BOB JK My diary of kidney cancer (to be continued)
FormerMember
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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.
Bets of luck - and my apologies to Bob for using histhread for this - but 63 is no age is it. When i was turned down they said it was because they had enough data in my circumstances - bloody stupid thing to say to the teachiung hospital that was running the tests for the drug!!
I think maybe that it is why I got allowed on appeal so quickly but my oncologict said I don;t give a damn what they say i will get it for you and he did.
I hope that you and your dad get a good result from this but don't stop fighting for it will you.
great to hear from you in Brisburn.and thanks for your message of support. My initial operation involved removal of the end of two ribs, the top of my sturnum and part of my collarbone.Once it was realised the cancer had spread I was so lucky to get Sutent. Please fight for the Sutent, I know a chap who was refused but with relentless fighting and even a spot in the local rag the pct caved in and he has been on it for a year with outstanding results. He certainly helped to get me in the right frame of mind for a fight but luckily I didn't need to. Im glad my diary helps others as much as it helps me to tell it. good luck with the scan and id love to herar from you again.
Im very glad your following my diary. I have just read your profile and can relate to your statement "tests are bad for your health." I felt abolutely fine before I had the first test,but since then it has been a rollercoster of developments. You have certainly been through such a lot but you remain positivr which is so important. I can also relate to your fears about your daughter. My dad and his mum both died from Cancer and with me now in the firing line I worry about kate. I suppose at least she will have regular checks if found to be genetically linked.I really hope,like your daughter,that they escape the curse. speak to you again
Good luck with your mums scan tommorow and CT scan in May. Pass to her please my good wishes and good luck. I really hope her news is good newsand I will try to follow her progress. If you find time to update me on this thread that would be great
Good to hear from you as always and good luck with your second cycle. Im sure you will do well as you have the right attitude. I totally agree with your thoughts on downunders post and can only encourage them to fight with all their might as it does make a difference. If you shout loud enough someone must listen
Thanks everyone for your posts on my thread. its really good to have input from others. Tomorrow i go to London to have chat with god 2 (professor Gore) god 1 was mr Laddas who performed my complex chest surgery I will keep you updated and thanks once again.
Hi Bob, so happy to hear of your good results.You and your family must be so pleased. By what I have gathered from this site and others these new drugs are really effective. So many people are seeing great results including my Dave. Louise - just wanted to say you have a wonderful support with the Pamela Nothcott Fund (Kate) she was the person who helped my partner get Nexavar and she has just had another win in Lincolnshire pct for Sutent. Good Luck .Excuse me Bob but I know you won't mind me throwing that in. Positive thoughts to you all-Sandra
Thanks Sandra , no of course I dont mind. Sutent has been a lifeline fo myself and so many others and it should be available to all who need it,regardless of where they live. We must all keep this at the top of the agenda. somewhere on this site there is a petition to downing street regarding this drug. I have already signed it along with my wife. also may I add my good luck wishes to louise.
Hi all I just wanted to dedicate this post to my lovely wife Linda who has painstakingly been sorting out all of our financial issues. I know how difficult it has been for her, but through her selfless actions we will be able to do a lot more with whatever time we have left.
I know you read my threads so thank you Linda for looking after myself and Kate through this rather testing time
I love you loads and loads now and forever Bob XXXXXXXXXXXXXXXX
Hi Bob, how are you this morning - just looked up the sutent petyition and it has closed so I was a bit late there after all my shouting about telling the GVMNT what we think - oh well next time for definate!!
Hope you are feeling good and looking forward to the day,
