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.
Sorry to hear you're so tired today Bob, I too have to use a wheelchair at present as I find it too painful to walk. I'll ask gp about the suggestion you make for cramp! Thanks for that!
Well I think I can safely say that week three and four are going to be my worst weeks on the Sutent. What a lousy weekend I've had. Today again I've felt bloody awful with stomach ache, feeling sick, feeling faint and generally feeling really tired. Im sure it was this bad when I was on it before and im sure I will soon get used to it as before. Today we have had a bit of a house full for lunch which was nice. I did manage to eat a bit but as soon as I had finished I felt sick again. Tomorrow we will be going to see citizens advice over my work issues and to get an idea of what to do next.. If I carry on feeling like this it will not be an issue as there is no way I could work. I am booked in to do two days work next week then its holiday time until after Xmas.
Keep focusing on the holiday bit Bob and it will feel better I'm sure! I'm on my 2wk break from sutent this coming Thurs and can't wait. It's been a tough month but I think the cramp in my leg hasn't helped any, it seems a bit better today and I managed to get round lidl with the trolley and no wheelchair. It's a balancing act between side effects and doing well.
I have anti sickness tabs for when I feel sick they help a lot, I haven't had tummy upset I think my codeine counteracts that! My apetite is always pretty good but when a bit off I turn to wholesome soup not too hot! Tesco's own and covent garden soups are delicious Bob.
I havent replied on here for a while (although I always read your pages and keep up to date!) - but I just wanted to pop in and wish you and your family a lovely time at Christmas.
When I was diagnosed with kidney cancer just over a year ago - you were one of the first people to offer advice and support, and I have remained thankful ever since. You do manage to strike a good balance on here of being truthful and yet humourous! Thankyou for your explanations, advice and honesty.....
I hope the sickness and tiredness subside, allowing you to enjoy all the delights that Christmas brings!
Bob, I do hope the CAB is of good help to you, my hopes that the queue isn't too big......
And I do hope that you feel better ready for Christmas.....Caz is doing her usual thing of being busy, in spite of this new treatment and the weekly testing, she is touring with Sting! (Paris and Baden Baden!) She had to book a cheap flight so she can get back for bloods!
Thanks all once again and good to hear from you Caz
This morning we went to C A B and after getting their for nine we were nice and earl for doors opening at half nine. The lady we saw did her best but wasn't that much help.it seems we do not have a specialist advisor in the field we need so she gave us a couple of web sites to look at and said we must not worry (all right for her). I have felt much better today. I had a good nights sleep and awoke quite refreshed and rested. I feel less tired and tummy pain has subsided a lot. I seem to be coming out in spots on my arms and also a bit of a rash on one arm, not sure what that's all about. I think I have lost a stone in three nights but im sure I will soon put that back on. Today we went to Cambridge and changed our mobile phones as both were up for renewal. So now we both have a mobile phone that neither of us know how to use which is a bit of a laugh. Tonight we went to see Kate at her Christmas play which was really good.. Tomorrow I am planning to go to work for a while and see how I get on.
Today went ok. I slept really well and feel quite a bit better again. After dropping off Kate to school Linda took me in to work and I managed until about half four. We had a problem with the electrics at work which meant no heating all afternoon which as I am always freezing anyway was not helpful. Tonight we are out at Linda's brothers for tea so at least no cooking tonight. At the moment my appetite and tummy are both a bit suspect but hopefully both will behave them self. I am now working Monday next week so have finished work for this week , which is good. Tomorrow I am going to the doctors to discuss rash and spots and also to talk to him regarding medical records to see if he can shed any light on the matter. It seems to me there are very few people out there totally confident enough to advise us.. So all i all a good day but im very glad im off now. I am definitely finding work a lot harder than I was and for the first time am wondering how long I can carry on working for.
Another fair day today, I awoke a bit early and could not drop off so rather than wake Linda, I came downstairs and watched a bit of TV before finally snoozing again. After Linda had taken Kate to school I managed to get an appointment with the doctor. We had a good chat and she has prescribed some mild steroid cream for the rash and spots. We also spoke about my work situation as it will be her giving the medical report. Once home it was time for a good snooze again. Tonight Kate has been back to school for her final performance. Back home and getting ready for bed she is a happy girl which is nice when some days she struggles to smile because of all what is going on. It seems so unfair that my little girl has to go through this. Im not worried for myself but I am desperately worried for those that I will be leaving behind, they do not deserve this.
Bob, I know you're having tough time of it at the moment, and also worrying about the family, especially little Kate. You hang in there, my friend, you're such an incredible fighter, an inspiration to everyone.
Hoping today is more kind to you. Big, big hugs, to you, Linda, Kate and the boys.
