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

Hi Fay

You mustn't be embarrassed by using a frame to get around. If I needed to use a chair or buggy, I would, rather than feel trapped and unable to go out. You have to remember its probably the Sutent causing the difficulties so hopefully during or just after your break you will fell better.

Well come on everyone , today's another day and it looks as if the weather is going to be quite good. Yesterday was another fabulous day. A wander around a garden centre and then a fine lunch cooked by mum with the help of "George foreman" what a fantastic piece of kit these grills are, must get one today. Later in the day myself and Linda went to another more local garden centre to look at some fence panels before coming home and settling down for the evening. Kate had a better day at school as the one before was not so good. The problem is she has such a lot of worry and anger built up and the other kids at her school find that difficult to deal with.

I hope all of you have a brilliant day.

Hi Bob and Andy,
Thanks for your words of encouragement i'm sure i'll get use to the idea off my walking frame,
I also have a walking stick , crutches sound ok though Andy, i think deep down it makes me feel like this disease is taking over my life when i have to use aids as i feel perfectly ok and well untill i walk a short distance then i'm reminded of what i've got, but i agree with you Andy if i want to get about i'll have to get use to them. I have this weakness all the time Bob even when i'm on my good weeks, Doc says the only solution is to drop to 3 tablets but i dont want to as i want to get the best results.
I'm sorry to hear about Kate Bob, but i'm sure she will be fine, i agree with Andy kids are really resilient especially at her age. My daughter Joanne is 35 and worries herself sick about me as being a adult she understands more about the disease and what the consequenses can be, BUUUUUUT enough of that its been another wonderful sunny day , well it has here in manchester anyway so i hope its been the same where you are, i've been wondering if the sun effects us differently on these tablets, as in will we burn more? I nearly had a bit of a distaster today, my hair, eyebrows and eyelashes have gone from blonde to white, do any of you have have this problem? anyway i decieded to put a blonde colour on my hair, BAD mistake the tablets must make it very porous also cos it went orange ugg, so i quickly washed it out so its not too bad.Well thats all for today, take good care of youselves, Fay.

Hi Andy and Fay

Hope your day has gone well, mine has been OK but too tired to do much. Fay, yes my eyebrows have turned grey and any new growth stubble is also grey but my hair remains brown. I don't know if the sun affects the way these tablets work but I will sit out and enjoy it anyway. My doctor advised me to cover or else the scar on my chest will be more visible. I told her that was the last thing I was worried about. We spent this morning looking at new cars and bought and tried out a George foreman grill (or a george formby grill as Linda keeps calling it). It works really well and I rustled up a couple of steaks with salad in no time (yummy yum yum)

I hope everyone has had a good day.

Hi,

my beard went white whilst on the sutent but nothing else, it was quite strange to have white stubble and brown/grey hair, different. But since I have had the enforced lay off from the sutent the beard has returned to its previous mixed colours. My doc thought I was silly and that it was old age - sod - but that proves it, its the drug!!

So don't worry about it.

What sort of cars are you looking at Bob, I love car shopping and test driving and all that stuff - let me loose at it - lol;

Have a good one evryone.

Andrew

Hi Bob and Andy Here i am back again cos there is nothing on the tele worth watching, its better in the daytime than at night. So you have both got distinguishing grey bits eh, i wonder if i'll get my colour back if i come off the tablets.
I have just read your profile Andy and your condition seemed to have started just like mine, mine primary tumour in my right kidney was 11cm which i think is about the size of a kidney.I totally agree with all your sentiment about hospitals and i also find me trying to chear other up, its just the looks you get and i think people exspect you to look ill, i dont for some reason, my GP recently retired and when i met my new GP that was the first thing she said you dont look as though you have a bad illness. I noticed Andy that you live in the north so i wondered if it was the northwest if so you may go to Christies Hospital? Did any of you have Interlukin 2 ? that was a nightmare.Well thtas passed another 30mins as i can only type with two fingers.
Glad your enjoying your george formby Bob, they are very good, and your steak sounded lovely.
Right ill say night night now, Take care of youselves, Fay.
PS If your wondering where the Sweetiepie came from it a pet name i have for my dog Mia,

Hiya and good morning. Well today Ive been awake since 04.30. Yesterday I felt really tired again but I probably overcooked it in the garden a couple of days ago. I also ache a bit all over which is probably due to using muscles I'd forgotten I have. Never mind I'm sure it will not stop me doing the same again. Well Andy as my car is at present a company car I am getting heavily taxed on it, plus also I need an automatic because where I had my chest surgery. I find it uncomfortable to change gear. We are looking at leasing a car through the mobility scheme. I fancy another Mondeo, but an automatic and an estate. I will keep you informed. Linda would like a sporty job but she would need a hoist to lift me up from the seat as they are so low.
Fay, I can relate to people saying how well you look. When I was first diagnosed and even after I had my major chest surgery people would say to me how well I looked and that the picture doesnt tell a story. Its only since being on the Sutent that my appearance has changed.(some would say for the better), Like you I also stuggle with walking any sort of distance and stairs can make me feel physically sick. I know that the sutent can cause this and even on your off weeks the Sutent is still in your body. In my case I have nodules in my lungs and they were, at the last scan, still partally collapsed so that is probably my problem.

Does anyone know anything about the drugs Clexane and Fragmin. apparently I have to have this cocktail before and after flying and am interested to see if anyone else has had these.
Mollie my dog is lying patiently by my side expecting to go outside and Linda will be lying in bed expecting a cup of tea so I suppose I'd better get moving

Have a good day

Many thanks for all of you who have sponsored kate in her "race for life" http://www.raceforlifesponsorme.org/katejacubiak My sister Julie has just got Kate a tee shirt with our favourite picture printed on the front. If you log into the above link you can see the picture along with Kates current total. Also some of her friends are doing the race with her which is so great and so touching.

Hi Bob,
When i was first diagnosed with cancer they also found a pulmonary embolism and a blood clot near my heart so i was kept in hospital for a week and put on Warrferin (blood thinner ) but when i went to Christies they put me on Clexane injections because it more compatable with cancer treatment. I had to inject it into my tummy every day. Then i had the Heamatoma so they stopped the blood thinning treatment altogether and my consultant said its the better of the two evils , as staying on it and risking another Heamatoma or off it and hoping my blood clots dont move, so he decieded on the former.Its for that reason i cant fly any more, but ive found it quite interesting you have to have it to fly they dident suggest thta to me. Do you have blood clots or is it for another reason. I know blood clotting go hand in hand with kidney cancer.
I hope this is of some help, Regards Fay.