BOB JK My diary of kidney cancer (to be continued)
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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.
Today Linda and I went to the royal marsden hospital for my scan and discussions regarding operations. Yet again the goal posts appear to have been moved but not particularly in a negative way. After the oncologist and the surgeon looked at my scan result they think the tumors have reduced further and so would like to keep me on the Sutent for the time being. I was a bit miffed as I had syked myself up for the operation but thinking about it I am reasonably happy with todays result. If they operate I will be off the Sutent and that would give a chance for existing and new tumors to grow. As my oncologist said the thing to remember is that the Sutent is working and that is the best outcome. We also asked about prognoses but he was a bity evasive about that one. In my own mind I reckon I could have anything from a further 6 months to possible 2 more years but of cours I will be aiming further than that. So we came away from the hospital with my four week dose of aches, colour changes, sore feet and tummy upsets. Oh its good to be alive.
Bob, nice to read your diary as you seem to put this awfull thing into perspective. Hope all goes well with the stutent and am sure your posative thoughts help. Keep up the fight and take care. A gold medal for you and your family.
I have been to work today and all has been well. I feel pretty good and achieved quite a lot in my four hours. back home and I aim to do somw decorating tonight if energy levels hold out. I hope you are all OK
Another fair day today but felt a bit sereal at work mulling over the events of Tuesday at the hospital. Its a funny old feeling im having. I might be around for 6 months , a year, even two or thee, who knows if im really lucky possibly five but in five to ten years time I will be a gonner, only a memory, what a funny feelinhg that is and its rather difficult to come to terms with it. My positivity has taken a bit of a bashing over the last three days but I know I will bounce back, I really have to. I care far too much for Linda , Kate the boys and the rest of my family to die too soon.
Sorry to hear you sound a bit spooked, Bob - please don't forget that elsewhere in the world, where Sutent has been around for so much longer, on so many more patients, than in the UK, there are numbers of people who have been on it for several years, and are NDY (not dead yet!). And who knows, who knows, what may come around the corner in terms of treatment, in five years or so? Who saw Sutent coming, before it did?
I had my own 'spooked' moment tonight, as we watched the News and saw Dear Old BoJo in Beijing talking about the London Olympics, and realised, with a shaft of terror, that my husband might not be around to watch it.....
But we can't, just can't, let negative thoughts dominate. I know that citing one tragedy over another is, in its own way, negative, but think of all the people who have no idea that they aren't going to be around for the London Olympics - because a road accident, a heart attack, or even a plane disaster like the horrendous tragedy in Spain, may prevent them.
You are always so positive, so upbeat, it's been a real eye-opener to read your blog, and an inspiration too. I know that it's unfair to expect you always to put on a good spin for us, and if you want your downer-times, that's only fair. Hopefully, then it becomes someone else's turn to cheer you up.
In the end, none of us know the day nor the hour - and you won't be 'just a memory' - you'll be a cherished, treasured, beloved treausure in the hearts of your family, every hour of their lives. You will have grandchildren named after you, and be held so, so close in their hearts. And in their dreams. I still dream, decades later, of my own parents, and they are as real to me in my dreams of them, as they were in life. I can never lose them. (And, believe me, my mother is STILL informing me that I don't keep the house clean enough!)
As for whether we go on,after death, well, one day, we'll all find out. And maybe we'll find that just as it is impossible to describe to an insect what, say Shakespeare is, or Rembrant, or even Mama Mia (!), so we, too, may find that we have been regarded as the Insects of the Sentient Beings World, SO primitive we actually thought this life was all there is....
Good night, and thank you again for writing such a cheering blog. Julia.
Im off to not so sunny centre parcs today with family so that should snap me out of my sorry state. We hope to do plenty of swimming, some walking and bike riding. After a really good nights sleep and a bit of a heart to heart with Linda I feel more refreshed and ready for all the challenges ahead. I feel very lucky to be on Sutent and will do my upmost to do it justice by being around for a long time yet. I am a positive person and that positivity will prevail and carry me through. I hope you all have a really good weekend and hopefully a glimmer of sun.
Hi Bob and everyone else I'm always so impressed by your energy and involvement, you're allowed to wobble from time to time, we all do it. If I think about the future beyond the immediate, I start to panic, but then, as Julia, remind myself that we none of us know what lies ahead, including that big red bus! Just as a quick reminder to all, sorry Bob to hijack your diary, but I've copied part of an e-mail I got today from KCUK:
Kidney Cancer Patients N I C E demonstration 27th August London 12.00 noon
The Kidney Cancer Support Group in Oxford are arranging for a delegation of patients, families and friends to go to the London Headquarters of N I C E for 12.00 noon on Wednesday 27th August. They intend to deliver letters of protest about the draft decision on the refusal to fund the 4 kidney cancer drugs by hand They still have places available on the coach that is being provided by the James Whale Fund to take them to London and return to Oxford that afternoon.
The James Whale Fund for Kidney Cancer are also providing 100 T-shirts and banners and will be doing a Press Releases about the day. Others are now joining in this protest and the hope is to have 50 + patients and supporters - the more the better and KCUK will do more events in the following months in the run up to the final N I C E decision day early next year.
If not, you can make your own travel arrangements and arrange to be at the N I C E Headquarters at 12.00noon
National Institute for Health and Clinical Excellence
Hi Bob and All, Well im back from our tour of Scotland, we came back last weekend but i dont seemed to have had a minute since we came back getting my house in order. We had a wonderful time in Scotland, we toured all round the east coast up to John a Groats and over to Skye and then down the west coast, what a beautiful place, so clean and well maintained, good roads, with ALL grass verges trimed and i have never seen so many hanging baskets, every where we looked there were flowers, so if anyone out there hasent been its a must. I felt fine so long as didnt walk far but as we always camped near a beach which were all ground leval no cliffs i was fine and able to have a paddle, the last two weeks i felt lathargic and tired more so than normal but i was on my worst part of the sutant cycle. On tues i had to go to Christies again for my scan and also the out patients clinic, the good news is my tumours have shrunk again, im not sure by how much as my consultant just had a brief look before i saw him in clinic but he said he had to look twice as he didnt see anything in my lungs at first, so im delighted. My blood count was low again so yesterday i spent the day in hospital having a blood transfusion, that explained why i was so lethargic, aparently as a sutant patient your blood count does drop to about 9 but below nine you benifit from a transfusion mine was 8.6.Ive felt a lot better today it definatly helps. Well Bob there seem to be such a lot happened since i last signed on and you seemed to have had your ups and downs, you have always struck me as a very possitive person but we can all get depressed at times, i asked my oncology nurse what my prognosis was yesterday and she said its very difficult to say, she siad as long as your responding to sutant its good, she had a patient who is still on it after nearly 3 yrs and its still working, thats as much as she would say and as were all different i suppose its difficult to say, and who knows whats round the corner with new treatment. I concider myself EXTREAMLY LUCKY to have got sutant with so many who cant get it and now their talking about stopping cancer drugs for kidney patients, i cant believe how people who make these disisions sleep at night, and the money thats wasted on other things that aint our busines or shouldnt be. Im gonna have to spend some time reading back to find out how everyone is but for now i just wanted to say hello again and wish you all loads and loads of good luck with your health in the future and ill catch up another day. Stay possitive love Fay
