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

Hi to everyone Well BT have finally replace our cable which was nicked by some low life so I thought id better post another message quick before it gets nicked again. Now i can see a full screen again and not just a small window on my phone I can catch up on all the news. I was very sad at learning that maid marions hubby George had lost his battle with Cancer but what a fight they both put up. My thoughts and prayers are with them and I hope Marion can take some comfort from knowing how much she has helped others on this site. George and marions positivity are an inspiration to us all. I have spent some of the day helping Linda around the house.(I mean helping with jobs , not carrying Linda). I have spent some time on the phone and internet working from home for the company that employs me. The rest of the time has been spent resting as we have a dinner party tomorrow night and I would like to try and be awake for it. Its the sort of party we both like. All the guests are cooking the main components of the meal and we will provide the homely surroundings and the riveting company. We have stocked up on wines and beers which is a bit of a blow for me as Im not allowed to drink alcohol, never mind, small price to pay. I hope your weekends go as well as can be expected. If your weather is anything like ours at the moment I would light the fire and stay putt, rather than get blown away by the gusts of wind.

Well today hasn,t been one of my best. I feel really frustrated by the fact that whatever I do, I am so tired once done and then i'm no good for the rest of the day. I guess its all about knowing your limitations.Unfortunately i've never been a patient person and i'm a very impatient patient. I suppose I know im never go have the get up and go that I used to have, but it does'nt stop me trying. Ive been off my food today as well which , logically thinking, can't do much for your energy levels. I hope my appertite returns in time for our evening dinner Linda and her friends have organised.
Right thats my moans out of the way. On a positive note I am nearing the end of week 4 on sutent and all things considered I have not felt too bad at all. Yesterday I heard that my sister and young niece from America is coming to England in a months time which is really good news. I see my twin and other sister quite reguarly which is really nice and it will be good to see sally too. I hope you are all ok and will catch up again tomorrow.

Happy mothers day to my wife Linda, My mum and all you other mums out there

Another sunny day and another milestone reached, I have just completed my first 4 week session of sutent. So far the side affects have been managable, the main ones being high blood pressure, red blotches on hands feet and chest, extreme tiredness especially in the afternoons and evenings, and an ever changing skin colour(red, white and more often banana yellow. Can other Sutent users tell me how they faired within the two week break and was the second phase of treatment worse than the first for side affects? I hope you all had a good weekend. we had a dinner party on Saterday evening which went really well. Yesterday we went out for a Mothers day lunch at our local golf club. Although I didn't feel like eating I still managed to do ok and I managed to put another sizeable chunk of fat into my reserve tank. kate has gone to schooland Linda has gone to work so I am feeling a bit lost at the moment. I have hoovered and put washing on and now need a rest. Its so frustrating feelig so tired most of the time and I hope that now im off sutent for two weeks i will have more energy. how did all your weekends go? I hope your week is a good one and remember keep your chin up and remain positive,It really does help.

Hi bob , i find that anthony really settles down on his two week break. His feet are not so sore,his appitite returns and has more energy. I found that with each dose he got a new side affect, as well as old ones. It was gradual, like sickness,sore mouth with 1st round, colour changesand tiredness 2nd round, then blisters and by 4th round greyness in hair. Mind although most users seem to have same type of syptoms it will vary on the individual. Thsi 6th round has been worst, the rash on his hands have cleared up, that will be with finishing the course early, they are so clear now.
Sounds like u had a lovely mothers day with ure family. We did too.
love ros x

Hiya everyone. well I tried to sleep but I keep getting this coughing fit as soon as I lay down, so here I am on the computer again. My throat feels like it has granuals stuck in it and when I cough I get a fowl taste in my mouth. I have also noticed certain foods just don't taste the same anymore. I can only presume this is another side affect of Sutent. Today was without Sutent for the first time in 4 weeks and hopefully I will feel a tad better soon . Thanks Ros for sharing Ants Sutent side effects. I hope he still manages to lead as normal a life as possible. I have felt so tired todaly, so much so that Linda tried to ring me and I didn't hear the phone at all. I am hopeing to go into work for a while tomorrow providing someone is available to pick me up. On wednesday I am back at the Royal Brompton in London to see the surgeon who removed the tumor from the bone in my chest. I hope that he will tell me I can drive again so at least some normality will return. My daughter Kate is taking part in the run for life Cancer appeal for which I am very proud of her. She has already raised well over £100. I am now going to surf all your threads, so bye for now.

Well my vist to the Royal Brompton was bitter sweet . well actually in the order of importance it went really well. My chest xray shows things are healing really well, the only slight problem is that the bottom of both lungs are still collapsed , but they have improved from what they were. My big frustration is that I still cannot drive as it can take up to 6 months for a complete surgical recovery. They want to wait at least 3 months before I drive and then only short low risk journeys. Once home I collapsed exhausted from my train and tube trip and do not really remember much about the day.
Today I go to the dentist to hopefully have the tooth replaced which the anaesthetist accidentally knocked out and then off to lunch with mum and Julie. I have not managed work this week and have come to the conclusion I'm not quite ready for it. Hopefully by next week I'll have a bit more energy.

Morning Bob
I hope this couple of weeks respite will help you feel a little more energetic. It's not surprising how exhausted you are with both lungs operating at low capacity. You seem to be accepting that you need to rest and let your body recuperate - it's taken a hell of a bashing. With regard to driving, the last thing you want is to write yourself off if you can't concentrate properly. It must be lovely having your wife and daughter around you, carrying on with entertaining and usual things, and visits from family too. Keep your spirits up, you're doing really well. Have a good day today. Fi.

Hi Fiona
Thanks for the advice, I know your right about the driving. I'm being selfish by wanting to drive too soon and if I had an accident , it would undo all the hard work of the surgeon. Also, like you say, hopefully my energy levels will return a bit more in the next week. I hope you have a good day and thanks once again. Bob

Good morning everyone, I don't know what your weathers doing in your part of the world but its pretty poor here. Yesterday I had a good day after a rocky start. After getting my mum and Julie up at the crack of dawn to take me to my dentist appointment, I rang to check what time i had to be there only to discover it was two days ago whoops. the receptionist who was a right misery, said I would be excluded from the practice if I missed any more appointments without a good excuse. In my cutting way I asked if Cancer was a good enough excuse, That shut her up. Anyway Ive rescheduled for next Thursday so any reminders would be gratefully received. I tried to ring Julie but it was too late and she duly arrived nice and early. never mind we had a good time out at our local garden centre followed by lunch. By the time I got home, usual story, tired and ready for a kip. I have now weaned myself of all the pain relief drugs which I was put on prior and after my massive chest operation and I'm feeling pretty pleased with that. I have tried twice before but felt so uncomfortable I had to go back on them. so in general I feel good. I'm very forgetful at the moment but I put it down to tiredness and the effects of the sutent. today my wife Linda is at home so she has taken Kate to school. Later today we hope to go out to lunch somewhere nice and quiet. I really enjoy our time together and i know she is suffering so much watching me go through this. Kate my little girl has been suffering a bit with her emotions and struggles at home and at school to try and control them. Last night her tea ended up on the floor and a taddy followed but after a cuddle and encouragement she was a lot better . This morning she went to school with a smiley face which is always great to see. After school she has a school friend coming round which will be good for her (not for us I fear). Anyway I must go as I have a visitor due. thanks for listening as always bob J