Sunday 27 January 2013

So near but yet so far....

What are we, day 4 post chemo? Something like that.

I really thought I had managed to avoid the side effects this time, but it is fair to say that I have well and truly learnt otherwise.

Thursday, felt dicey and wobbly, but not sick. Heart racing a bit and very tired but put that down to anti-emetics. Dragged myself out for a small walk but otherwise did very very little. 

Friday, had to do more due to planned weekend activities, but managed to push myself and go for a longer walk (but fortunately not unaccompanied - not even I am that stupid at the minute), didn't feel too awful other than tiredness. Managed to get food preparation done and a cake cooked, but not really hard work - not like I'm used to.

Saturday, we were shooting, and I felt okay, so I did manage to stay outside all day as one friend kindly had the biggest child, and the smallest was ably looked after by a combination of all the guns (who pushed the pushchair in the snow) and another wonderful friend in the afternoon. Lots of dizzy spells, but all in all not too awful or so I thought.

Saturday evening was lovely - the benefit of having a houseful is that everyone pitches in, helps, and I think that a fun time was had by all. Certainly, I did and it really perked me up having everyone there. 

Saturday night/early Sunday morning, and all of today though has been agony. Joint pain, mouth and throat pain (ulcers forming, I think/just generally the lining of my mouth and throat seems to be on fire) - I can genuinely say that I'm in as much pain as I was when someone drove into my car last year. Not entertained.

I've even been back to bed. Twice.  And I haven't been for a walk at all, which is rather unusual for me to say the least.

I am ridiculously disappointed, which I know is ridiculous, as I achieved so much yesterday, but it has totally set me back and to be honest, scared me a bit. 

Sorry, I know I'm wallowing, but it even hurts to blink.

My poor husband has really had to struggle to get anything done work wise today - fortunately the children have been able to go out and help to do pigs as the snow has gone, but he's going to have a long week next week. [Sigh]. 

I know it isn't forever, but I am rather a drain on resources today.....

Thursday 24 January 2013

4 down, 2 to go!!

And so far, I don't feel like utter tripe, which is both a huge relief and very scary! Daft, I know, but I am so used to feeling rubbish so soon it's making me a bit nervous - when is it going to "get me", and how?

For now, I'm going to make the most of it and try and get outside for a walk today as it isn't yet snowing or freezing again yet. Then I might catch a nap before the children come home, and get another early night.

I fell asleep during chemo yesterday, in full view of the nurses desk which was, apparently, most entertaining! I'm sure I can blame it on copious amounts of sedatives.

Yesterday's session was okay - hectic, but okay. It did make me a bit on edge that I had to be stationed right in front of the nurses station this time - apparently this is because it is quite a nasty drug and as it's only one, via drip (as opposed to 3 drugs injected into the drip) no one stays with you the whole time, so you need to be visible and more easily accessible for a stretcher if needed......(Frick!)

Hey ho. Pillows, not stretcher needed, and we were in and out in a little over 4.5hrs. As soon as I got home I went to bed (5.30) and woke at 4.30 briefly, then about 6 I think and was up for the day.

The steroids (Dexamethosone) are behaving so far (phew) but as instructed by my GP I'm on as few calories as possible to try and avoid unnecessary weight gain. Frankly, I don't feel like eating much, but I think it is more of a case of trying desperately to ignore the carb cravings.....

Not much else is happening. My husband is, as always, being AMAZING and I have no idea how he is doing it, with everything else (work, children etc) that he has to cope with. I know he signed up for the whole "in sickness and in health" deal when we got married, but it's quite one thing saying it, and quite another having to deal with a loved one who is going through this tripe. I sure as hell don't know how he sits there watching me being pumped full of chemo in such a calm fashion, along with dealing with the sickness, stroppiness (which I really do try to keep a lid on but sometimes the stress does get to me), tiredness, and of course, he's having to pick up a lot of the housework pieces and childcare. 

Darling, if you are reading this, words can never really completely properly and utterly explain how grateful I am, and what an inspiration you and the children are to me. Hopefully, I'll be able to make it all up to you when all of this is over. Don't forget, that trip to Vegas and surrounds for our joint 40th is in the diary.

All my love, to my wonderful husband, parents, children and everyone else I haven't mentioned (there are very many),

Rebecca x

Monday 21 January 2013

Bloody snow, heart scans, ECG's and patheticness....

Today did not start well with the arrival of yet more snow. Ridiculous. Even the children are fed up with it now.

We weren't quite up on time either as it is sooooo cold I didn't want to get up so I managed to persuade the youngest to stay in bed with a few cuddles. He does give possibly the best full on body hugs in the world, ever.

I just about got the children dressed, hair brushed and eating breakfast before I realised I wasn't at all organised, the car was still cold and not packed with nursery things, and I hadn't yet had a shower. Hey ho. Plenty of time to drop the children off at nursery, go to the GP at 9.40 then get to the hospital for 11am. All was moderately calm until I was packing my notes and realised that I had mis-read the time on my appointment letter and I actually had to be at the hospital at 9.50am. Botheration. With bells on.

Fortunately, someone must have been looking out for me, as I managed to get the children to nursery without getting stuck in snow (no mean feat with our country lanes, trust me), and myself to the hospital, with about 90 seconds to spare. Phew. Time for a sit down.

Amazingly, the amazing hospital staff seemed to be running everything completely under control and certainly, all seemed to have managed to get to work despite the awful roads - something many many many people in Norfolk really ought to learn how to do. My appointment was pretty much on time and I was taken through for an ECG which was quick and painless, then I was called to wait whilst my consultant looked through what appears to be an extremely thick file which apparently, belongs to me!

So, apparently my consultant is extremely tall, for a lady! She is however, lovely and doesn't beat around the bush at all. I decided that we'd get on well when I saw a pair of Le Chameau wellington boots just inside the door.....similar interests and all that.

Having had a look at the ECG, echocardiagram results and listening to my heart, taking blood pressure etc it would seem that my heart is improving with the drugs, despite the chemo, therefore we've decided that the lower EF is what is "normal for me" as other than a few odd feelings here and there, the heart function seems to be okay, and there is no leaking from the valve.

So, celebration time in many ways, as not only am I allowed to "exert myself" i.e. exercise normally, get on a horse, that sort of thing, but my cardiologist is also going to advise that I can try Herceptin, which is fantastic news. 

Much relief.

The only other chore to get done whilst at the hospital is a blood test via the Chemo ward, so I popped round and was seen fairly promptly. I forgot to put Emla (numbing cream) on before going to the hospital which was annoying, as I do find the big needle that goes into the port quite sore, but it will serve as a reminder for Wednesday.

Rather annoyingly I seem to have developed a physical reaction to being in the Chemo ward, which is nausea - as if I didn't already have enough of this going on already. I've spent the rest of the day feeling on the verge of being sick, so I'm going to have to develop a coping mechanism rather quickly. Very pathetic. Quite what I'm going to be like on Chemo day I don't know. Hopefully the sedatives will have kicked in by that point, as I've got to start taking them and the steroids tomorrow.......either that or I'll have to dunk my head in the snow.

Sunday 20 January 2013

Cancer is a bastard

No, not me. I'm fine.

Furious and upset, but "fine".

I've just heard that a friend who has been battling cancer for a while (understatement) has had to have an emergency operation this afternoon, and I am just so furious on her behalf that she is having to go through such a shit shit time.

So, if you have any positive vibes spare, please send them my friend's way, and tell cancer and it's side effects to go and take a flying F***.

MM, I'm thinking of you and sending much love to you and your family.

Take care lovely.

R xx

Tuesday 15 January 2013

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.....

Sunday 6 January 2013

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.....

 

Tuesday 1 January 2013

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!!