Sorry - Been busy

Hi Everyone, I'm fine.
We've been away for a few days and now we have a house guest so I've been a bit busy but I'll be updating the weblog in the next couple of days. See you soon.
Jill

Tuesday 19th February 2008

Tuesday
Marsden today, It was very foggy so we left even earlier than usual, there were some hold-ups on our side of the Dartford tunnel but not as bad as wee were expecting and fairly clear on the Sutton side so we got there early (I think it may be cos some of the schools are on half term) My bloods and everything were fine (I think the honey may be helping as the white blood cells were back up into normal range but of course it may be because of the reduced dose) Anyway as my side effects were better this time Dr Alex went for the reduced dose again; I checked as I’d been a bit confused and he had only reduced the 2 standard chemo drugs by about 20%’ the trail drug I’m still taking at full strength.

The chemo drugs were late arriving so I didn’t finish until late and we left at 6.20pm but the traffic was great and we got home at a very reasonable time. WE had what is becoming our standard chemo day supper of Quorn Shepherds pie with peas and sweet corn; quick, tasty and easy to eat… fantastic!

As usual the steroids have kicked in and I woke up at 4am which is why this is being posted at such an odd time.

Monday
Phil had to take the car off to St Albans for an MOT so I got him to drop me at the station and jumped a train to visit Dad. We played cards had lunch then I had a nap (slept badly last night for some reason). Phil came and picked my up at 2 is and we went home, I did do a bit more work of Phil’s neck which is still sore but at least the stuff I did yesterday meant he could drive safely earlier in the day.

Rest of the day was doing house stuff and getting ready for the hospital tomorrow.

Sunday
Our friend Sam had told me about a new Farmers market she found near her place (about 20 mines from us), I’m finding I can’t make our local Farmers market as it’s early Saturday morning every fortnight on my bad weekend and I don’t feel up to the trip at that time. The local one at Barleylands is very good but the one she found at Thames Chase seemed to have a good selection of stalls listed in the site and was also a good place to walk so we could kill three birds with one stone (buy good stuff, see Sam, have new walk).

Well life doesn’t always work out the way you intended does it? We got there first cos Sam was running late and then got lost. It was £1 to park in a car park that was far too small for the number of visitors who go to a Farmers Market but in the end we found a place. We went in and started to look for the market; we found it then carried on looking cos there HAD to be another section. It was tiny; maybe 9 or 10 stalls, these were strange to say the least, The 1 veg stall had cabbages, just cabbages, rows and rows of cabbages, nothing else but cabbages, it would have been a wet dream for and self respecting cabbage fetishist but didn’t do much for me!, Then there was this cheese stall, it had pre-packaged local cheese. That is just one type of pre-packaged local cheese, one strength, one make, rows and rows of identically sized identically labeled local cheese.

To be fair to the Market there was another cheese stall which had a good selection of various cheeses open and fresh looking. Well…. If I’m honest we only saw them from a distance because this was about the only stall which looked any good so it was surrounded by about 90% of the visitors.

Anyway I called Sam and told her not to bother, there had been a celiac stall listed which was her main interest but it wasn’t there, Later I looked at the site again and the list was of stalls that (usually were there) maybe it’s better sometimes but there didn’t seem to be space for more stalls so who knows.

We’d got the quite early (it started at 10am which was quite civilised for a Farmers Market) so we arranged to meet up with Sam at another place nearer our house. The we attempted to leave; there were number of other visitors also attempting to leave (most of them were grumbling about paying £1 for parking when the market was such a waste of time)

Now I may be unfair here but I don’t think that Thames Chase have thought out the whole Farmers Markets concept. There is plenty of space for walking and they are working really hard to reforest the site but it’s quite new and raw looking and very open so not our favoured type of site for .walking. They obviously don’t have hoards of visitors normally so the entrance road is one way with a number of passing places. When we left the were a few other people also leaving but (and this is a big but) loads and loads of people arriving, there parking place s were all full now so they couldn’t park so there was a queue of cars lined up down the one way road in. You are already seeing the problem aren’t you? We did eventually manage to bull our way out but it wasn’t easy, I felt sorry for the arrives who probably thought the Farmers Market was going to be great cos they had to queue for so long to get in, oops……..

Saw Sam for coffee and cakes, the revised plan had been for her to come on to our place but Phil was looking quite unwell by this time, the headache from yesterday had gone and he had a truly horrible shoulder and neck pain which was making it difficult for him to turn his head to the left (this is apparently a big problem if you drive) so we all shot off to our own homes. The good part of the exercise was seeing Sam and particularly that she’s so much happier and brighter now.

After I had a nap I spent a good while working on Phil’s back, shoulders and neck which did seem to help a bit and which I really enjoyed, it’s so good to be doing a bit of therapy again.

Saturday
We both had headaches today so I can’t blame it on the chemo; I think it was the cold from yesterday which made us tense our back and neck muscles, my guess is that these were fairly tense from the stress of the situation anyway and the cold winds at Tilbury were the last straw.

We did go out for a 20 minute walk in the woods, we wrapped up well and the tress gave some shelter from the winds so it wasn’t as cold as yesterday. We also came across the great bonus of a fire were they were burning some of the logs they had cut down. The guys left the fire burning so we sneaked out to it and warmed ourselves at it was fantastic as we both love bonfires. It was actually too hot to stay close too long and we had just started to move away when we saw the men coming back from lunch so the timing was superb.

After the walk I felt a bit better from the headache and Phil had taken painkillers which had also kicked in so we rushed off to the supermarket for a big shop while the going was good and bought food for the next few days. That just about finished me off for the day so it was back to the house for painkillers and nap.

Friday
Phil and I decided to take the day off and go somewhere nice for the day (in the end I got up late so Phil did a bit of work in the morning and we only took the afternoon off.

In preparation for our outing I’d trawled through the English Heritage book. (We became members a year or two ago and it’s well worth it if you like castles and stuff like that. You only have to visit a few places to make it cost effective but the thing I like best is that you can pop in to see somewhere for a very short visit and don’t feel like you’ve wasted loads of money on the entrance fee). I found the Tilbury Fort which had the added advantage that if it was cold or wet we could go on to Lakeside, and visit places like Lush and Borders (Jill rubs her hands in glee)

This was a good move in the end cos it was a great place to visit but absolutely bloody freezing (I even got tingling fingers through thick gloves which just doesn’t happen this late in the cycle). We had a lurk in the small museum which was heated and literally dashed around for a quick look then decamped to Borders for a shop and lunch session. I was tired and didn’t feel like moving on to Lush so Phil took me home for a nap with our stash of books and magazines.

Thursday 14th February 2008

Thursday
I had another good day today! I’m getting to like this

Phil was working down at Worthing so he had to leave early, I needed to take the cat to the vets for an injection (this is in case we need to leave her at a cattery sometime). I was finished at the vets quite quickly and then I went out on my own! I took th e train to go and see Dad for a few hours.

Admittedly I did take taxis at both end of the train journey and I made sure I missed the rush hour so there weren’t too many people to pass on horrid infections but it did feel good managing to do something on my own like that. It’s hard to explain but it made me feel like a normal person instead of a sick person.

Anyway Dad was pleased to see me, we didn’t do much; just had lunch and played some cards, we both had naps and chatted but he just enjoyed having the company I think.

I was a bit tired when I got home but not out as tired as poor old Phil who had horrible traffic jams in both directions so was shattered by the time he finally got home. Luckily we had anticipated this and had easy ready means for dinner so he could just relax while I got to food ready.

We don’t do valentines day but both remembered late in the evening and said happy valentines day and then we laughed cos we have never done the cards/presents/meal type of thing and we don’t intend to start now.

Wednesday 13th February 2008

Wednesday
We knew that the weather today was going to be great for the time of year but couldn’t believe just how warm it was. Instead of our usual walk we went to Wat Tyler Park stopping at the supermarket on the way to do grocery shopping but also to buy picnic provisions.

Once we got to the park (which was absolutely full of kids as it’s half term) we headed for our favoured spot which is this block of concrete overlooking a wrecked ship and some mud flats. It’s a bit out of the way so we don’t tend to get disturbed there, dry and a sun trap so ideal for a picnic on a warm winter day. We spread out our blankets and had a lovely scratch lunch of sandwiches, sushi, hot cross buns and orange juice.

Anyway the sun was warm and we lay down on the blankets for a bit of a nap in the sun (lovely at any time of the year but sheer joy for a February day). Anyway we were well into our nap when I heard this voice saying “hello” I looked up and this chap said “we had reports that you weren’t moving so I came out to check that you were okay” . I think they though we might be dead or something! Anyway once he had checked that we were just napping and fine he buggered off and left us, I suppose it’s a good thing that somebody was concerned enough to report it but it did feel weird.

I was surprisingly tired despite the sunshine nap so didn’t do much for the rest of the day and we had an early night cos Phil has to drive to Worthing for work tomorrow.

Tuesday
Not bad physically today we went for a 20 minute walk in Norsey woods as the day was really nice we even managed to sit on an bench and enjoy the sun for a little while which improved my mood no end. I had some bad news about a family member today which I’m sure will be resolvable but still worrying (sorry to sound so circular but I haven’t asked her if it’s okay to mention her in the weblog).

Anyway I was feeling a bit more active (I don’t think the increase in thyroxine will have any effect for a few weeks but just knowing why you feel so fatigued is helpful in itself), so I finally buckled down and cleaned the kitchen floor which was rather grubby it’s amazing how much better you feel after doing something physical and useful!

Anyway after the shock of doing housework I had a nap and woke up feeling better. Phil has had a bad back for ages now and it drives me mad knowing I could make it feel better if only I had the energy to give him some treatment so I got him on my couch and did a short but hopefully effective back massage; it was interesting if frustrating trying to work around the fact that I have the PICC line in my left arm which restricts the moves I can do with that arm. I certainly couldn’t do a full massage but using techniques which use body weight instead of strength I did manage about 20 minutes; we’ll see if it helps.

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.