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.
Hi Bob, can I underline what you say regarding private health insurance! it took me 18months hard slog of newspaper interviews, bbc recordings and videos and many ,many letters to my pct and finally engaging a solicitor to get my sutent funding, before they backed down and gave their o.k !
I was not considered worth the cost and was told it would only give me a couple of extra months at most according to the pct. Well here I am 7monthly cycles later and just about to undergo cycle 8 from tomorrow! Both ct scans to date have shown the drug to be working miracles in shrinking and totally killing off my lung mets. Am I worth it? of course I am and so is anyone else who should get these life prolonging drugs! I hope if the need arises for you to get a new drug then bupa will be there for you! Don't worry unduly about lowering the sutent dose though as so many others have found this a necessary option, keeping on the 50mg is bl--dy tough! results for others I know on the lower doses are just as encouraging!
How's your credit card doing? are Linda and Katie still giving it a bashing lol.
Hi Bob and your family and friends, happy new year, and wish you all the luck in the world for 2010, hope you can afford a shandy for 12 tonight now that Linda and Kate have finished with your card. XXXX Thats if they have lol.
Bob, my best wishes for a Happy New Year, hugs for you and your family and friends, and may the Sutent, on whatever dose, work for you as it has already, if no, then may you get a new drug which works even better
Today has been ok with the side effects settling down nicely. I have been tired but was still able to walk Mollie this morning and also do a couple of outside jobs, boy was it cold but it was good to get the works done. Tonight Justin surprised us by turning up with Tommy and Katie who are sorting our tea tonight and staying to see in the new year with us. I cannot think of a more perfect way to see in the new year. Kate, bless her is like our older daughter and I for one would be very proud to be her dad, she is so good to us.
After a late night seeing in the new year I slept like a baby, did not wake during the night and awoke eventually at eight this morning. I feel again better and so seem to be coming out of my bad period of Sutent. So as before, my worst two weeks on the Sutent are my last week on and first week off. My tummy seems to have settled down nicely and so I can ease off some of the drugs. Its a nice feeling knowing I made it in to 2010 and my next aim is to limp along to 2011. Today we have just had a lovely lamb and chicken roast which was really nice and went down a treat. I am bit full up for pud but I'm sure once I have had a bit of a snooze I will manage a bit.
Another real good nights sleep. probably the best I've had in a long time. I did not walk the dog today as others were on hand to do it. I did however carry out a repair to a dodgy tap which was spraying everywhere but in the sink. I feel well out of the bad stage of my cycle but am mentally prepared for when it comes around again in about three weeks time. We have had a bit more of the white stuff falling but that seems to be turning to rain. Not too much planned today. Kate has a friend round which will keep her and us occupied. she is also staying the night. Appetite has been really good over the last couple of days so any weight loss will soon be back on. My colour is quite good but the old greyness of the hair is beginning to take hold a bit more. I'm sure in a few weeks time I will look very distinguished indeed..
