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.
A brilliant nights sleep but again I feel pretty grotty. My head is spinning really badly and i keep getting horrible tinnitus or something simular.I have definately felt better. I will not be going in to work today. I did bring some work home with me to do today but cannot face it at the moment. I am hopefull its just a head cold but cannot wonder at times if its the brain mets on the move. Even if it turns out that they are, we will deal with it. We had quite a hard talk with the councellor yesterday and he brought up the subject of a memory box for Kate and goodbye letters and things. We both found that quite hard to talk about. Im aware that I do need to do these things and I did try to do a dvd disk for all of them quite early on but that turned into a disaster. After setting up camera and computer, I couldnt think of what to say and instead went for a bath to have time to think. On my returt to the bedroom I promptly blacked out and poor old Matt found me lying on the floor like a beached whale. I used to give lectures for St John Ambulance and am also thing of doing some sort of talk about my journey which could be recorded and given to all to show them of my battle to stay with them for as long as possible. We have started a memory box and I plan to write letters for everyone. I also plan to somehow print out all of this diary again to show the journey and to share my experiences ive had with all of you.
Aww, Bob, what a tough thing to think about, but at least you are facing it with the grit and determination that you have shown us throughout this thread......my love and hugs to you all
At least I slept quite well last night, if only for a short time. We were in bed by ten and I was awake downstairs by 4.30. I do feel slightly better today although my head is still doi ng some weird and wonderfull things. Once Linda and Kate were up I went back to bed for a bit and have spent the morning watching tv. I did go for a quick shower but when I came out, felt pretty wobbly and had to lie down for a bit. I was going to ring the London hospital today and speak to one of my team, but as I feel slight improvement has been made Ill leave them to deal with the real emergencies. I have just had a spot of lunch and Linda, Kate and Justin are all downstairs. Kate is going through a real difficult time at the moment and its so difficult to know what to do to help her. I think she has moved on a stage in her own mind about my illness and even blames herself for it. Poor Linda has been talking to her on and off this morning and at the moment she seems a bit more settled. The trouble is Cancer is so unpredictable and no one can give her the answers she wants to hear, that im going to be ok. At what point do we tell her that, actually, im not going to be ok and this cancer is going to kill me. A tough call indeed.
Another lazy day today, The plan was for us all to go to Cambridge todat but that wasnt an option for me. Tom and katie stayed over last night and we had a nice relaxing evening. Kate was at a stay over party and by all accounts they stayed awake most of the night so as you can imagine she is a delight today!!
At times I feel im getting a bit better but then I get the spinning head and feel real bad again. I do think overall im a bit better but will possibly go see the doctor tomorrow. It could be something as simple as a ear infection and a course of tablets would soon kick that into shape.
I am still struggling around this site but as my concerns to the mac team seem to go unnoticed I have no option but to keep on struggling as im sure we all are. I hope it will get easier as time goes on. I do feel as if I have lost a lot of my friends as well as all of my other threads I started.
Hi Maui ans Sita, good to hear from you both. I will probably go and see my doc today to get something sorted out. I awoke early today and as Mollie came and lay beside me, as normal, I could hear her poor tummy making strange noises so I took it apon myself, and much to Lindas anger, to take Mollie outside for a walk. I know Linda desperately worries about me but she cannot wrap me up in cotton wool. "What if you collapsed" she said. "I had my phone" I replied without thinking it would not be a lot of good to me in my collapsed state. Oh dear.
Head is still causing me discomfort but not quite as bad as when I first got it (I think) I am nearing the second week of my second cyclem second phase of Sutent and so far, so good. Some of the achy joints are kicking in a bit including the areas where my operations have been carried out, especially the chest scar which is normally one of the first to start playing up. I suspect I will not get to work this week but you know me, never say no.
Oh, Bob, what will we do with you?! You should at least TRY to take notice of Linda! Work shouldn't be an option at the moment but I know you do love to try!
Sorry to hear that Kate is having problems, I do hope her counselling will help her come to terms with all that's going on.
Hi Bob JK, I have'nt heard from you for quite a while, and I did send you a mesage last week, I assume that something technical must have happened. How are you? I have just completed the first week of my Sutent cycle, and am due to visit the CT scan dep this evening, yes I know , they have made me an evening appointment. I have had quite a peaceful weekend, each evening spent in the bedroom as everyone else in the household has been watching the X Factor, a programe I do not enjoy. Still tonight is the best night with university challenge, masterchef, and then the new documentary Life with Mr Attenborough. good programes all around. I am thinking of buying a car, something second hand reliable and cheap, any ideas? I would like to ensure that the vehicle I buy has depreciated as much as possible. Did you see the Jenson Button race yesterday? Take care MARIO
