......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....
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