BOB JK My diary of kidney cancer (to be continued)

Well Kate managed to stay round her friends which was really good, a milestone in fact as she has tried before but ended up comming home late as she could not bear to be apart from us. She has had friends round today also which will do her no end of good. My day has been a bit of a mixed bag. We went to sleep ok but I awoke in the early hours finding myself being pushed out of the bed by Linda and the dog. Not wanting to awake Linda I moved into the spare single bed and the dog promptly joined me so I was not a lot better off but never mind, al least I did get back to sleep. I awoke quite late and managed to get the mutt out for a quick walk before leaving for an appointment for work. After this I was in the office catching up on invoicing. As this nparticular client has not been invoiced since I was off work he will have one hell of a shock when he gets the post in the next couple of days. I am nearing the end of my second week off the Sutent and I feel actually quite well. Although my consultant told me that he thought my tumore had shrunk again there was no mention of ths on the report, so I think stable is the word at the moment. Although I have cut down on all my other drugs I will start to take these again at the weekend in readyness for mondays dose of Sutent. I hope the London protest went well and I am sorry I could not be there in person but I have not thought of much else today. Lets really hope it does some good.

Another good day today. I awoke early and went into work and achieved a lot in a relatively short time. since being home I have finished decorating the ensuite and im rady to start downstairs, but after a rest i think. No pain at all despite not being on any pain releif at present.

This morning I went down to Kates school as I am project managing some building works and I was talking to this "hey man", heaviliy tatooed and who must hold the record for the most body piercings to his face, hippy type man and he caught sight of the scar on my chest. "gees where did you get a scar like that? he asked. so I felt compelled to tell him my history and now on monday he is bringing me "alternative" means of medication. I think its all to do with cleansing the mind and yoga and stuff. He said he didnt beleave in medicines and doctors and I tried to tell him that I didnt feel the same but he was having none of it. So watch this space, should make interesting reading. I have had a really good day with an abundance of decorating and gardening. We had friends round for dinner tonight and we had a chinese takeaway. My body has other ideas though and now my take away has gone away, if you get my drift. never mind I enjoyed eating it.

well I awoke with good intentions but they didnt really get off the ground. Linda and I spent time putting together a photograph album for our son Tom who is twenty one on tuesday. We dug out all the embarrasing ones and also the more recent ones. its funny but when I look at myself on some of the earlier ones I almost had a job to remember it was me. I feel I have changed so much and because I have accepted this I find it difficult to relate to pictures before I was ill. Grey eyebrows, grey body hair and different colour skin is now the norm and it probably will be for the rest of my days. Tomorrow is my last day off the Sutent then I am back on for the next four weeks. I am still on the maximum dose of 50mg and on the whole I tolerate it pretty well. I was thinking today how quick the time has gone since I was diagnosed and it gave me a sharp reminder to make the most of every day as my remaining time is likely to pass just as quick.

Today I have felt pretty good and I have managed to complete some of the jobs I had been putting off for ages.I wired a new reading light in Kates bedroom, a new external light by the back door and also changed lights in the downstair loo and utility room. When I was at my fittest I would probablym had completed all the jobs in 3 hours but this time it took me 6. Linda hasnt felt so good today, im not sure wether she has a bug or wether things are just getting to her a bit. I really hope she feels better tomorrow. I love her too bits and hate seing her suffering, especially over my illness. Kate has also been a bit subdued today but a lot of her problems stem from struggling to get to sleep at night. I also find it hard to get to sleep at night and its during this time your mind runs amock. I have lost count of the amount of times I have thought of myself dead whilst laying in bed trying too sleep. I just cant help it at times. My answer is to work really hard during the day so hopefully I will drift off straight to sleep. I am finding it getting easier and it only usually happens after a bit of a down period. Thankfully I dont get too many of those. I start on sixth cycle of Sutent tomorrow, here goes, what colour next?
I hope you all had a fair weekend.

Bob Jk

Hello all, I have been following everyones posts but havent felt up to posting. My mum had results of scan two weeks ago and was told there is an overall spread of 13% in the cancer, particularly in the lymph nodes. I was not aware til then that the cancer was in the lymph nodes, there is a limit to what I can ask during consultations as my mother does not realise how ill she is, therefore I don't know what this means for prognosis. She still remains on Sutent is now on sixth cycle but as she can only tolerate 25 mg for three weeks on, three weeks off, she is not receiving the full benefit of the drug. At the moment, she is doing reasonably well, but very thin and tired, she has also passed quite a bit of blood on and off over the past weeks, which she had not done since initial diagnosis in October 2007. Does anyone know if it is becoming very advanced now that it is in lymph nodes, or what implications for same are. The future seems so uncertain. The good news is that my father remains in remission from Non Hodgkins Lymphoma and is doing really well (diagnosed in Feb, remission in June), it would be dreadful if both were really ill at the same time. I also have a very close cousin who is not well at all at present with lung cancer (not 50 yet), this is also really worrying.

Thinking of you all, and hoping everyone continues to do well, havent been able to sleep tonight and have to be up at 7.00 for work so better try and get a couple of hours! Jan

Hi Jan, Im sorry to hear about your mothers spread of Cancer and the only advice I can give for sure is to make the most of whatever time she has left. Non of us know how long we have and all we can do is maximise on that time. Its good that your father remains in remission and I really wish you all the very best. I cant believe you are now trying to cope with your cousin also. I also wish your cousin well. As we all know, age is no barrier.

Bob Jk

Well yesterday was another good day.

I managed to totally repaint downstairs loo and retile over sink. I did find it hard work and ive noticed that I have very little patience when things go wrong ( thankfully this does not happen too often ) I suppose im on a bit of a mission. Not that I think my time is up yet , but I want to get everything sorted for Linda and Kate so if tjhe worst does happen n, at least she will not have to sit in a house that needs work on it. Also the work is very good therapy for me. I have just taken my Second Sutent of the sixth cycle

Today another of my milestones has been achieved, Toms 21st birthday. I think its fair to say I am as proud as punch the way Tommy has turned out and all that remains for me to say is "HAPPY BIRTHDAY SON" love always and good luck to you and Katie for now and the future.

Kates first day back at school today after the summer holidays and everything is hectic as normal, last minute checks to her bag, All of a sudden Kate seems to have had a growthn spurt and she looks so grown up. How many more of those growth spurts I will see I dont know but I do know that I will cherish the memory of every single one of them.

I had a really goods night sleep last night and I feel really rested. It took me ages to drop off, but once I had gone, even the dog jumping on the bed in the middle of the night failed to wake me. Linda , who has been feeling a bit "out of sorts" lately also slept well and looked a lot better this morning. Yesterday went really well, It waS Toms 21st birthday and we took him and Katie out for a meal at lunch time before family visitors arrived bearing birthday wishes and gifts. This cycle of Sutent, my sixth, the side affects seem to be kicking in a bit earlier, has anyone else experienced this ?
Today im off to work again and if possible I might do an extra hour or two to see how it goes. Although Ive had a few rough days over the last couple of weeks, it hasnt stopped me doing anything that needed doing and my quality of life is still good. Thats probably the best i could hope for.