I am a bad blogger.....

...... so before I begin, many apologies for the lack of regularity in my blogging. I hope you're all well and not snowed in or frozen.

We've had a busy couple of weeks - I've been to work a few times, I've got a few things done for my husband, I've actually felt well enough to play with my young horse Bunny.... and so it goes.

Scarily, we're 7 days away from Chemo No 4 and, rather annoyingly, I'm starting to get nervous again. 

I'm changing drugs next time, to Docetaxol (Taxotere) from FEC. Hopefully, this drug won't make me as sick as I was on the FEC, but I shall certainly be asking/begging for the same anti sickness drug as I had last time in order to make sure!

The downside is that I've got to take the steroids this time, to try and avoid too much fluid retention, and I am dreading this. It's only for 3 days each time, but I can't get my brain round it. I am not ready to balloon, I really don't think my confidence, or lack thereof, can cope with it.

As it is, we went to a party on Saturday night and I ended up so unsure of what to wear I asked my wonderful Twitterati for help!

What doesn't help is that I've got a socking great mouth ulcer at the back of my mouth, and a horribly sore throat, so I'm definitely under the weather. I'm still planning to run my auction and sell on Friday, but I might not have a voice by the end of it.

Lack of body confidence in so many ways - totally daft, but I really don't know whether I should push myself as much as I normally do, or whether I should be "saving my strength" for chemo. 

This is so not me, at all, and I'm finding it very frustrating. Normally, I wouldn't even consider going to the Doctors for a sore throat, sore ears etc, but "normal" doesn't live here anymore.

So, what's on the cards next week? I FINALLY get to see the cardiologist, which I am "looking forward" to, as this will hopefully give me a few answers as to how I can live my life, whether I can take up running, and properly exert myself like I used to. Well, within reason at the moment anyway.

Trying to be positive all the time is tiring, but I seem to be pulling it off, which is a relief. I was even complimented on my hairstyle on Saturday night, which was rather nice.

I keep reminding myself that I'm halfway - perhaps I should start putting post it notes up round the house with affirmations and positive statements on? It would vertainly entertain the children anyway.....

Half way there!

What a relief. 3 FEC down, and 3 Taxotere to go.

And there was no vomit this time. Quite an achievement when comparing it to last time's hourly trips to the bathroom.

I may even kiss Dr Evil next time I see him. Well, that might be over stretching the mark, but he'll certainly get a hug.

I was seen fairly close to 9am, and despite forgetting to put numbing cream on the port it didn't hurt too much to get hooked up. Actually, the chemo session didn't take too long but I waited for the whole bag of saline to go through which seemed to take forever, but eventually we got home at about 12pm.

As well as the new expensive anti-emetic (Emend), I took all of the other ones as well so must have rattled fairly, but from memory, I slept the rest of the day, and possibly night, cat napping on the sofa.

The only problems I've had this time are low blood pressure, racing heart (possibly caused by the Emend) and dizziness, which is annoying, but a reasonable exchange for not being sick. So, I've had to take it fairly steady but did manage a 2 mile walk yesterday (Saturday) and a shorter walk as well as a trip to get my blood pressure checked on the Friday, so all in all a better week.

It's a bit of a non-update really isn't it? Suvived chemo, and it wasn't awful! Admittedly, I'm still having problems eating, drinking, and swallowing my own saliva (WTVF?) but all in all it hasn't been a bad week.

I've even managed to get the Christmas decorations down on time, and without the smallest people noticing their absence, which is a miracle in itself.....

 

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