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.
Hope the day went off o.k Bob. I've had another fun day chasing non existant ct scan results for tomorrow and getting given out of date bloodtest results going back to April? Had to return to doc to get newest bloodtest but couldn't get the scan ones seems the guy isn't in until tomorrow as he's on hols? surely someone else can do these reports? aaargh
Let us all know how you get on! Jane my online buddy who had her femur broken from kidney mets is on the mend had op Monday and it went very well, so much so they are doing the other femur next Monday before it has a chance to break.
Miracles are happening all the time with cancer breakthroughs there is hope for all of us!
Jackie, I can understand your frustration, I remember when we were given the wrong scan results and the report suggested further shrinkage in my tumours but in fact it turned out they had increased slightly. Talk about playing with your emotions.
Thanks for all your messages of support yesterday. I decided that there was no point in Linda coming with me so early in the morning when I was going to be moved from pillar to post having frame fitted, then scans and then treatment, so I had a lift in with a friend who works in London. We set off at five and arrived on the dot at half six. I was taken straight to my room and had to have the usual round of tests to make sure I was fit enough for the surgery. All was well and I was told to change into one of those lovely gowns. At least they gave me a lovely pair of disposable pants to wear which really were very flattering. Once ready I was taken down, at about eight to have the frame fitted. This part I was secretly dreading and as I arrived in the waiting area I got talking to this foreign lady who's younger sister was having a tumour treated. I could see she was nervous for her sister so set out to reassure her that once the frame was in place, the rest was in fact fine. Bless her, she was soon saying prayers for the two of us and in due course her sister appeared togged up with frame in place and you could tell she had found it most difficult. I gave her a reassuring smile and told her the rest was very easy and not to worry. She took comfort from that and then it was my turn. Into the chair I sat and it was a bit like a dentist chair and they unpacked all the necessary bits and got to work. Firstly they placed the frame on my head and then after carefully positioning correctly injected anaesthetic into the four fixing points. two in the forehead and two in the back. Three of them were ok but the fourth was really painful but did not last for long. Then proffessor Lippitz proceeded to use a allen key to turn in these titanium bolts through my skin and into my scull for a depth of 5mm. It actually did not seem as bad as last time as last time and actually managed to joke with him whether his last job was that of a car mechanic. Another nurse who was wiping dripping blood from my eye was laughing so much she could hardly concentrate. Then I was moved straight into the scanner and was bolted down so my head could not move and had a half hourish scan. Then I was taken back to my room to rest up whilst they checked on the position of the two / three tumours. I managed to eat a sarnie and drink a coffee without spilling too much of it. Its not easy to eat and drink with this frame fitted. After about three hours I was called back downstairs to have the treatment. At that point they told me that there were in fact ten tumours, all very small but non the less very relevant.. That came as a bit of a shock but as I said to Linda later, at least it made the pain of the treatment more worth while. So what I thought would be a hour stint in the gamma machine turned into nearly three. The worst part of that is the boredom and the fact that because again your head is bolted it becomes uncomfortable after a time. By the time the three hours were up I was ready to sit up and stretch a bit. Then I was taken back to the fitting room to have the cage removed which was uncomfortable but not painfull then back to my room. Linda was there and we had a nice hug before being offered some food. My dinner was sarnies again as I had missed lunch but that was fine and at least later I had a nice mixed grill for tea, a great benifit of being a Bupa member. I was determined to go home last night and even though I had a stonking headache I assured the nurses and professor I was fine and we left soon after tea. A brilliant drive home by Linda we arrived home two hours later to collapse for the evening. Katie came up to me, gave me a huge hug and then handed me this little verse she had written which neary reduced me to tears
I was doing fine until I came to the end of your post...I now know where Katie gets her spirit from.....Well done on getting through yesterday, and I am certain Linda is making you rest up today, (as much as she can in any case!)
Dear Bob - I hope you have no plans for this weekend?? It sounds like you need to rest a lot after yesterday's treatment. I was cringing as I read it............and then your daughter's little poem. I need wipers for my specs/monitor/desk......everywhere is soggy!!! '...out of the mouths of babes...' as they say!!!!! Love and (((((hugs))))) to you and your family Dot xxxxxxxx
I was cringing as they fitted the frame Dot but it really was not as bad as I expected. isn't Katie's little poem heart-rending. Poor thing had her council ling session yesterday and the lady spoke to her about how she would say goodbye and the fact I was really ill. That really upset her and I feel the councillor is being premature in using such strong and direct terms. If the end was near I could perhaps understand but as far as I know, unless she knows different, I still have time on my side. I do understand they need to prepare Kate for when I really go down hill and ultimately die but surely they can be a bit more sensitive to her needs.
Yesterday I had a really good day and did far too much, especially when Linda popped out for a bit, but I did own up to it this morning when she was half awake and I felt safe to do so. It was dark when she came back from popping out so didn't notice that I had cut the grass and done some edging and weeding as well. And then last night myself and Justin popped over to our other sons house to do a bit of work that was needed over their. I came home about ten, tired but very satisfied with my achievements. Today we are having a new flooring laid in our hallway and downstairs loo so am unable to do much today so will be a forced rest. I have changed the timing of taking all my other tablets apart from my main Sutent. I now take all these last thing at night, rather than first thing in the morning. That gives the night for my tummy to settle and seems to be better so far. I am due to start back on the Sutent on Wednesday and that, I will still take first thing in the morning, I think.
Hi Bob pleased to read you are still very much active and doing what you want to. I personally take sutent around tea time and seem to sleep through the worst of it, I used to have my interferon jabs at night too! I split beta blocker and blood pressure though doing blood pressure tab am and beta blocker at night! Don't know if it does any good doing it this way but doc agrees with me about it. I still am off the blood pressure ones until cycle 7 of sutent starts to kick in around the end of the 2nd week, then blood pressure will rise once again. When are you next due a ct or mri to see how good this last treatment has been? It is an ongoing journey with hospitals and scans isn't it. I'm getting use to the routine of it all now and plan my life around it all as I expect you do too! I'm already looking ahead to my sons wedding next March! and meeting my youngest sons 'blind date' as she's coming over to uk from Canada next January, he's so taken with her so it's romance all round. Are you set for christmas yet? I've just about done all the present buying and wrapping, made my cakes and only have my cards to write, I've made them all again this year. I'm quite pleased with myself. Hope your weekend is restful with your family admiring all your handiwork!
Bob I have followed your story from afar for such a long time, I have felt the need to reply so many times, but never more so than reading Kate's poem. You are an inspiration and so are your lovely family. My profile gives some of my reason for being here but it has been just too painful to update recently. I have 2 little girls and if they show half the courage of your little Kate then their Nanny and myself will be even more proud of them than we already are. I will continue to read and admire.
