). I also got a huge hot flush and funny metallic taste in my mouth which was slightly easier to deal with. None of these feelings lasted for more than 2mins, but wow. Weird.
All ran to time though, despite it being an incredibly busy unit. Lovely staff as usual.
Wednesday, and time to meet my Oncologist. It's another big department, and although I was trying to be bright and breezy I didn't pull it off all the way through. For the first time, I've actually been confronted with the reality of Chemo and the potential side effects, not to mention (and I hope this doesn't sound as awful as it feels), the amount of people I saw that actually look ill. I don't feel like one of them, and I don't want to be one of them either.
My oncologist make take a while to get used to - he isn't as naturally upbeat as my lovely surgeon. I had a sort of "pop quiz" when I first went in, asking me about what I had had done, checking that I knew what grades my cancer is, checking I understood about the seriousness of my lymph nodes being positive (3 of 16) ..... you get the drift. I know that it must be very useful for him to know what my level of understanding is, but the questions over whether I knew why I was being offered chemo, and whether I thought it was the right thing to do etc did throw me.
Anyway, we got along well enough. I didn't have to ask whether I could be fitted with a Port - he took one look at the veins on the back of my hand and asked whether I would object to having one fitted. Phew. I know that some people have to fight to get them put in, and spend ages trying to get veins more visible for cannula insertion, so this was a big relief. I won't lie - I don't like the idea of it being in me, but I can see how it might be a godsend once it is in there.
The other "entertaining" bit of advice was that if my children or husband become poorly, I should keep my distance as much as possible..... erm okay. I can understand that if the children get something nasty and infectious (although they have already had chicken pox which is the only thing I can think of right now) that I should stay away, but common colds? I don't see how it is possible.
Oh yes, and the emergency card with the list of chemo related side affects that they recommend a telephone call to the department for. That's fun to read too.
It's weird isn't it. I don't feel ill, but potentially I am ill, or at least, the medicine has the potential to make me ill.
Suddenly it is all very serious. Again. I'm finding it harder to laugh it off.
I won't lie, I'm worried about getting the CT scan results, and about the bone scan that I have booked for Monday night. They are just routine appointments, for staging the disease, but I'm just keeping my fingers and toes tightly crossed that they don't find anything else.
I don't know if I caught my lump early. I have no idea how long it had been there. It's a bit embarrassing really - how could I not have noticed sooner? What damage have I let happen in the meantime, how far has it spread via my lymphatic system?
I went on the Younger Women's Group facebook page tonight, which is a group set up by local ladies under 50yrs of age with Breast Cancer. In the short section I looked at on facebook, there were no less than 3 deaths reported - all under 45, in the few months. The most recent was a lady of 27yrs, whose cancer had spread to her chest wall, arm, and lining of her lung. Shit. She was 7 yrs younger than me. Poor girl.
I'm sad to say I never met the lady in question, Rachel, but it sounds like she was amazing - she raised a lot of money for various cancer charities in Norfolk and carried the Olympic torch this summer too.
Cancer is such a vile, sneaking, cheating disease. It isn't honest. There's nothing tangible that you can fight against. The only real option is the surgery, the medicines, and the radiotherapy, and I don't want them. Not really. But then I don't intend to bloody die yet either.
Argh. Melodramatic much.
Dark thoughts for a Friday night. For any night.
I just need to keep focused on starting Chemo, and on starting stage two of the battle, and keeping a positive mental attitude.
So far I've had 3 trips to hospital this week.
Monday - Orthotics (for a new false boob fitting)
Tuesday - CT scan of chest and abdomen
Wednesday - Oncology
Monday was easy peasy, all running to time, got to go back in 2-3 weeks for another fitting if the size I need has arrived as nothing in stock.
Tuesday, was okay but a bit scary. Amazing machine and in some ways quite fascinating. Had to drink a litre of something vile tasting which helps the Doctors see what they need to see, got semi-disrobed and had a cannula put in so they could put the contrast/dye in for the actual scan. This had some really weird side affects - I am incredibly glad they told me about them before we started!
For some season, the injection of the dye makes you feel like you have wet yourself - a really odd hot feeling, which rather unnerved me shall we say! (CLENCH). I also got a huge hot flush and funny metallic taste in my mouth which was slightly easier to deal with. None of these feelings lasted for more than 2mins, but wow. Weird.
All ran to time though, despite it being an incredibly busy unit. Lovely staff as usual.
Wednesday, and time to meet my Oncologist. It's another big department, and although I was trying to be bright and breezy I didn't pull it off all the way through. For the first time, I've actually been confronted with the reality of Chemo and the potential side effects, not to mention (and I hope this doesn't sound as awful as it feels), the amount of people I saw that actually look ill. I don't feel like one of them, and I don't want to be one of them either.
My oncologist make take a while to get used to - he isn't as naturally upbeat as my lovely surgeon. I had a sort of "pop quiz" when I first went in, asking me about what I had had done, checking that I knew what grades my cancer is, checking I understood about the seriousness of my lymph nodes being positive (3 of 16) ..... you get the drift. I know that it must be very useful for him to know what my level of understanding is, but the questions over whether I knew why I was being offered chemo, and whether I thought it was the right thing to do etc did throw me.
Anyway, we got along well enough. I didn't have to ask whether I could be fitted with a Port - he took one look at the veins on the back of my hand and asked whether I would object to having one fitted. Phew. I know that some people have to fight to get them put in, and spend ages trying to get veins more visible for cannula insertion, so this was a big relief. I won't lie - I don't like the idea of it being in me, but I can see how it might be a godsend once it is in there.
The other "entertaining" bit of advice was that if my children or husband become poorly, I should keep my distance as much as possible..... erm okay. I can understand that if the children get something nasty and infectious (although they have already had chicken pox which is the only thing I can think of right now) that I should stay away, but common colds? I don't see how it is possible.
Oh yes, and the emergency card with the list of chemo related side affects that they recommend a telephone call to the department for. That's fun to read too.
It's weird isn't it. I don't feel ill, but potentially I am ill, or at least, the medicine has the potential to make me ill.
Suddenly it is all very serious. Again. I'm finding it harder to laugh it off.
I won't lie, I'm worried about getting the CT scan results, and about the bone scan that I have booked for Monday night. They are just routine appointments, for staging the disease, but I'm just keeping my fingers and toes tightly crossed that they don't find anything else.
I don't know if I caught my lump early. I have no idea how long it had been there. It's a bit embarrassing really - how could I not have noticed sooner? What damage have I let happen in the meantime, how far has it spread via my lymphatic system?
I went on the Younger Women's Group facebook page tonight, which is a group set up by local ladies under 50yrs of age with Breast Cancer. In the short section I looked at on facebook, there were no less than 3 deaths reported - all under 45, in the few months. The most recent was a lady of 27yrs, whose cancer had spread to her chest wall, arm, and lining of her lung. Shit. She was 7 yrs younger than me. Poor girl.
I'm sad to say I never met the lady in question, Rachel, but it sounds like she was amazing - she raised a lot of money for various cancer charities in Norfolk and carried the Olympic torch this summer too.
Cancer is such a vile, sneaking, cheating disease. It isn't honest. There's nothing tangible that you can fight against. The only real option is the surgery, the medicines, and the radiotherapy, and I don't want them. Not really. But then I don't intend to bloody die yet either.
Argh. Melodramatic much.
Dark thoughts for a Friday night. For any night.
I just need to keep focused on starting Chemo, and on starting stage two of the battle, and keeping a positive mental attitude.
Wednesday 24 October 2012
It looks like the pinkness is catching!
I've had another 3 volunteers for dyeing their hair wholly or partly pink. Amazing! And, the current fund raising total is just fabulous as well.
I'm utterly staggered by how generous people are being. I did of course have high hopes that we would reach my fund raising target of £750, but to nearly be there in under 3 days is amazing. Thank you everyone so much for your generosity and support. It really does mean so so much to me, and of course, the brave souls who are joining me in going pink.
Rebecca x
I'm utterly staggered by how generous people are being. I did of course have high hopes that we would reach my fund raising target of £750, but to nearly be there in under 3 days is amazing. Thank you everyone so much for your generosity and support. It really does mean so so much to me, and of course, the brave souls who are joining me in going pink.
Rebecca x
Monday 22 October 2012
Pink Ladies
Well, it's all booked!
Next Tuesday 30th October for a short hair cut and lots of pink dye!
Many many photos to follow, but for now, a link to our fundraising page for sharing and donations, wherever possible. Pretty please!
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=RebeccasPinkLadies
Next Tuesday 30th October for a short hair cut and lots of pink dye!
Many many photos to follow, but for now, a link to our fundraising page for sharing and donations, wherever possible. Pretty please!
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=RebeccasPinkLadies
Sunday 21 October 2012
A birthday, and the arrival of the Quilt of Love
Wow, the time goes fast!
My little boy was two today and I can safely say that he is more gorgeous than ever. Despite being full of cold, and on the vommy side due to having the most ridiculously sensitive gag reflex in the world. Ever.
We have had a lovely day, despite a few tantrums - but if you can't have a tantrum on your birthday, when can you?!
I feel very blessed, to have such lovely children. I saw a glimmer of the future today, as they sat side by side on the sofa playing with a sticker book and chattering to each other.
I hope it isn't too trite, but it has given me a reminder (as if I needed one) that I have so so so much to fight for, to ensure that I kick the fucking cancer out of my body for good.
Another wonderful thing happened this weekend. Well, Friday.
An unexpected parcel arrived, and within it was the most beautiful quilt, made, with love, by the most amazing people. I am so honoured to have received it, and the time and effort that has gone into it is incredible.
You know who you are, and I thank you from the bottom of my heart.
My little boy was two today and I can safely say that he is more gorgeous than ever. Despite being full of cold, and on the vommy side due to having the most ridiculously sensitive gag reflex in the world. Ever.
We have had a lovely day, despite a few tantrums - but if you can't have a tantrum on your birthday, when can you?!
I feel very blessed, to have such lovely children. I saw a glimmer of the future today, as they sat side by side on the sofa playing with a sticker book and chattering to each other.
I hope it isn't too trite, but it has given me a reminder (as if I needed one) that I have so so so much to fight for, to ensure that I kick the fucking cancer out of my body for good.
Another wonderful thing happened this weekend. Well, Friday.
An unexpected parcel arrived, and within it was the most beautiful quilt, made, with love, by the most amazing people. I am so honoured to have received it, and the time and effort that has gone into it is incredible.
You know who you are, and I thank you from the bottom of my heart.
Wednesday 17 October 2012
Feeling the fear again
I'm having a tough week. And it is only Wednesday.
Despite a fab weekend celebrating the children's birthdays, and bouncing a fair bit on a bouncy castle, my birthday on Tuesday rather reinforced some of the crap that I'm dealing with at the moment.
Interspersed with the birthday cards were hospital appointment letters for a CT Scan, Bone Scan, Oncology appointment, confirmation of a follow up for 9th October 2013 with Mr Pain, and letter from Mr Pain to my GP, confirming what I've had done, what I am to have done, and also that as they are not 100% sure of the diagnosis on my left breast, that I'm to have an MRI within 6mths to see whether the fibroadenoma (benign tumour) could in fact be something more. I'm already worried about my remaining breast anyway, as it feels totally different to how it did pre-biopsy, and I don't know whether I am imagining things or whether I ought to get it checked out sooner, but then perhaps the CT Scan of my chest might show something if there is anything to worry about? Perhaps the chemo will kill anything off if it is there anyway, and it only has to stay for a year until I have reconstruction as it is definitely coming off then....and I'm certainly going to have my ovaries removed as well.
And breathe.
I was also watching some of the Stand Up to Cancer stuff on Channel 4 (specifically the Big Sing) and whilst a lot of me was really moved and inspired by the past and present cancer fighters singing at the Royal Albert Hall, part of me couldn't help but feel terrified at the bald heads, the visible PICC Line.
It is starting to sink in that soon, this is going to be me.
What has happened to my life?
In an effort to be positive, I am taking part in a makeover tomorrow night for Keeping Abreast as the Younger Woman's BC group will be there and myself and another post mastectomy lady are being made over to show that you can still be glamorous despite the fucking cancer. Oh yes, and it should also be fun! Trying on lots of lovely clothes should be fun in any case, as should having my hair done - enjoying it whilst it lasts so to speak.
I'm not having second thoughts about getting my hair cut for charity, but I am sad that it's not going to be there for a while, even though I know it will grow back eventually. It's the one part of me that I really quite like. Dammit.
I also popped to see the hairdresser for tomorrow night's makeover, as they have offered to cut my hair for me, free of charge, and dye it as well. I'll be going to the very fabulous Gallery Haircutters and the very lovely proprietor is confident that he can make short hair look good on me, and has lots of great ideas about how to introduce the pink. I like a confident man.
They were very kind at the hairdressers, and have gone to great lengths to remind me that my hair might not fall out.
I'm certain though, that even if it doesn't fall out, that I'll be happy with my decision, even if I am quaking in my slippers about it now.
After all, it's only hair and will grow back. Right?
Despite a fab weekend celebrating the children's birthdays, and bouncing a fair bit on a bouncy castle, my birthday on Tuesday rather reinforced some of the crap that I'm dealing with at the moment.
Interspersed with the birthday cards were hospital appointment letters for a CT Scan, Bone Scan, Oncology appointment, confirmation of a follow up for 9th October 2013 with Mr Pain, and letter from Mr Pain to my GP, confirming what I've had done, what I am to have done, and also that as they are not 100% sure of the diagnosis on my left breast, that I'm to have an MRI within 6mths to see whether the fibroadenoma (benign tumour) could in fact be something more. I'm already worried about my remaining breast anyway, as it feels totally different to how it did pre-biopsy, and I don't know whether I am imagining things or whether I ought to get it checked out sooner, but then perhaps the CT Scan of my chest might show something if there is anything to worry about? Perhaps the chemo will kill anything off if it is there anyway, and it only has to stay for a year until I have reconstruction as it is definitely coming off then....and I'm certainly going to have my ovaries removed as well.
And breathe.
I was also watching some of the Stand Up to Cancer stuff on Channel 4 (specifically the Big Sing) and whilst a lot of me was really moved and inspired by the past and present cancer fighters singing at the Royal Albert Hall, part of me couldn't help but feel terrified at the bald heads, the visible PICC Line.
It is starting to sink in that soon, this is going to be me.
What has happened to my life?
In an effort to be positive, I am taking part in a makeover tomorrow night for Keeping Abreast as the Younger Woman's BC group will be there and myself and another post mastectomy lady are being made over to show that you can still be glamorous despite the fucking cancer. Oh yes, and it should also be fun! Trying on lots of lovely clothes should be fun in any case, as should having my hair done - enjoying it whilst it lasts so to speak.
I'm not having second thoughts about getting my hair cut for charity, but I am sad that it's not going to be there for a while, even though I know it will grow back eventually. It's the one part of me that I really quite like. Dammit.
I also popped to see the hairdresser for tomorrow night's makeover, as they have offered to cut my hair for me, free of charge, and dye it as well. I'll be going to the very fabulous Gallery Haircutters and the very lovely proprietor is confident that he can make short hair look good on me, and has lots of great ideas about how to introduce the pink. I like a confident man.
They were very kind at the hairdressers, and have gone to great lengths to remind me that my hair might not fall out.
I'm certain though, that even if it doesn't fall out, that I'll be happy with my decision, even if I am quaking in my slippers about it now.
After all, it's only hair and will grow back. Right?
Monday 15 October 2012
The cunning plan!
Right, as you know, I want to do something positive to raise awareness of Breast Cancer and raise some money for charity.
Well, here is the wonderfully cunning plan, suggested by my lovely friend.
Not only am I going to take the plunge and get my hair cut short, I'm also going to dye it pink, as is my friend, and several other wonderful friends and family are going to dye the ends of their hair pink, dye a stripe pink, get their nails done in bright pink, wear pink....you get the gist.
So, final details to follow shortly - it will most probably take place on 30th October, and there will most definitely be lots of reminders about how to sponsor us, and pleas for mentions on facebook and twitter.
So, wish me luck - I'm going to need it, and thank you so much to the person who suggested such a crazy plan. I don't think you really know how much it means to have your support and to be honest, I am not sure I can adequately vocalise my gratitude. All I can say is "thank you" from the bottom of my heart.
Well, here is the wonderfully cunning plan, suggested by my lovely friend.
Not only am I going to take the plunge and get my hair cut short, I'm also going to dye it pink, as is my friend, and several other wonderful friends and family are going to dye the ends of their hair pink, dye a stripe pink, get their nails done in bright pink, wear pink....you get the gist.
So, final details to follow shortly - it will most probably take place on 30th October, and there will most definitely be lots of reminders about how to sponsor us, and pleas for mentions on facebook and twitter.
So, wish me luck - I'm going to need it, and thank you so much to the person who suggested such a crazy plan. I don't think you really know how much it means to have your support and to be honest, I am not sure I can adequately vocalise my gratitude. All I can say is "thank you" from the bottom of my heart.
Thursday 11 October 2012
Results!
Finally, some good news!
Out of the 13 nodes I had removed, only 1 has tested positive for tumour cells. Thank eff for that. Talk about relieved.
So, my treatment plan as I had expected and "hoped for":
I am waiting for my oncologist appointment to come through - the appointment itself should be in the next 10 days, so after that I'll find out what drugs I am going to be on.
Once I get 6mths or so pas the RT I can start to think about reconstruction, and most importantly, having the other breast removed. I have also asked whether they will remove my ovaries - apparently, the outcome for women whose periods don't return post chemo is better for those whose periods do return, and on that basis Mr Pain thinks that it might be a sensible option for me. Frankly, I'll be glad to see the back of them!
Other than that, all pretty straightforward stuff. I asked about a genetic test and he said that unless we can discover any other family history that indicates otherwise he doesn't think that genetic testing is necessary - my test results also don't indicate that this is something hereditary, so I have just been unlucky. I think that my father is going to delve a little deeper into the family tree and medical history, so we'll see what comes of it.
It's so nice to be abled to have good news for a change! All we need now is for the children to start sleeping properly, and we'll be set...
Out of the 13 nodes I had removed, only 1 has tested positive for tumour cells. Thank eff for that. Talk about relieved.
So, my treatment plan as I had expected and "hoped for":
- Chemotherapy every 3 weeks for 6 - 8 cycles
- Radiotherapy every day for 3 weeks, post chemo
- Herceptin every 3 - 4 weeks for a year
- Tamoxifen pills for 5 years
I am waiting for my oncologist appointment to come through - the appointment itself should be in the next 10 days, so after that I'll find out what drugs I am going to be on.
Once I get 6mths or so pas the RT I can start to think about reconstruction, and most importantly, having the other breast removed. I have also asked whether they will remove my ovaries - apparently, the outcome for women whose periods don't return post chemo is better for those whose periods do return, and on that basis Mr Pain thinks that it might be a sensible option for me. Frankly, I'll be glad to see the back of them!
Other than that, all pretty straightforward stuff. I asked about a genetic test and he said that unless we can discover any other family history that indicates otherwise he doesn't think that genetic testing is necessary - my test results also don't indicate that this is something hereditary, so I have just been unlucky. I think that my father is going to delve a little deeper into the family tree and medical history, so we'll see what comes of it.
It's so nice to be abled to have good news for a change! All we need now is for the children to start sleeping properly, and we'll be set...
Tuesday 9 October 2012
Exhaustion
One whole day at work (at a machinery auction, so fresh air ALL day) and I am shattered! Pathetic, but least I have actually been at work today. I cannot complain at the weather - it has been a stunningly sunny day and only a bit cold, so quite pleasant to stand around in and chat to people.
My role was mainly PR, networking, troubleshooting, and camera-woman today, which was actually quite nice. I had the chance to chat to lots of clients that I have known for over 7 years, and have a good old catch up with lots of my husband's peers. I've also been called "remarkable" by one of the Directors of the firm I work for, which is rather nice. Apparently they are all very surprised at me being up and about and so active after my ops. It probably helped that I was standing on top of a piece of farm machinery at the time - well, I'm only 5'4 so I need all the help I can get when taking photos of tractors and crowds of people!
I'm feeling a bit off colour though, rather annoyingly, as I had my flu jab yesterday, which has coincided with the children coming out in a stinking cold - bleurgh . I shall get my own back though, as my husband and both children are going to have the jab next week too - if I can avoid them bringing any more germs home than absolutely necessary, and of course try and protect them against the nasty flu bugs that have been around in recent years, so much the better.
Not looking forward to tomorrow, obviously, but perhaps I will be surprised and get some reasonable news for a change. If nothing else, it will be interesting to see how many lymph nodes Mr Pain took out - from what I understand, everyone has a different number of nodes so it will be interesting to see how many I had. Not that it matters but one can't help but be curious.
In an attempt to curry favour, I've also made a batch of fudge for my lovely consultant, seeing as he was so keen on the box that I was given when I last saw him in hospital.
I'm rather chuffed actually - the last two attempts I have had at making fudge were awful, but last night's "quick fudge" recipe worked a treat. It's very chocolaty, but I don't think that is necessarily a bad thing.
For anyone that wants it, the recipe is as follows:
397g Can of condensed milk
450g Plain chocolate
2 tsps Vanilla extract
Chopped walnuts/almonds/similar if desired
Basically, heat the chocolate and condensed milk in the microwave until the chocolate has melted (2-3 mins), add the remainder of the ingredients and beat until smooth.
Pour into a 20 x 20cm square cake tin, lined with tin foil and allow to cool in the fridge for 2 hours.
Judging by the comments from the children this morning (who were allowed to try some tiny slivers), the recipe is a good one. I can feel a home made Christmas coming on!
I've had to tell a few more people today, which was a bit upsetting. It must be so hard for people to know how to react as well - I hate doing it.
I always try to be upbeat, but it does get me down. I'm so bloody tempted just to do a facebook post or put a notice in the paper to get it out in one go.
My lovely Dr friend has come up with a fab fund raising idea which, if it goes well could end up with some publicity in order to raise money for charity - that might get the word out, and in a very positive way as well.
More info to follow when we know if/when it is going ahead. Pun intended!
Basically, I'm waiting to hear tomorrow what Chemo drugs I'll get as this will influence whether or not my hair falls out. I'm still tempted to do something wild, even if it doesn't, as a way to stick two fingers up at Cancer.
So, a further update will come forth tomorrow no doubt. Would it be wrong to ask for Chemo that doesn't make me put on tons of weight? Losing my hair I can deal with. Getting fat as well would really add insult to injury.
Vain? Moi?
Maybe!!
My role was mainly PR, networking, troubleshooting, and camera-woman today, which was actually quite nice. I had the chance to chat to lots of clients that I have known for over 7 years, and have a good old catch up with lots of my husband's peers. I've also been called "remarkable" by one of the Directors of the firm I work for, which is rather nice. Apparently they are all very surprised at me being up and about and so active after my ops. It probably helped that I was standing on top of a piece of farm machinery at the time - well, I'm only 5'4 so I need all the help I can get when taking photos of tractors and crowds of people!
I'm feeling a bit off colour though, rather annoyingly, as I had my flu jab yesterday, which has coincided with the children coming out in a stinking cold - bleurgh . I shall get my own back though, as my husband and both children are going to have the jab next week too - if I can avoid them bringing any more germs home than absolutely necessary, and of course try and protect them against the nasty flu bugs that have been around in recent years, so much the better.
Not looking forward to tomorrow, obviously, but perhaps I will be surprised and get some reasonable news for a change. If nothing else, it will be interesting to see how many lymph nodes Mr Pain took out - from what I understand, everyone has a different number of nodes so it will be interesting to see how many I had. Not that it matters but one can't help but be curious.
In an attempt to curry favour, I've also made a batch of fudge for my lovely consultant, seeing as he was so keen on the box that I was given when I last saw him in hospital.
I'm rather chuffed actually - the last two attempts I have had at making fudge were awful, but last night's "quick fudge" recipe worked a treat. It's very chocolaty, but I don't think that is necessarily a bad thing.
For anyone that wants it, the recipe is as follows:
397g Can of condensed milk
450g Plain chocolate
2 tsps Vanilla extract
Chopped walnuts/almonds/similar if desired
Basically, heat the chocolate and condensed milk in the microwave until the chocolate has melted (2-3 mins), add the remainder of the ingredients and beat until smooth.
Pour into a 20 x 20cm square cake tin, lined with tin foil and allow to cool in the fridge for 2 hours.
Judging by the comments from the children this morning (who were allowed to try some tiny slivers), the recipe is a good one. I can feel a home made Christmas coming on!
I've had to tell a few more people today, which was a bit upsetting. It must be so hard for people to know how to react as well - I hate doing it.
I always try to be upbeat, but it does get me down. I'm so bloody tempted just to do a facebook post or put a notice in the paper to get it out in one go.
My lovely Dr friend has come up with a fab fund raising idea which, if it goes well could end up with some publicity in order to raise money for charity - that might get the word out, and in a very positive way as well.
More info to follow when we know if/when it is going ahead. Pun intended!
Basically, I'm waiting to hear tomorrow what Chemo drugs I'll get as this will influence whether or not my hair falls out. I'm still tempted to do something wild, even if it doesn't, as a way to stick two fingers up at Cancer.
So, a further update will come forth tomorrow no doubt. Would it be wrong to ask for Chemo that doesn't make me put on tons of weight? Losing my hair I can deal with. Getting fat as well would really add insult to injury.
Vain? Moi?
Maybe!!
Sunday 7 October 2012
It's like being back at school...
There's so much to learn! At least, it feels like it today.
The next and possibly last batch of results from the Axilla Node Clearance (ANC) come back on Wednesday, and my appointment is confirmed as being 10.10 am.
I have been merrily wandering around this week thinking that my results won't make much difference. After all, the cancer diagnosis isn't going to disappear so what will change? Having done rather a lot of reading, I'm feeling slightly more scared. At the moment, we know that 2 out of the 3 Sentinel nodes taken tested positive, which indicates a possible spread. Assuming that no more test positive, I'll be dancing. If I do have any more nodes that are positive, it will make things more serious.
In preparation for my meeting, I've been reading the NICE guidelines and latest quality statement on breast cancer treatment. A conversation with my breast care nurse spooked me earlier this week - I'm sure she mentioned something about a waiting list for chemo. I can't wait. I don't want to wait. I want to start the drugs, to get better, to start being able to plan my life again.
I want......doesn't get.
It's not worth crying over but I hate the build up to these bloody appointments.
The next and possibly last batch of results from the Axilla Node Clearance (ANC) come back on Wednesday, and my appointment is confirmed as being 10.10 am.
I have been merrily wandering around this week thinking that my results won't make much difference. After all, the cancer diagnosis isn't going to disappear so what will change? Having done rather a lot of reading, I'm feeling slightly more scared. At the moment, we know that 2 out of the 3 Sentinel nodes taken tested positive, which indicates a possible spread. Assuming that no more test positive, I'll be dancing. If I do have any more nodes that are positive, it will make things more serious.
In preparation for my meeting, I've been reading the NICE guidelines and latest quality statement on breast cancer treatment. A conversation with my breast care nurse spooked me earlier this week - I'm sure she mentioned something about a waiting list for chemo. I can't wait. I don't want to wait. I want to start the drugs, to get better, to start being able to plan my life again.
I want......doesn't get.
It's not worth crying over but I hate the build up to these bloody appointments.
Thursday 4 October 2012
I didn't see that coming...
I seem to be saying that a lot recently!
Tonight, after supper I thought that I would broach the subject of "mummy getting her hair cut for charity" with the biggest child.
This did NOT go down well.
Apparently I am not allowed to get my hair cut short, otherwise I won't be mummy any more.
Shit.
Looks like I am going to have to do a LOT of ground work with this one. Maybe choosing my new hairstyle will help?
I haven't read the children "Mummy's Lump" yet, because, well, it's too fucking depressing, but it seems that it might be time.
Shit shit shit.
Sorry for the swearing.
Oh, and we had an impromptu visit from our Vicar today, which was lovely, but somewhat of a shock. It still made me feel a bit like I'm going to die though, which I'm bloody well not, but it reminded me that whilst breast cancer is quite "curable", ish, (85% chance of cure is good, I know), it's still pretty serious. Something I had been trying to forget about.
Bollocks.
Sorry.
Tonight, after supper I thought that I would broach the subject of "mummy getting her hair cut for charity" with the biggest child.
This did NOT go down well.
Apparently I am not allowed to get my hair cut short, otherwise I won't be mummy any more.
Shit.
Looks like I am going to have to do a LOT of ground work with this one. Maybe choosing my new hairstyle will help?
I haven't read the children "Mummy's Lump" yet, because, well, it's too fucking depressing, but it seems that it might be time.
Shit shit shit.
Sorry for the swearing.
Oh, and we had an impromptu visit from our Vicar today, which was lovely, but somewhat of a shock. It still made me feel a bit like I'm going to die though, which I'm bloody well not, but it reminded me that whilst breast cancer is quite "curable", ish, (85% chance of cure is good, I know), it's still pretty serious. Something I had been trying to forget about.
Bollocks.
Sorry.
Tuesday 2 October 2012
Post op angst
I feel physicaly fine, so really I have nothing to complain about. No pain, very little swelling, a few bruises, but I was expecting them.
I'm quite surprised really, bearing in mind how much pain I had after the lymph node biopsies - it is a huge relief. Not that I am allowed to do anything. Feeling better doesn't allow me to lift or move my arm above 90 degrees in cease I damage myself without realising it.
I must stop complaining and count my blessings!
The children are coping really well, and our weekend and my daughters birthday also went well.
My poor husbands back is terribly sore which is making life for him rather difficult but on the whole, we are coping. I rang my office this morning and they are all fine but stressed and finding deadlines hard to meet. I think they will be okay though, I can't get stressed about it, as I have been "banned" from going in....I will have to have words with my boss. I know it is just because he cares, but it is rather frustrating.
I am feeling anxious again about not having anything to do, but I have been helping my husband with some farm related paperwork which is keeping me slightly occupied. I have also been doing a lot of walking, certainly about five miles each day, and I am feeling the benefits of that.
Slight weirdness this afternoon though. I had noticed after I got in from my walk this morning that my month old mastectomy scar had started to leak from a tiny point in the middle. It looks like a bit of scab (sorry for all the details) has softened and gone whitey yellow which is allowing liquid to seep through, which is pinky yellow. I am also feeling a little rough with a headache so popped up to the doctors and ended up with an antibiotic just to make sure there is no infection.
I am probably being over cautious, but having rung Macmillan, as I couldn't get hold of my breast care nurse, they said to get any change checked out, so I did.
I feel like a bit of a fraud though. Normally, I consider myself to be quite robust, but I don't trust my body at the moment. I is like I have lost a bit of faith in myself and am trying to second guess every little thing.
I am determined not to become a worry wart or hypochondriac, but there is a lot to learn about managing my health again. Well, at least it feels like it.
I don't want my life to be revolve around trips to the doctors.
Oh.
A bit late for that, isn't it!
On the plus side, I did have a lovely catch up with someone I haven't seen for a while, which was great. She also had great things to say about my consultant as her husband is also a doctor. Apparently, all surgeons are bastards, except for Mr Pain. He is the exception, which is good to know.
Tomorrow, theoretically, I am going to go to a fashion show hosted by Keeping Abreast, which looks like it will be excellent fun. Fun is needed at the moment. Nearly as much as sleep!
For the rest of tonight, I shall be calling people I haven't spoken to in a while to tell them what is happening. I have alluded in former posts, things are going to become more public than I would necessarily choose to make them, so I need to tell certain people before the smoke signals get too far.
If nothing else, I want to sort out my just giving page and start raising money for my charity haircut, and the longer I have to do that the better.
I'm quite surprised really, bearing in mind how much pain I had after the lymph node biopsies - it is a huge relief. Not that I am allowed to do anything. Feeling better doesn't allow me to lift or move my arm above 90 degrees in cease I damage myself without realising it.
I must stop complaining and count my blessings!
The children are coping really well, and our weekend and my daughters birthday also went well.
My poor husbands back is terribly sore which is making life for him rather difficult but on the whole, we are coping. I rang my office this morning and they are all fine but stressed and finding deadlines hard to meet. I think they will be okay though, I can't get stressed about it, as I have been "banned" from going in....I will have to have words with my boss. I know it is just because he cares, but it is rather frustrating.
I am feeling anxious again about not having anything to do, but I have been helping my husband with some farm related paperwork which is keeping me slightly occupied. I have also been doing a lot of walking, certainly about five miles each day, and I am feeling the benefits of that.
Slight weirdness this afternoon though. I had noticed after I got in from my walk this morning that my month old mastectomy scar had started to leak from a tiny point in the middle. It looks like a bit of scab (sorry for all the details) has softened and gone whitey yellow which is allowing liquid to seep through, which is pinky yellow. I am also feeling a little rough with a headache so popped up to the doctors and ended up with an antibiotic just to make sure there is no infection.
I am probably being over cautious, but having rung Macmillan, as I couldn't get hold of my breast care nurse, they said to get any change checked out, so I did.
I feel like a bit of a fraud though. Normally, I consider myself to be quite robust, but I don't trust my body at the moment. I is like I have lost a bit of faith in myself and am trying to second guess every little thing.
I am determined not to become a worry wart or hypochondriac, but there is a lot to learn about managing my health again. Well, at least it feels like it.
I don't want my life to be revolve around trips to the doctors.
Oh.
A bit late for that, isn't it!
On the plus side, I did have a lovely catch up with someone I haven't seen for a while, which was great. She also had great things to say about my consultant as her husband is also a doctor. Apparently, all surgeons are bastards, except for Mr Pain. He is the exception, which is good to know.
Tomorrow, theoretically, I am going to go to a fashion show hosted by Keeping Abreast, which looks like it will be excellent fun. Fun is needed at the moment. Nearly as much as sleep!
For the rest of tonight, I shall be calling people I haven't spoken to in a while to tell them what is happening. I have alluded in former posts, things are going to become more public than I would necessarily choose to make them, so I need to tell certain people before the smoke signals get too far.
If nothing else, I want to sort out my just giving page and start raising money for my charity haircut, and the longer I have to do that the better.
Saturday 29 September 2012
I'm home!
Just a very quick note to say I am home, and all things considered had a reasonable day.
I was seen very promptly at 7.25am, taken to the room I was to share with four other unfortunates, and kicked my heels for a bit until a nurse came to take my essential information and do the MRSA swabs which were as fun as I remembered from last time.
My consultant popped in at about 8.15am so I had a chance to chat with one or two of the other ladies that were in, which was really nice and made me feel far more confident, oddly, as I had been through a lot of what they were about to go through before so was able to reassure them a bit. I hope that doesn't sound too partonising, particularly when you think that I was the youngest in there by at least 15 years.
As I have been randomised for the Lymphodoema trial, my right arm was measured and tested with electronic "pulses", similar to a Tens machine, and these measurements will be used as a base against which to compare future measurements before and after massage and other treatments and then compared to other ladies results. I found it all rather intriguing and was also highly entertained when my consultant found that the three electric wires were totally tangled together! I landed myself the job of untangling them after I had been measured, which was fab as it gave me something to do. Anything to be helpful.
The only habit my consultant has which I don't like is he brigs his steaming cup of filter coffee round with him, and to someone who has been starved of caffeine for the day (yeah yeah I know, only four hours at this point) it seems a bit mean!! He was kind enough to let me get a good waft though....
I was second in the list, and went in at about 9.45ish I think. I had a different anaesthetist this time, who was also lovely, but did ask why the hell I was there at the grand old age of 33..... I think he put it slightly nicer than that, and called me a lovely lady (lovely, despite the lack of coffee - we like him a lot), but still, I do rather share his sentiment in that regard.
My "gin and tonic" was administered very gently, and very quickly, so I didn't get as nervous as last time - I am becoming a seasoned pro now!
The next thing I knew, it was about 10.30am and I was coming round from the anaesthetic. I felt a bit sore, so was given some rather excellent intravenous drugs, which evidently makes the continued presence of a cannula worth it.
The op went well, I had no complications, and the nerve block that I have had has made me extremely comfortable, but I will still need to be very careful. Post it notes required all over the house to remind me of this.
I was left some fabulous fudge at reception by a friend, and once I got back to the ward I cracked it open to celebrate. Yummy, thank you - you know who you are. After a while I was able to get dressed and saw my consultant, who also likes fudge apparently! We had a nice natter, and he disappeared for the weekend or what is left of it.
I think I got home at about 3.30pm in the end, and had some nice cuddles with the children, who have had a lovely day with our friends but hopefully missed me a bit.
Luxury this afternoon though in that I did escape upstairs for a nap and only reappeared when the children were safely tucked up in bed. Bliss, thank you. You know who you are too!
I had very little pain this evening, but have taken a few painkillers so I remain comfortable. Other than the anti inflammatories I shall try and cut them right back though - I hate taking them for any length of time, and I will know how much or how little I can do if I can actually feel something.
It is now midnight, and having been up since about 4.30 am I really ought to go to sleep!
I have had a good chat with my lovely Dr friend about options for ports for chemo and various other things, which has helped a huge amount so I have a lot to think about but I feel more informed and confident in my choices.
Maybe I will start again tomorrow. Just a week or so, and I will know a lot more about my treatment plan etc and can start phase two of the fight back.
For now, I will go to be with the fond memory that this time four years ago my waters were about to go with my darling daughter, and one of the brightest lights in my life was about to arrive.
Happy birthday darling girl. I love you too too too too.
I was seen very promptly at 7.25am, taken to the room I was to share with four other unfortunates, and kicked my heels for a bit until a nurse came to take my essential information and do the MRSA swabs which were as fun as I remembered from last time.
My consultant popped in at about 8.15am so I had a chance to chat with one or two of the other ladies that were in, which was really nice and made me feel far more confident, oddly, as I had been through a lot of what they were about to go through before so was able to reassure them a bit. I hope that doesn't sound too partonising, particularly when you think that I was the youngest in there by at least 15 years.
As I have been randomised for the Lymphodoema trial, my right arm was measured and tested with electronic "pulses", similar to a Tens machine, and these measurements will be used as a base against which to compare future measurements before and after massage and other treatments and then compared to other ladies results. I found it all rather intriguing and was also highly entertained when my consultant found that the three electric wires were totally tangled together! I landed myself the job of untangling them after I had been measured, which was fab as it gave me something to do. Anything to be helpful.
The only habit my consultant has which I don't like is he brigs his steaming cup of filter coffee round with him, and to someone who has been starved of caffeine for the day (yeah yeah I know, only four hours at this point) it seems a bit mean!! He was kind enough to let me get a good waft though....
I was second in the list, and went in at about 9.45ish I think. I had a different anaesthetist this time, who was also lovely, but did ask why the hell I was there at the grand old age of 33..... I think he put it slightly nicer than that, and called me a lovely lady (lovely, despite the lack of coffee - we like him a lot), but still, I do rather share his sentiment in that regard.
My "gin and tonic" was administered very gently, and very quickly, so I didn't get as nervous as last time - I am becoming a seasoned pro now!
The next thing I knew, it was about 10.30am and I was coming round from the anaesthetic. I felt a bit sore, so was given some rather excellent intravenous drugs, which evidently makes the continued presence of a cannula worth it.
The op went well, I had no complications, and the nerve block that I have had has made me extremely comfortable, but I will still need to be very careful. Post it notes required all over the house to remind me of this.
I was left some fabulous fudge at reception by a friend, and once I got back to the ward I cracked it open to celebrate. Yummy, thank you - you know who you are. After a while I was able to get dressed and saw my consultant, who also likes fudge apparently! We had a nice natter, and he disappeared for the weekend or what is left of it.
I think I got home at about 3.30pm in the end, and had some nice cuddles with the children, who have had a lovely day with our friends but hopefully missed me a bit.
Luxury this afternoon though in that I did escape upstairs for a nap and only reappeared when the children were safely tucked up in bed. Bliss, thank you. You know who you are too!
I had very little pain this evening, but have taken a few painkillers so I remain comfortable. Other than the anti inflammatories I shall try and cut them right back though - I hate taking them for any length of time, and I will know how much or how little I can do if I can actually feel something.
It is now midnight, and having been up since about 4.30 am I really ought to go to sleep!
I have had a good chat with my lovely Dr friend about options for ports for chemo and various other things, which has helped a huge amount so I have a lot to think about but I feel more informed and confident in my choices.
Maybe I will start again tomorrow. Just a week or so, and I will know a lot more about my treatment plan etc and can start phase two of the fight back.
For now, I will go to be with the fond memory that this time four years ago my waters were about to go with my darling daughter, and one of the brightest lights in my life was about to arrive.
Happy birthday darling girl. I love you too too too too.
Friday 28 September 2012
Packing
I don't normally like packing. Liking it even less tonight. However, I am, roughly speaking, packed for my day trip to hospital tomorrow, with spare knickers, just in case. Apologies, you don't really need to know that I have spare underwear, but packing them seemed to make sense to me - I'm trying to invoke the law of sod in reverse again i.e. if I pack them I won't need them.
If I do end up staying in I have at least wrapped all of the biggest's birthday presents and written the cards in time for Sunday, so if she needs to be distracted then it will be pretty easy.
We have friends on the way tonight to stay and look after the children, which is lovely of them. My friend very sadly lost her mother to cancer last year and she is a very talented Doctor, so she has an extremely good understanding of what I am going through.
I'm not sure how I feel this time. I am definitely nervous, particularly as everyone in the know seems to think I'm going to be in a lot more pain this time than last time.... nice of them to tell me. Hopefully it won't be too bad - I was in pretty good shape after having the mastectomy, so how bad can a few nodes be?
I've already had the most "disfiguring" surgery - other than some cording which I can hopefully stretch out, I am already used to the changes that my body has gone through. Truth be told, my scar actually looks amazing. There is no swelling, and most of the soreness has gone. Friends and colleagues happily tell me that they can't tell what has been done, and I actually was brave enough to wear a low ish cut v necked dress today and my scar didn't show, which is excellent. I certainly don't want a new wardrobe.
I've got to be in for 7.30am so we shall leave a bit before 7am. An extremely kind person has left a box of fudge for me at the desk of the day surgery unit, so I'll have something to munch on after I come round.
I'm half tempted to bake another cake or take a box of chocolates for the ladies on the day surgery unit, as they were all so lovely last time. Would that be weird?
This is not the most exciting post I have ever written, so for that I apologise. I think that my brain is a bit frazzled and can only cope with simple thoughts. I have half a post drafted, in my brain, on fatalism and realism, which I shall share at some point, once it and I am more coherent.
So, I shall sign off for now, with the very good news that I did manage to drag myself to work this morning, and sold 157 paintings by auction. The sale went extremely well, and the top price achieved for one lot was £13,000 before buyers premium and all taxes. Far less chocolate teapot like today. A superb result.
I'm extremely proud of my team - they have done a fab job in my absence but made it known that I am very missed, which was extremely kind of them.
Anyhoo, that is it from me for now. I shall update, God willing, tomorrow night.
God bless.
Rebecca x
If I do end up staying in I have at least wrapped all of the biggest's birthday presents and written the cards in time for Sunday, so if she needs to be distracted then it will be pretty easy.
We have friends on the way tonight to stay and look after the children, which is lovely of them. My friend very sadly lost her mother to cancer last year and she is a very talented Doctor, so she has an extremely good understanding of what I am going through.
I'm not sure how I feel this time. I am definitely nervous, particularly as everyone in the know seems to think I'm going to be in a lot more pain this time than last time.... nice of them to tell me. Hopefully it won't be too bad - I was in pretty good shape after having the mastectomy, so how bad can a few nodes be?
I've already had the most "disfiguring" surgery - other than some cording which I can hopefully stretch out, I am already used to the changes that my body has gone through. Truth be told, my scar actually looks amazing. There is no swelling, and most of the soreness has gone. Friends and colleagues happily tell me that they can't tell what has been done, and I actually was brave enough to wear a low ish cut v necked dress today and my scar didn't show, which is excellent. I certainly don't want a new wardrobe.
I've got to be in for 7.30am so we shall leave a bit before 7am. An extremely kind person has left a box of fudge for me at the desk of the day surgery unit, so I'll have something to munch on after I come round.
I'm half tempted to bake another cake or take a box of chocolates for the ladies on the day surgery unit, as they were all so lovely last time. Would that be weird?
This is not the most exciting post I have ever written, so for that I apologise. I think that my brain is a bit frazzled and can only cope with simple thoughts. I have half a post drafted, in my brain, on fatalism and realism, which I shall share at some point, once it and I am more coherent.
So, I shall sign off for now, with the very good news that I did manage to drag myself to work this morning, and sold 157 paintings by auction. The sale went extremely well, and the top price achieved for one lot was £13,000 before buyers premium and all taxes. Far less chocolate teapot like today. A superb result.
I'm extremely proud of my team - they have done a fab job in my absence but made it known that I am very missed, which was extremely kind of them.
Anyhoo, that is it from me for now. I shall update, God willing, tomorrow night.
God bless.
Rebecca x
Thursday 27 September 2012
Baking frenzy
Birthday cake, baked and iced. Cake for staff at work, done. Cake for husband and children tomorrow so they actually have one to eat (the poor deprived souls), done, Lasagne x 3, done and 2 in the freezer... And so it goes.
As you can tell, my back is feeling better today. I can actually stand up, which helps a lot.
It is now 11pm or thereabouts and I haven't really relaxed all day. Hopefully I shall go to work tomorrow, as we will be neck deep in baked goods otherwise.
I think, after the last few days of relative inactivity I have grasped the opportunity to be useful in an attempt to keep my mind off the inevitable. My op on Saturday is fast approaching and I am getting nervous. In fairness, the GA last time was fine, and I didn't shake afterwards which I usually do after any anaesthetic, but still, the fear is there about not waking up.
I also hope that if there is any cancer left that they get it all this time. I may have said this before, but in less than two weeks we will know how bad it is, and how far it has spread into my lymphatic system. If it has at all - it is entirely possible that the remaining nodes will come back clear and have been removed for nought. Fingers crossed.
I have been trying to explain to my parents and others in my family who shall not be named, that the Drs weren't being inept by not doing the full clearance last time, they were trying to save me unnecessary surgery that has a 1 in 6 chance of causing Lymphodoema, which sounds rather unpleasant. In fact, judging by how odd my arm has felt over the lag two days I suspect that I have a touch of it already.
On that basis, I am doubly delighted that I have been randomly selected to take part in a local trial which effectively means I shall get extra therapy and training in simple lymphatic massage as well as other support, to try and ensure that I don't develop Lymphodoema or, if I do, that it can be managed so as to cause as little discomfort as possible.
Blindly, I am starting to feel the strain though.
We have a few things going on at home on the farm too, and as a result my condition is most likely going to become very public, which is slightly scary. It is for the greater good, but still, the control is going to leave my hands. Thinking laterally it is only a matter of time though, really, seeing as I will be starting chemo next month. There isn't much chance of me being able to hide it for that much longer.
Sorry, I know I am being extremely cryptic!
So, the world will start to know from tomorrow, or today as it is now morning! I'm going to make the best out of a bad situation and other than having a few more small panics, I will organise a Charity haircut and just giving account and start raising money.
Watch this space for more details.
As you can tell, my back is feeling better today. I can actually stand up, which helps a lot.
It is now 11pm or thereabouts and I haven't really relaxed all day. Hopefully I shall go to work tomorrow, as we will be neck deep in baked goods otherwise.
I think, after the last few days of relative inactivity I have grasped the opportunity to be useful in an attempt to keep my mind off the inevitable. My op on Saturday is fast approaching and I am getting nervous. In fairness, the GA last time was fine, and I didn't shake afterwards which I usually do after any anaesthetic, but still, the fear is there about not waking up.
I also hope that if there is any cancer left that they get it all this time. I may have said this before, but in less than two weeks we will know how bad it is, and how far it has spread into my lymphatic system. If it has at all - it is entirely possible that the remaining nodes will come back clear and have been removed for nought. Fingers crossed.
I have been trying to explain to my parents and others in my family who shall not be named, that the Drs weren't being inept by not doing the full clearance last time, they were trying to save me unnecessary surgery that has a 1 in 6 chance of causing Lymphodoema, which sounds rather unpleasant. In fact, judging by how odd my arm has felt over the lag two days I suspect that I have a touch of it already.
On that basis, I am doubly delighted that I have been randomly selected to take part in a local trial which effectively means I shall get extra therapy and training in simple lymphatic massage as well as other support, to try and ensure that I don't develop Lymphodoema or, if I do, that it can be managed so as to cause as little discomfort as possible.
Blindly, I am starting to feel the strain though.
We have a few things going on at home on the farm too, and as a result my condition is most likely going to become very public, which is slightly scary. It is for the greater good, but still, the control is going to leave my hands. Thinking laterally it is only a matter of time though, really, seeing as I will be starting chemo next month. There isn't much chance of me being able to hide it for that much longer.
Sorry, I know I am being extremely cryptic!
So, the world will start to know from tomorrow, or today as it is now morning! I'm going to make the best out of a bad situation and other than having a few more small panics, I will organise a Charity haircut and just giving account and start raising money.
Watch this space for more details.
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