Cover me, I'm going in

So, it's chemo day again tomorrow and I am rather dreading it. I had a blood test at the chemo ward on Monday which was bad enough and left me feeling sick by the time I left, so the thought of tomorrow is not good. 

I have prepared the children by telling them that tomorrow is medicine days so I might not be very well afterwards, and certainly the eldest seems to understand and has said that she will look after me, which is very sweet. 

I have new anti emetics to try too, on top of everything else so fingers crossed it works. I have put most of the weight back on over Christmas but I would rather lose some through hard work and exercise rather than through not eating and drinking for two days.....

So, despite not hearing from me for a couple of weeks, don't be surprised if it is another few days before you hear from me again! I'm going in, but at least this time when I come out I will be half way there. That is something to really look forward to.

A belated Merry Christmas

and Happy New Year!

I hope that yours went well. Ours did, surprisingly, or not so surprisingly bearing in mind how many wonderful people went to so much effort to make ours so wonderful.

My parents, sister, and her husband visited and stayed in a holiday cottage just down the road from us, so we had company every day, yet we were also all able to retain some privacy and space - not something to be taken for granted.

The children had a wonderful time, were utterly spoilt, and also got taken to the beach on the Sunday before Christmas, which was fab - it was one of the best days weather wise over the festive period, and my parents introduced their dogs to the sea for the first time, which was quite entertaining. At least they seem to be able to swim!

I have been spoilt rotten by by wonderful husband, which is lovely. I also received the most amazing Christmas present as well in the form of a ring.

 I'm feeling extremely guilty actually as although I've done a lot of running around doing cooking and Christmassy things, I don't necessarily feel like I've done a lot of looking after my husband and on occasion, the children. Hopefully I'll be able to make it up to them in the following months.

New Years Eve was very relaxed and we went to the beach again today, which was extremely cold, but well worth the trip. My son was rather scared of the sea though, which was odd but he was enjoying himself by the end of the afternoon and didn't really want to come home. 

We had a fab picture taken of us as a family, which is rare, and I'm not even embarrassed about my headscarf.

I haven't mentioned it before now for some reason, but I cannot tell you how wonderful the children have been about the whole hair loss, wig, mummy being useless thing. They have been amazing and seem to have taken it all in their stride. They also like to have an input as to whether mummy wears her "new hair" (copyright to the smallest child) or one of her hats - whatever works, but I can't tell you what a relief it is that they aren't embarrassed about it.

Anyway, enough waffle. Here's the photo of us at the beach today, and during the next few days it's going to be a fabulous reminder of why I'm putting myself through the hell that is chemotherapy.

 

Oh yes, my hair....

...... or lack thereof.....

My hair hung on pretty well actually. It started to fall out at around 17 days after my first chemo, then far more started to come out after the second one and I kept finding piles of it here there and everywhere. When I was taking the children for a walk on one particular day I'm pretty sure that I saw a clump fly past as well....

So, galvanised by the prospect of actually going bald, I booked another appointment for a wig fitting and was rather delighted to come away with not one, but two wigs, and a rather short haircut.

With chemo 3 fast approaching, I have very very very little hair left on my head, and what I have is downy soft and very light in colour. The hair on my legs is still growing, albeit very slowly - typical that I can't get out of that chore!

I don't think that I'll ever get used to looking in the mirror and seeing myself bald. I'll certainly never underestimate the thermal insulating qualities of hair again. 

On the plus side, I still have my eyebrows and my eye lashes, so I don't look too hideous when I just have a hat on.

The wigs are okay - I prefer one to the other, which is natural, so I might be a seller on ebay at some point soon. The only problem is the itchiness after a few hours, and the occasional headache which I am sure is caused by the "grippers" just above the ears. 

Anyway, I musn't complain as all in all (ridiculous sickness last time notwithstanding), things aren't too bad at the moment.

On the final plus side, I've had the traditional "headlice email" from nursery so I've got to do the children's heads again. This time, I shall miss out on the treatment as there is nowhere for the little blighters to hide on me!!

Many many updates....

......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......

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

 

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.....

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.