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.

Tuesday 15th January 2008

Friday
I felt much better today, I’ve started to take some pills they gave me for acid indigestion and that seems to be helping and the coughing has more of less stopped. I am getting very antsy because the weather has been so bad that we haven’t been out for a walk for days but there really isn’t anything we can do about that.

Phil went over to pick up his Dad for a visit, I haven’t seen Dad for over a week because I haven’t been well so I was looking forward to it and so was he. While I waited I called my fried Meril and we had a good chat, she’s been ill (not the same thing as me) for several years now and she’s been a great support as she understands some of the stupid issues that you only recognise if you’ve been in a situation. I really and very lucky to have such a robust support system of family and friends and so many wonderful people around me; I must have done something good in a previous life!

Dad and I chatted and played cards (his favourite pastime) while Phil worked upstairs then Dad had a nap and decided it was time to go home so Phil took him. Phil wasn’t feeling very well (he’s coming down with the cold I had) so we decided not to go out shopping but to get a takeaway. We are lucky (sort of) in that there is an excellent Chinese and an equally good Indian just across the road from us so Phil consented to let me go out and fetch it (I was desperate to get out of the house by this time even if it was only for a couple of minutes).

Thursday
Phil went off to see his accountant (Arthur is a great guy and I was sorry I wasn’t feeling up to the journey so I could say hello to him and Margaret). Margaret sent me some homemade seville marmalade which is delicious (she labelled it as a taste of summer which is lovely).

While Phil was out I called my friend Pam and we had a long chat; she’s ill too at the moment and we had a moan to each other which does sometimes make you feel better.

I did some stuff on the computer until Phil got back and then my friend Julie came over for a visit, she’d just been for an interview so keep your fingers crossed for her. We just sat and chatted for a couple of hours; I love Phil dearly but I’m used to going out to work and meeting loads of people so sometimes it’s good just to see a different face. Julie is really nice, she’s very sensitive and she noticed as soon as I started to get tired and offered to go off home; this was great because I’m not so good at telling people to bugger off cos I’m tired, Phil is great at it but he was upstairs working.

Wednesday
The district nurse came but it was Phil who actually flushed my PICC lines and changed the dressing; the district nurse was very impressed with him. I do trust the nurses and I know they are well trained but it is so comforting to know that Phil is learning how to do it and soon he’ll be confident enough to do it without having the nurses supervise. It will give us much more flexibility but there is also the fact that I trust Phil completely so I feel very safe when it’s him doing it; I’m so lucky to have him!

After the nurse left we went out for a half hour walk in the local woods, it was still very damp and muddy underfoot but much less than Hylands and we have our “stout boots” which have become a sort of in joke for us.

We also managed a trip to the supermarket and I bought some cough medicine because the cough is getting really bothersome, it starts up if I go into a change of temperature and if I’m tired. I’ve been getting a lot of acid indigestion too and together they have nearly made me be sick a couple of times so I hope the cough mixture works.

Tuesday 15th January 2008

Tuesday
Phil was supposed to drive down to see his accountant this morning but we had both slept very badly and I was feeling quite coldy so he postponed it for a couple of days, the rain was torrential so I was really glad that he wasn’t going as it’s a long drive.

There was no way we could manage any sort of walk as it was so cold miserable and wet all day, we had been going to visit a friend in the evening but she kindly let us off the hook as the weather was still so bad and the roads crammed with traffic.

We did pop out to the local supermarket to get food but even that short trip well wrapped up made me cough so much people in the shop looked at me like I was some sort of Typhoid Mary.

Monday
Still had a bit of an upset tummy and cold symptoms but feeling a bit better today so we decided to push the boat out and drive over to Hylands Park for a longer walk and some different views. It was a good job we had our stout boots on! The day was cold and clear but the ground at Hylands was sodden and very slippery the mud was so deep and slippy that it was as difficult as walking on soft sand but with the added bonus that you thought you were going to land on your bum at any moment.

We managed about 45 minutes before we called it a day, it was very tiring and probably good exercise but not very enjoyable at all; we agreed that we will leave Hylands Park until the weather is a bit drier! I had to put my trousers in the wash even though I hadn’t fallen over they were splashed with thick mud all up the calves.

Sunday
Still felt a bit grotty but better than Saturday. We managed a half hour walk at the reservoir which is beautiful. Blood pressure down a little which is a relief

Saturday
I’d half arranged to go out to the Farmers Market with Phil and Julie but felt pretty awful when I woke up at 7 and then 8 for my tablets so I texted her and cancelled. It wasn’t a great surprise that I felt bad as we are starting to get a feel for the pattern and days 4 and 5 after the chemo seem to be the bad days.

We did manage to go out for a short walk in the afternoon which helped a bit but mostly I just lay about on the couch napping and feeling sorry for myself. The tablets I got from the doctor helped with the diarrhea but I still had an upset stomach all day and my blood pressure was up again (it was high on day 3 of the last cycle too so I won’t be worried unless it stays high for a couple of days)

Friday 11th January 2008

Friday
It was wet today but not so cold so we went out for a quick walk on the easy path in the local woods. This is useful as it’s a disabled path it’s quite flat and well gravelled so that it doesn’t get too muddy even when there has been a lot of rain. One circuit takes about 15 minutes and it’s roughly one kilometre so it’s just enough to stop me crawling the walls which I have a tendency to do it I can’t get out of the house.

I wrapped up well but didn’t have any of the problems I sometimes get with breathing in cold air after my chemo so that was great.

There was some mix up so the district nurse didn’t turn up to disconnect my pump this afternoon, we phoned up and they arranged for somebody to come out in the evening. The two nurses arrived and they were great, we wanted Phil to try to do the disconnection and line flush and he was fantastic, they were very patient and encouraging and he even managed to flush the line that had been blacked a couple of days ago. I’m so lucky to have him!

Tonight Phil is starting to read me ‘The Weirdstone of Brisingamen’ by Alan Garner.

Also just for my niece Helen who phoned up tonight I had homemade soup for dinner (she says I always seem to be eating soup when she reads my weblog).

Thursday
Felt pretty good today especially considering that I didn’t sleep very well. My friend Julie came over and spent the afternoon with me which provided a good excuse to send Phil out to but cream cakes. We chatted and watched Neverwhere on DVD I had a great time and I hope that she did too!

Phil finished reading the Children of Green Knowe (very interesting book) in bed and then we both slept like logs till 10.30.

Wednesday 9th January 2008

Wednesday
Up at 6am to get ready for the drive to Sutton, we tend to sleep badly before a chemo trip and Tuesday night was no exception, I think it’s a combination of stress and the knowledge that we have to be up and out by 7am.

Drive in was bad to average just over 2 hours so I was only a couple of minutes late for 9am, Phil dropped my off at the hospital then drove on to Sutton Library to set up and work for the day; it’s cheaper to park at the library then the hospital; the internet access is better and it’s more comfortably set up for working.

After a worrying wait for blood tests I found out at noon that I was good to go and the chemo started at about 1.30, I texted Phil as soon as I had the good news and he was just as relieved as I was.

Finished at around 5.30 (well I say finished; but what I mean is connected up to my 48 hour pump and therefore released into the community). Phil picked me up just before 6 as arranged and for some bizarre reason the trip home was completely clear and we did it in just over an hour; fantastic!

Supper then bed, however I never sleep well on the first night so I’m up now at 5.30 am and writing this to you. I feel fine, just nor sleepy (might be the steroids they give me at the hospital) so I thought I’d get up and do something useful. I’ll probably anp a good bit over the next few days so I’ll catch up on sleep one way or another

Tuesday
We both slept very well and got up late, Phil worked all morning and some of the afternoon. Did a bit of shopping and then popped into Dads with some stuff we had picked up for him.

Had supper; then an early night as we had to get up early on Wednesday for the Marsden trip. Fingers crossed that my counts are okay this time.

Monday
I was still feeling a bit coldish but much better I was still feeling a bit coldish but much better and we both slept very well. I phoned Gulshan at TNS and some other people in the morning while Phil worked and the in the afternoon we went back to Hyland Park.

This time we visited the house itself, it was £3.40 to get in and was worth it the once but we aren’t all that turned on by stately homes so we probably won’t visit the house itself again. The tea room in the stable block is another matter (they sell Rossi’s ice cream and I had some! As well as coffee for warmth) The ice cream was more of a treat than normal because I adore Rossi’s and also because I can’t eat or touch anything cold for several days after a chemo session so my ice cream intake has been severely restricted recently; for some reason I don’t tend to fancy coffee as much as normal either so the whole experience was stellar!

After our break we started to go for a walk in the grounds but were rained off quite quickly so we went home and snuggled up in front of the fire.

Sunday
Our friend Sam had bought us a tin of Pink Grapefruit Tea from Whittard for a stocking filler and we both loved it so much we had pretty much used it up by today; Phil had been saying he didn’t fancy any and I knew that was so there would be more left for me so I was quite keen to get some more.

I found a shop in Chelmsford so we did a ram raid style dash into Chelmsford to go buy some. Phil was still concerned about my low blood cell count so I wore gloves as not make sure I didn’t pick up any bugs and we just did Whittards and of course a quick look at the bookshop! We bought 6 tins; 3 Pink Grapefruit, 1 Malibu and Pineapple, 1 Lime and Lemon and 1 Blackcurrent and Elderflower. My fav is still the grapefruit but Phil loves the pineapple!

When I was searching for the shop I also checked out parks near Chelsmsford so that we wouldn’t miss our walk o we went on to Hylands House. There was a guided walk setting out from the Park but we missed it so just had a ramble around some of the grounds; it’s huge and we will definitely be back with Phil’s camera!

Out friend Tabbi come over to visit later in the afternoon, we haven’t seen her for a while but with some friends it doesn’t seem to make any difference and we had great fun.

Saturday
We did some housework in the morning then Phil picked up Dad and brought him over for a visit; he stayed till 6ish then Phil took him home. We did manage a bit of a walk in the local woods while Dad had a nap, Dad says he didn’t sleep but he was flaked out when we got home so I suspect that he actually sleeps much more than he thinks!

Friday 4th January 2008

Friday
Still coldish but feel much better today, we wrapped up well and went out for a walk in the local woods; did a couple of kilometres on the easy path and felt much better for getting out into the fresh air.

We’ve finished “Five Children and It” which was fantastic and Phil has just started reading me “The Children of Green Knowe”. This book is also very well written but has a completely different feel to it, very otherworldly and thoughtful and much slower in pace. The author treads a very fine line in that it could be a very scary ghost book but she manages to just avoid that so it is strange but not frightening.

Thursday
I don’t know if it’s psychosomatic because they told me I had low white blood cell counts but I felt really unwell today. Very much like I am coming down with a cold; with a sore nose and throat and coughing. We decided that it was probably best if I didn’t go out to the shops as I’m so vulnerable to infection at the moment, so Phil went out and stocked up in case the bad weather they have predicted sets in.

I sat around and didn’t do much but feel sorry for myself, I’m inclined to beat myself up about that sort of thing but I expect it’s something that happens to us all at times, we also had some bad news that al very close friend of ours had just lost a close relative. We spoke to her but given my health today there wasn’t much we could do to help; actually there isn’t much anyone can do at a time like that except be there if the person wants to talk.

Hopefully tomorrow will be better!

I'm fine!

Wednesday 2nd Jan

First of all I'm fine!
The fire was at the Royal Marsden in London and the one I go to is in Sutton!

As it happens I wasn't there this afternoon anyway as my blood counts were a little low so they didn't give me chemotherapy today I have to go back next week. They told me that the counts are only a little low and I'm so ridiculously healthy that they wouldn't have had any hesitation in giving me the treatment but the Clinical Trial protocol is quite strict so they had to postpone for a week.

I was a bit depressed about it then I got home and heard about the fire at the London Marsden and I realised how childish it was to let such a minor setback get to me.

Anyway, we are home safe and I get another weeks holiday from the drugs.

Tuesday 1st January 2008

Happy New Year to everyone!
Here’s hoping the 2008 is a better year for us all.

Tuesday
Slept in till 11 since we had such a late night yesterday. Didn’t do much during the day as we were both tired from the unaccustomed late night and the knowledge that we have to get up at about 6am tomorrow to go to the Marsden.

Phil has had a bad back and shoulders for quite a while and I’ve been threatening to give him some massage but we just haven’t got around to it. Today we actually set up the massage couch and I did a half hour on his back. I’ll need to do some practice but it went better than I was expecting so we’ll have to wait and see if it helps. It was interesting if a little frustrating to work around the PICC line on my left arm and will take some practice but it was great to do a little therapy work at last!

Monday
We were invited to a New Year party by our friend Sam, some other friends drove down from Oxford and stayed overnight with us so we went off to Sam’s together. There were only 6 of us in the end and a beautiful Great Dane but we had a really good time and didn’t leave till well after 2.

Sam laid on a fantastic spread and we had a great time without getting too drunk.

Sunday
Weather was cold but bright, did out shopping then had a walk in Wat Tyler Park, I really enjoyed it but had to stop after ½ an hour as I was coughing a lot because of the cold air.

Later we dropped in on Dad and made sure he was feeling better and then had a quiet evening at home.

Saturday
Had a lovely hour long walk at the reservoir, I’d given Phil a step meter for one of his stocking fillers so we could tell that it was about 3.5 kilometres that we had walked.

In the afternoon we had a bit of a scare as Dad phoned in some distress as he’d got confused about his medication. I spent some time talking to him and managed to calm him down and later the carer called to tell me he was fine.

Friday
They let Dad out of hospital today, we did some shopping for him and then went over to his house to put the heating on and made sure it was all warm and welcoming. They had told us that he was being dischared just after noon but it was after 4pm that he got home chilled to the bone so we warmed him up with some soup and made sure he was okay before we left.

Thursday
Quiet day after the festivities. We did a bit of shopping and some tidying but mostly just relaxed.