BOB JK My diary of kidney cancer (to be continued)
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Hi, My name is Bob and I live in Cambridgeshire. I am married with an 8 yr old daughter and three older step sons. Up untill the end of last year everything was tickety boo having recently moved to a new house which we love. Work was busy but enjoyable. I am Manager of an electrical companys maintenance department and my Wife, Linda was enjoying her job as a Nurse. The three boys are buying there own house nearby and all work locally. In November I went to my Doctors with a small "cyst" on my chest. After a couple of referals and many Xrays, pet scans, bone scans and CT scans I was told the news everybody dreads. My lump on the chest was a secondary cancer of which the primary was in my left Kidney. I was fast tracked to the Royal Brompton, under the expert care of Mr Laddas who informed a long and complicated operation would need to be carried out to remove the bone tumor and surrounding bone which involved two ribs,my collar bone and chest bone. I did not have time to panic, the operation was carried out the next day over 10 hrs. After nearly two weeks in the Brompton I am recovering well from this op but I have since been told that the Cancer is in both kidneys as well as small mets in both lungs. It seems at the moment further ops are out the question and i have been put on the drug Sutent. I am one week into this and so far so good. I do not know what the future holds but I have to remain positive.
hi Bob x here's a hug from a complete stranger!! (((((((HUG))))))) I don't tend to use this site much these days but always still follow your posts to check how you are getting on :-) I really do wish you and your family all the best and lot's of happiness. Keep fighting Bob, everyone here is behind you. Lots of Luv, sita x x x
Glad to hear the fight is back on. Just read about your heartburn, has the doctor prescribed you anyhting? My Dad called the Gp and told him he was on sutent and had heartburn as a side effect and they wrote him out a prescription. The medicine he uses for it is fantastic. It has amde such a huge difference to him. I was wondering if you used anyhting? Good luck with the sutent? Also, does anyone on here know of any company that will offer travel insurance? My dad wants to go away in December. I am petrified.
Thanks Sita for the hug, its nice to know there are so many people willing me on and when I get a post from someone who is following my thread, it makes me feel really humble
Nadia, hope you are ok. I am waiting for my doctor to call me as I speak to talk over a couple of issues, one of them is the heartburn and another is the coughing reflux I seemed to have developed. The coughing is probably due to tumours in my chest pressing on the windpipe and so need to see if anything could help. I am also going to speak to my oncologist to see if local radiation is an option. I dont cough all the time but its quite horrible when I do and not nice for those around me. As far as traven insurence goes im sure last year someone posted some details on this thread regarding contacts but you would have to look back to about middle of last year. When we did our cruise we got inbsurance for any new conditions that may arrise but not for the existing but we took a chance and it was fine. If Cancer is reasonably stable then, with your doctors permission, I would say go for it.
Thanks Sita for the hug, its nice to know there are so many people willing me on and when I get a post from someone who is following my thread, it makes me feel really humble
Nadia, hope you are ok. I am waiting for my doctor to call me as I speak to talk over a couple of issues, one of them is the heartburn and another is the coughing reflux I seemed to have developed. The coughing is probably due to tumours in my chest pressing on the windpipe and so need to see if anything could help. I am also going to speak to my oncologist to see if local radiation is an option. I dont cough all the time but its quite horrible when I do and not nice for those around me. As far as traven insurence goes im sure last year someone posted some details on this thread regarding contacts but you would have to look back to about middle of last year. When we did our cruise we got inbsurance for any new conditions that may arrise but not for the existing but we took a chance and it was fine. If Cancer is reasonably stable then, with your doctors permission, I would say go for it.
thanks for the reply. I will have a look at the previous posts and see what I can find. I do not think you will be able to have radiation. Well you can but the doctors have to stop the sutent whilst you are having it. But there is no harm in asking. Also, the cough should get better when the sutent kicks in. Dads has subsided for the time being. We will have a conversation with the doctors and pray for the best. Are you under the care of Proffessor Gore? We are also under his team and are seen by Dr Larkin or Pickering. They are all fantastic and if they can do the radiation then you should go for it. We have an appointment to see the Doctors soon and will ask about the holiday. The way my dads carrying on I think he is goping whatever they say.
Ive been to the doctors and he is convinced that my cough is nothing to do with cancer and has prescribed a fairly routine medicine. Ill give it a go but im not convinced but, with me, you never know. He also checked my scar as Linda was thinking it might be infected again but he also thinks that is ok. He checked my blood pressure as the Sutent always makes it go up but he is happy with it for now. So at present im onlyon Sutent and thyroid tablets which is pretty good. Ive had a fair day, doing a few jobs in my study and also Kates playroom. I managed a cod and chips tea but havn;t really eatten much else.
Thats one week on the Sutent and already I can feel the familiar side effects kicking in, My stomach cannot hold on to its contents for too long and the fatigue is beginning to kick in, Also my blood pressure is beginning to creep up a bit so we will need to keep an eye on that. Im on a bit of a race against time as I plan to do some decorating before things get too bad so I guess thats my weekends work mapped out. I slept really well which is good as that means that Linda sleeps better.This afternoon I pick up prescription for cough. Im off to work in a bit so better get ready. Hope all is well as can be with everyone
Work went well and considering I worked flipping hard I don't feel too bad at all. This morning before work was a bit difficult as we have decided to sell Lindas new car which was a hard decision but the right one. I have been told I cannot drive and being realistic probably will never drive again and with the best will in the world, Linda cannot drive two cars at once. This morning we took it to the garage and the whole experience just reinforces the situation we are in. It feels like preparing for when im gone and its a strange old feeling. At least we sold the car for a profit so that was something. Im at work again tomorrow morning and then we have a meeting with Kates new teacher in the afternoon and im sure we will be discussing my latest cancer news and making sure Kate is dealing with it at school.
I guess so many of us with older children, mine are 29&31 yrs, don't realise how traumatic it must be to explain all of this to a younger child, well done for taking Kate's feelings so much into consideration!!! Sometimes they surprise us though, in how much they take on board and deal with in such a mature way,to us they are always our kids and we feel we need to protect them from some things.
We had a good day too, tried out the new wheelchair, not sure I like it, yet another reminder that I can't do what I once took for granted, but it got me about a lot quicker and further than I could have gone without it!
We went to Virginia Waters and it was such a lovely day. We covered over 3miles with me sitting in and pushing the chair at times. Wish it had brakes on the handlebars though it got away with me on the steeper bits! I'm used to my walker which has brakes on it!
Even the dog seemed to be o.k with me sitting in a wheelchair keeping close by and off lead all the time. She has adopted a new idea since my walking got worse, she stops at every seat available in case I need to take a breather and she's never been trained to do this, wonderful how animals sense things! No wonder she makes such a good PAT dog! Where would we be without them?
Off to my club tomorrow so lots of chatting, laughter and humour to look forward to!
yes, dogs are very perceptive, My lab Mollie hasnt left my side since I was diagnosed and when we go away for a few days without her she pines for me and goes off her food. Every morning she comes into our bedroom and im always greeted with a tail wag but she looks really sad and cannot disguise it. I dread to think what she will be like when my time does come. Im glad your using that wheelchair, it took me a while to use mine when I had to but im glad I did, it got me out the house at a time when I needed it most. It does remind you of things we took for granted but we have to accept that and move on. Since being told I cannot drive anymore I struggled for a bit but now I accept it and adapt my lifestyle accordingly. Im on the lookout for a cheap taxi service after Linda goes back to work and I keep putting that off but I must deal with it. Selling Lindas car , so that we only have the one car was hard, that was the rubber stamp as far as im concerned on me not driving anymore, but it was necessary. The money we save will also pay for more weekends away.
I slept really well last night and I think im beginning to feel a bit fitter if that makes sense. My cough is a lot better and my headaches are virtually gone. Wether that is the Sutent working already , who knows. If it folows my last pattern I will soon feel really tired at times but I will work through that. My plan is to keep working as near as I can to three days a week and just get on with my life and keep going for as long as possible. Im one day one, second week, second phase of Sutent.
