Monday 11th February 2008

Monday
Got a call from Dr Alex at the Marsden this morning; it seems that they just got the results of my thyroid function test and the TSH is way too high. TSH is produced when the body is short of thyroxin and apparently the depression of the thyroid function is a known side effects of the trial drugs I’m on and even people who don’t normally have thyroid problems tend to end up getting put on to thyroxin drugs. I’ve had an under-active thyroid for years and I’m already taking 125 mgs of thyroxin daily, I agreed with my GP to put it up to 150mg and the Marsden will check again in a month when we may need to increase the dose again; it’s safer to increase it gradually as a sudden increase can cause problems.

Anyway in a way the thyroid thing is really good news as it’s something which can be controlled by medication and it may be an explanation for why I’ve been so tired and lethargic recently. We just put it down to an inevitable side effect of the chemo so it can be treated that will be a great bonus to my quality of life.

Felt much better today anyway, the diarrhoea seems to be clearing up and I did have a little more energy so we went out for a walk to the reservoir and as the weather was so beautiful we walked for about 40 minutes. After a nap we then did a big supermarket shop which was very useful and I even had the energy to cook dinner so it was a very good day.

Phil finished reading the Phoenix and the Carpet which was such a great book it felt like saying goodbye to a friend; still we have another book waiting, the Treasure Hunters is by the same author so we’ll see if it is as good.

Sunday 10th February 2008

Sunday
Feeling better in the morning so we went out to Chelmsford while we had the chance, we bought some teas in Whittards, some olives and sun dried tomatoes in Oil and Vinegar and looked in the bookshops. Phil has a book token and we were expecting to buy lots of books but didn’t see enough that we wanted; I was starting to feel tired so it was hard to stay interested and of course Phil is so attuned to my moods now that he was distracted too.

On the way back to the car we heard from Richie and Caroline who phoned to say that they were bring Dad over to visit us for lunch. It was lovely to see then and we had a nice lunch courtesy of them but I was really flagging by the time they went home so it was off to bed for my nap.

Later on just as dusk was falling we did manage to go out for a quick walk; it was a bit colder than it would have been earlier but the setting sun turned the sky into a sheet of gold and it was quite beautiful to see the skeletons of the trees against such a backdrop.

Saturday
Diarrhoea set in again but it’s not quite as bad as last time, I’m feeling ill and painful for about 1/2 an hour after each bout rather than all day. We had intended to go out for a long shopping trip but in the end all I could manage was a quick trip to the library and the local shop for lunch then I went home for a nap. Then in the afternoon we were just ready to set out for a walk when the diarrhoea struck again and by the time I felt better it was getting dark.

Never mind tomorrow may be better and the weather is supposed to hold for a few days.

Friday
As usual on day 4 I was feeling pretty grotty all day, very fatigued and achy. It’s difficult to describe the nearest thing is that you feel like you are coming down with the flu. We did manage to go out for a quick walk on the easy path at Norsey woods in the afternoon and I felt better for the fresh air and exercise but 20 minutes was quite enough to make me exhausted again.

Thursday
Phil was out working in London for the day, I wasn’t feeling up to going out for a walk by myself (Phil wouldn’t be happy if I fell and hurt myself by going out on my own). I was feeling a bit lethargic and the bloody pump was still alarming very time my arm bent so I couldn’t do knitting, typing or very much else (you try to keep your left arm straight and get on with household stuff). Anyway I eventually gave up and watched some episodes of Tenko (I have loads saved on Sky+)

When Phil came home we did the pump disconnection etc; Phil had got the pump disconnect and flushing down pat now but it’s the first time we changed the staylock device so it was quite scary. Still we managed it fine in the end and it’s more comfortable now.

Wednesday 6th February 2008

Wednesday
Feeling pretty good, all the usual side effects but less pronounced than usual, I imagine this is the bonus from having a slightly lighter dose this time. The main irritation is that my pump keeps alarming every time I bend my left elbow for more than a few seconds. I think it’s because the nurse moved the line slightly sideways when she changed the staylock device; it makes typing difficult and I can’t knit which is annoying. Phil is going to move it when he disconnects my pump tomorrow.

We managed a 20 minute walk on the flat easy path in Norsey woods this morning and then I had a friend visit in the afternoon. Phil made us pancakes; he’s a very strange bunny rabbit because he loves making pancakes but doesn’t like to eat them which suits me down to the ground!

Early night tonight because Phil has to get up at the crack of dawn tomorrow as he’s training in London but he still read me some book before we went to sleep.

Tuesday 5th February 2008

Tuesday
It was heavy rain on most of the drive so we were 15 minutes late but it wasn’t a problem as they can’t do all the blood tests at the same time so in one way it’s quite convenient if some people arrive a little after 9am.

My white blood cells were a little low again and the diarrhoea is causing the doctor a little concern but as my results were so positive at the last scan we want to keep the impetus going. As I’m so young (comparatively) and so healthy with no sign of infection he decided to go ahead with treatment but with a slightly reduced dose as this may help to minimise the side effects while keeping up the pressure in reducing the tumours.

Everything went well, finished treatment at about 20 to 6 and the drive home was better so we were tired but okay.

Monday
Good day again. Saw a friend in the morning and did a bit of Reflexology practice (I do so miss the therapy and Reflexology is a good one to start with as it’s sitting down), I felt very energised and happy afterwards!

After lunch we went off to visit Dad but stopped off at Hockley woods for a walk on the way, we did 40 minutes again but it was hilly so a much stiffer workout than yesterday. At Dad’s I played cards with him while Phil got on with some work on his portable, I think her enjoyed it even if it was only for a couple of hours. Then Phil decided it was time for my nap (I was pretty tired by then) and we came home.

Slept badly but I usually do on the pre-chemo nights I think it’s the stress of wondering if it will happen, what the traffic will be like etc combined with the knowledge that we have to get up at 6am which is much earlier than normal.

Sunday
Found out that our local vet isn’t open on Sundays but there is a backup vet with normal prices about 20 minutes away. Put Pushkin in the car and drove there, I was actually quite relieved when she cried the whole way as this is her usual behaviours so she’s not THAT ill. It did pall eventually and we were very frazzled by the time we got there. The vet confirmed our diagnosis of cystitis, gave her a painkiller shot and an antibiotic shot and some stuff for us to collect a urine sample and antibiotic tablets. Then we had the joy of a crying cat all the way home, good job we love her!

After collecting the ‘sample’ we went out and did a 40 minutes walk at the reservoir which is fairly flat, by then I was pretty much finished for the day and lazed about. We’d been hoping to visit Dad but had to put it off until Monday.

Saturday
Feeling loads better, we went out to do a Costco shop and then had a book buying session at Waterstones and lunch there too. Was very good fun but about all I could manage so I pretty much flaked out for the rest of the day. Pushkin (sometimes know as Mrs Whiskers) our cat isn’t well and I spent lots of the day phoning around various vets to see if we needed to take her in as an emergency, the night time backup vet told this wasn’t needed and would cost £90 for visit plus any treatment so we are going to our own vet tomorrow morning.

At the moment Phil is reading me ‘The Phoenix and the Carpet’ it’s by E Nesbit and is the sequel to Five Children and It. If anything I’d say it was even better then the first book and I loved that.

Friday 1st February 2008

I’m actually posting this on Tuesday night having had chemo today and being up with my ‘steroid insomnia’; if tomorrow isn’t too bad I’ll try to catch up to date with the blog but in the meantime I’ll post this.

Friday
Feeling much better today and the weather had improved enough that we could do a short walk in the woods.

I’m not sure if I should be pissed off that it all happened just one day too late or pleased that our decision had borne fruit as I strongly suspect that resting up yesterday made the difference and that if I’d insisted on going out last night I’d be feeling really grotty today. Think I’ll go with the positive approach, shame I missed the fun but I’m getting my reward today!

Thursday
Bugger! Bugger! Bugger!

Foul weather all day and still not feeling very well. We did go over to see Dad for a very brief visit but even that knackered me. I had an afternoon nap and was still hoping that the weather and my condition would improve enough to go but in my heart of hearts I knew it was a forlorn hope and that travelling into London for an evening event would be monumentally stupid.

Trying very hard not to sulk because it’s nobody’s fault and being miserable isn’t going to improve the situation by one iota!

Wednesday
Feeling a bit better today, maybe the antibiotics are starting to work. We have an invitation to a select celebration at Madame Tussauds on Thursday night and I’m really keeping my fingers crossed that I’ll be well enough to go. It’s to celebrate the 10^th anniversary of China Holidays who are one of Phil’s clients and they’ve been great about keeping a place open for us even though they were over-subscribed.

My Dad was fascinated by China and taught himself to read and write in the language so that he could translate their poetry and he passed the fascination on to me (shame I didn’t get the brains and language skills too).

Anyway to cut a long story short Phil was out working and I finally pulled my finger out and went to the hairdressers so I’ll look good tomorrow. They are called ‘Do Yer Nut’ and are just across the road so I have no excuse for not going more often; they know about my medical situation and Sandra who owns the shop is great about managing to fit me in with little or no notice when I have a ‘good’ day. I had my hair cut and coloured and feel so much better; I never realised that I was so vain but I’m glad I’ve kept my hair, I’m lucky that with the drug combo I’m on people usually don’t lose it so fingers crossed.

Tuesday
More visitors today, Bill and Aletia dropped in to see us during their ‘Grand Tour of the South’ bringing the 3 children; Pandora the middle one is our un-goddaughter (humanist rather than religious ceremony). I never thought I’d have a godchild as I’m not christened and the church therefore takes a dim view of me which I must admit is completely reciprocated. I’m not usually a children person (ask anyone who knows me!) but these 3 are really nice kids very well brought up and a therefore a joy to be with. It probably helped that we had lots of toys left over from our Christmas stockings and also that Ariane, Pandora and I all share a great love of dragons so we looked through one of my dragon books together which was good fun.

Phil who is my own personal dragon since my illness told them when I was starting to feel tired (I was still feeling pretty ill and had had a very bad night) and they went off quite happily to the next stop on their tour.

Saturday 26^th to Monday 30^th Jan
Still really on grotty on Sat and diarrhoea very bad so I tried the alternate medicine I’ve been given (Codeine Phosphate) you take this 4 times a day but after 1 I felt so ill I had to go back to bed, we thought this might be because I’d already taken the other remedy and also had a hot shower. Therefore on Sunday I took only the Codeine as directed and still felt pretty bad we did manage a longish walk at the reservoir but that we about it. Monday Anne and Arthur went home, it was lovely to see them but I did feel guilty that they had been left on their own so much. It couldn’t be helped; Phil has to do his work and I just had really bad side effects this time, the only consolation is that at least I know the treatment is working and that makes it all worthwhile.

Friday 25th January 2008

Hi Everyone - Sorry for the delay in posting but as well as having visitors it's been a physically tough ride the last week or so. I'm feeling better now and I'll be writing up my weblog until we've caught up to date over the next couple of days.

Friday

Feeling pretty grotty but that’s not unusual for this time in the cycle so nothing to worry about. We did manage a short walk in the local woods but that was about all I could manage in the day

Thursday
Not the best of days, we did manage another short walk but I was very tired and feeling fairly bad today. All the normal side effects plus this strange new one where the palms of my hands go really pink and painful especially at the fingertips; I knew it was a possible side effect but hadn’t had it yet.

Nice to have Anne and Arthur around and they’ve been great about understanding that I need to go off and nap often and that Phil has to spend time up in his office working. So many people seem to think that working at home means being on holiday and seem to think Phil can just drop all his work and spend his time with visitors, it’s one of the common problems that home workers have!

The district nurse came over at 3ish and then supervised while Phil did my pump disconnect and flushed the PICC lines; he did great as usual and we agreed with her that he’d do it all from now on but we could call in help if we needed it.

Wednesday
I didn’t sleep very well on Tuesday night but that always the case on chemo night. I’m always a strange mixture of tired to the point of exhaustion while being totally hyper from the steroids they give me at the hospital, this time there was the added high of the news I’ve just got.

Anyway today I had the usual side effects; tingly fingers when they touch anything cold, jaws spasms when I start to chew etc, nothing too bad on the first couple of days the only new and interesting one was that my tongue suddenly seems to have got extra sensitive to mint which I discovered when I tried to clean my teeth. I’ve also discovered the bruises from my fall on Tuesday evening; this was caused by another new and interesting side effect; as I was getting out of the car at home I couldn’t feel my feet for a few moments and therefore fell into a bush. I was so well wrapped up that it didn’t hurt at all at the time and now I just have a few bruises so no real harm done.

Anyway didn’t do much today but sat around and chatted with Anne and Arthur although we did manage a brief 15 minute walk on the easy path in the woods.

Tuesday 22th January 2008

Tuesday (chemo dilemmas and some positive news at last)
I may not post much for the next week as Anne is here and I’m often a bit physically low after the chemo so don’t worry if there is a bit of a lag! Anyway it’s starting to be a routine that I post late on the chemo night as the steroid injection means I don’t sleep very well so here I am at 2.30pm.

Well the diarrhoea continued all night and into the morning although it was tailing off a little. At the Marsden I arranged to speak to Gill the clinical trial nurse to check about this, also my blood pressure was up above the clinical trial level so that was another question mark. After an hours break the BP had slipped down to just below the critical level so it was just the diarrhoea to worry about. We when to se e Alex the doctor, at first he was keen to delay but as my temp was okay and my tummy had started to settle down a lot he agreed to let me go ahead (the concern was that it would be dangerous to have chemo if it was and bug that was causing the problem). I felt we were all vindicated because the 10am bout was the end of it and I’ve been fine every since.

However I’ve kept the best news for last; amazingly Alex had the results form my CT scan already and also results for all of my tumour marker (CEA) blood tests, the lesions in my liver have visibly shrunk (the one was used as an example and was probably the best but it had shrunk by about 20%!), as backup to this my CEA markers have dropped from my first appointment to now by about 70% (over 50% indication a high probability that the tumour is responding well).

It’s early days and baby steps so I’m trying hard to keep my feet on the ground and not let myself get carried away as in the past this has lead to huge disappointment; but it’s a better result that I dared to hope for at this early stage and Alex did quote it to me as ‘good news’ and ‘steps in the right direction’.

So I think is little celebration is in order so you should all go out and either have a drink, a cream cake or whatever your own favourite indulgence is and blame it on me!

Monday
Slept a bit better last night but still not all that well so I let Phil lie in for a bit while I did a few bits to get ready to go off to the Marsden. Packing was tricky because it’s a bit up in the air what we are doing; I have my CT scan today and also the blood tests and then I should find out if they are okay for me to have chemo tomorrow. (I’ve been taking this very, very expensive honey for the last week which is supposed to help with keeping the white blood cell count up during chemo so fingers crossed).

My sister Anne is coming down with her husband for a visit and is arriving tomorrow; we had arranged this before I missed the last chemo session so it was going to me my ‘good’ week but now we’ll be away so I sent her a key. This means that if my blood is okay we will go over to my friend Gaynor (the good cook one) and stay overnight; if chemo is delayed again we will have dinner with her then drive home so I can be there to welcome Anne and Arthur.

We had to wait ages for the results of the blood tests but the answer was yes! they are fine for chemo tomorrow. Before that I had my CT scan, as I’m allergic to iodine I had to drink nearly a litre of this horrible white gloop for the contrast medium. Just as we got to Gayes house I started with the most vicious diarrhoea which essentially lasted all evening. The food was yummy as always and my appitite wasn’t affected so I don’t think it’s a bug but I suspect the white gloop is that culprit. We’ll have to wait and see if this means I can’t have chemo after all; I’ll be very hacked off if that’s the case!

Sunday
We didn’t sleep very well last night as Phil was so feverish and restless and he was really sick today so we didn’t go out at all (I did pop out to get us a takeaway from the Indian shop across the road as we hadn’t got anything for dinner)

On Sam’s advice I cut the tomatoes in half and slow roasted them for hours in the oven, we ended up with something that looked like a juicy version of sun dried tomatoes, Sam would have put them in jars with olive oil but as I don’t have jars I’m going to freeze them for later use. We still have several pounds of fresh ones left and unsurprisingly we had cheese and ‘tomato’ sandwiches for lunch.

Saturday
Feeling better again today but the irony is that Phil now had rotten cold, we are hoping that he caught it off me which would mean that I don’t get it again! We did go out to the shops and the library but it would have been too wet and miserable for a walk even if Phil had been well.

Sam came over for a quick visit, we had been supposed to be going to her but as Phil was ill she did the drive, she’s a very good friend, she stopped off at the Farm Shop and bought me a whole box of tomatoes for £2. I used about 1lb or more in tonight’s supper (a lovely quick fish dish that my friend Gaynor showed me and I’ll have to see what I can do with the rest of them tomorrow.