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.
Thank you so much for your posting. I Love your idea of meeting in dreams. Kate suffers badly at night time and can take a real long time getting to sleep only to be awoken by "bad dreams". The feelings book for Kate works really well as she can write out her worries, anger, feelings and basically just how she feels at the time of writing. She knows it is up to her if she shows it to anyone. She does show us, especially Linda and when she has a better day, its good for her to look in her book and see that not all days are bad. Like you, I have step children, three boys, and like you I love them like my own and they, bless them love me back the same. I thing being a step dad is such a privilege. I look in all their eyes and I see the worry and fear for what is happening now and for what will come in the time ahead. As you say, the worried looks crush your insides. They all do their fair share of fussing and are always on hand to help Linda whenever needed. As far as I am concerned, I am their dad and Matt, Justin and Tommy, you are my sons.
Hope Things are ok with you Sarah, and thanks again for the response
Really good to hear from you again. Im glad David is spoilt rotten when he goes in for respite care. I know they are good places. Now I wouldn't want you to think im stubborn, hell no, not me, but I think I might have to be nearly unconscious to be admitted. Im all for telephone advice, at a push,my local doctors and at an even bigger push London. I know I probably will end up going in, but not yet eh. I hope David remains comfortable and do not forget to look after yourself.
Well, what a funny old day it has been. After spending what seemed like an age, confined to bed, This morning I though, this is it. I though I need to impress Linda here else she will never buy it. "cup of tea dear" I staggered downstairs still feeling pretty unsteady and between frequent rests, managed a brew. I swagged upstairs and after presenting my lovely brew thought id better get my pills down. Now Linda is always telling me to space my pills out a bit and usually, although I do take them all near together I get away with it. Hell, not this time, I forgot im on a different cocktail with the antibiotics. I had taken my Sutent a bit earlier and as normal thought "down the hatch". I managed to get downstairs and then it was quickly a case of "back up the hatch". unfortunately im not a quiet sicker so despite barricading myself in the downstairs loo I could not hide the fact. That was all my Brownie points wiped out in an instant. Anyway, this did not stop my resolve and after kate had got ready for her dance exam, I ran a bath and had a good soak. I came to get out of the bath and could not find my legs as they were so wibbly wobbly, Not one to tell Linda. I ahve since been dressed and sat downstairs watching some soppy old movie Kate seems to enjoy watching over and over again. I also made myself go outside and adjust her new bike for her so her feet could reach the ground better. To do this I had to find a different way of fitting the rear reflector. I did it, but it nearly did me in as well.
I di feel a bit better now. Appetite is still a problem, toiletries not good either. Still a bit shakey on the old pins but im still breathing so that must be good. I think the antibiotics are kicking in a bit as some of the shivers have gone. As a footnote, I did ask Linda if I should cut the grass, send your entries to ...........
Shaking my head and tut tutting, Bob, though my word, you push that poor girl to the limit don't you:-) But good for you, my friend, I'm sure Linda wouldn't have you any other way.....well apart from that incessant grass cutting obsession. You really make me smile, you're an absolute star.
You are right he is a Star, bless him. I so admire the way he tries to make it okay for everyone, he is completely protective of all his family.
Son no's 2 and 3 home from holiday and coming today, i have never ever in my life been so relieved to have offers of extra pair of hands, it's really tough. This is the most challenging and scary ( we both feel that) situation we have ever experienced.
Bob is still finding it really difficult to eat, only thing he ate yesterday was small piece of meat, drinking more of a problem to, in terms of it makes him feel sick just thinking of having either. He slept well, and remains quite sleepy, as energy levels will be low with all going on. Of course being on the antibiotics is not helping with the nausea, so will be speaking to GP tomorrow to review again.
Bob relented on the grass, not steady enough on his legs, if he can when my back is turned he may crawl out the door and attempt it !!!!!!!!!!!!!!!
Sorry nto hear your struggling at the moment Bob, take that time off work and recharge your batteries. Ive just come back from Jersey and had a great time and made more happy memories for my Sister, i got really tired and out of breath so the 4 days was just enough. Were off to scotland this week so i hope my energy levals increase mind you i can just enjoy the scenary if i cant walk about. Take good care of yourself Bob, ill keep checking on you Love yo all Fay. X
Well i thought last week was bad!! nothing would have prepared me for the events of today.
Bob slept quite well, after being very sick last night. He awoke, managed a bit of toast and then said i need to go to the bathroom, to do a wee and provide a sample for testing. Luckily Kate was occupied with breakfast and tv downstairs.
Crash, thud, Bob faints, as he falls cracks his head on the toilet. Wee specimen still intact in his hand, as i rush into the bathroom, he comes round holding sample intact by some miracle!!
The next half hour are really scary as Bob, up on chair in toilet starts to fit, making a terrific gasping noise, he came round for a couple of minutes only to start fitting again.
GP visited and feels its all due to infection and low blood pressure inducing fits, rather than progression of brain mets. Anyway total bedrest, District Nurses have been to bring equipment, and pressure relieving bits.
Bob feels well groggy understandably but looking forward to his bed bath, (he will be lucky). Just going to take a day at a time to see where it takes us.
I have had the support of my best friend Sue, and brother and sister in law Sue, who have made phone calls, lunch, shopping, they really have been fantastic all day.
This has been the most scariest day of the whole journey, but we are both fighting this bloody disease with all our might still!!! Our little girls is Eleven a week Wednesday and there is no way Daddy is going anywhere before that. She knew all was not well but managed to completely keep Daddy fitting from her, she has as usual been a little princess, as she knew with all the people visiting all was not okay.
Bob will be doing the next update, i am that sure he is going to be better tomorrow.
