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 Your words brought a tightness to my chest, remembering from seeing my sister caring for me last year. My daughter used to come up with glasses of water, or just come and sit on the bed - it was terrible when I was too weak to even talk to her. She's 13 as you know, older than Katie, and she dealt with it very quietly and I was so anxious that it would effect her - there is only me for her. It wasn't until we put in for Race for Life that she has opened up and told me she was 'quite' upset. I suspect it goes deeper but we are carrying on life as we did before my cancer, for her anyway - I can't pick up where I left off. I think this is the key - children, especially at 8, rely on routine as a security, to know what's happening and that their sleepover/party will happen. I suspect that through no fault of yours that this pattern, routine, has had to be broken sometimes. She will be picking up on your anxiety too, (as well as the obvious physical changes) and they can't understand the why at that age so what you see is frustration too. We didn't have any Macmillan support but I am told they are very experienced in the effects of cancer on the family. I hope she can give you some advice and reassurance today. There have been many discussions on the forums about the effect of cancer on the carer and close family, and some have gone so far as to say it is more difficult for them than the patient. Perhaps it is emotionally. I also discovered though that as the cancer patient, I also had the role of being the reassurer for my family - and still continue to be. It is hard, and I don't always feel strong enough, but the next day I will be. Stay strong Bob, they know you love them - that it is the most important thing for Katie, as you know. Wishing you well in this next cycle - take good care of yourself. Fi x
Thanks for that Fiona I can relate to everything you have said. I certainly will stay strong and positive. That is my way. I hope things are ok for you also and as I am now off to lunch, having spent the last hour with macmillan nurse I will update my post properly later on. Take care
WellI m sure the macmilan nurse is very helpfull towards the end of your life , but at the moment I find she does not really help me. She very much keeps talking about the end and how to cope with it. Im sure the time will come when I need that but NOT YET. I am going to see my doctor next week as my certificate runs out and I am hoping she will allow me to go back to work next month. I know it will have to be part time and very flexiable as I will have off days and appointments. I need to get back to work to bring about some kind of normality.
Hi Bob my partner Dave (OF 37 YEARS) has kidney cancer with mets to bone , brain and nod on lung, hey thats the good one. Today after 3 months of sorofenib he got a good result. Stable and 20% shrinkage on kidney ---RESULT am enjoying your blog keep it up we all need someone to tell it how it goes. Sandra xxx
Thanks for your reply Sandra. what an good result for Dave. Lets hope the shrinkage continues. You only have to read the news and there are some wonderful drugs being developed for the treatment of Cancer. Good luck fot the future Sandra and keep me posted.If possible Please show your support for Katie 8 yrs old doing the "race for life" for her daddy.
Hi Day 4 of second cycle and I feel pretty good. yesterday we went to kates easter assembly which was very good. It nearly moved me to tears as childrens singing always does.then I bravely undertook the assembly of a flat pack chest of drawers (a challenge for anyone). In the afternoon I had visitors. Today I hope to go to work for a few hours
Well I went to work for about four hours this morning and really enjoyed it. I managed to sort a couple of problems out and had a brief team meeting. Feel pretty tired tonight but pleased with my achievements
