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.
hi i know its late but once again cant sleep my head in a twist will i be ok what about my kids i am so scared about my op that i am having nxt tuesday are you ok
Hello Bob, Fay, Ros and all, I have just been on reading everyone's update. Good luck with your scan results, Bob, my mother also gets slightly breathless and she has nodules on both lungs but last scan showed no change. She seems to be coping better with the Sutent, and for a few days last week, felt like there was nothing at all wrong with her, which was brilliant. Her symptoms, when she has them, are fatigue, weak, wobbly legs, restless legs in bed at night, and sore gums. From reading others posts, I feel really grateful that she was approved to receive Sutent, and I signed the petition for it to become available to all. She has an appt with a neurologist on 7 July to discuss whether or not to operate on the tumour at the top of her spine, as this will cause spinal compression if it grows. My father, who has Non Hodgkins Lymphoma, and who wasn't well at all a few weeks ago, has recently been told he is in remission, so it is good news all around. I had been off work due to my parents illness and am now to return on a part time basis with a view to returning full time if things remain stable. It is good to hear how others are coping, it seems that all Sutent users are doing well at the moment, and I see that there are a couple of new people who have kidney cancer posting. Best wishes to all, Jan
Well my news from the specialist was a bit confusing so I am waiting for a written report . It would seem that one of the nodules in my lungs has got slightly bigger, but apparently the Sutent is doing its job?? I would have thought if the Sutent was doing its job then tumors would be stable, or is that just the kidney ones (bearing in mind nodules are origin from kidney (one for you sally to ask your medic friends). Although I awoke a couple of times in the night, generally I had a more comfortable night and feel pretty good this morning. I am going to ring specialist this morning to try and get report emailed or faxed across to make more sense of it. I assume if one nodule is growing it will need to be zapped or removed at some point. Ive been told that they wish to get kidneys sorted as far as possible before touching lungs. Anyway no major problems to report. We went to Tom and Kates new house yesterday and they are well settled in which is good. Ive achieved my first aim of being around to help them into their new house, My next aim is to be around to see them get married and to be Toms best man.
Hi to Jan and Michelle and all and I hope you are doing OK. I hope my pm helped michelle, There are lots of people on this site all going through the same emotions as yourself,some at the same stage as you and some further on, so support in all areas is possible.
Stay positive everyone as far as possible and if you can enjoy the warm weather. My tan which I was building up for the cruise has turned from a nice healthy brown to a really sickly orange so I should be a good attraction on the ship.
hi i am still trying to get the hang of using the internet iv read so many moving things on here i have always wanted to talk to others who are going through the same my family who i love with all my heart try and keep me strong and i feel i have to for them but there are times when i want to cry scream the anger i feel at having had bowel cancer 2yrs ago then being told that i have a rare type of cancer and last mth had a brain anyrusum that lost me the sight in my right eye now my op to remove my right kidney i just hope that it is the cancer thats there this time has anyone else had this rare type of cancer id love to hear of you if you have any way thats it about me i hope your ok and everything goes well for you and everyone else x
hi i am still trying to get the hang of using the internet iv read so many moving things on here i have always wanted to talk to others who are going through the same my family who i love with all my heart try and keep me strong and i feel i have to for them but there are times when i want to cry scream the anger i feel at having had bowel cancer 2yrs ago then being told that i have a rare type of cancer and last mth had a brain anyrusum that lost me the sight in my right eye now my op to remove my right kidney i just hope that it is the cancer thats there this time has anyone else had this rare type of cancer id love to hear of you if you have any way thats it about me i hope your ok and everything goes well for you and everyone else x
my husband was diagnosed with kidney cancer spread to both lungs, adrenal glands and abdominal sac, back in March. All the medics agreed that the only course open to him is Sutent. We applied to the PCT for funding but were rejected and we have just been given the date for appeal - 4th July. So, 4 months without treatment and now we're trying to gear ourselves up for the next ordeal. When he was first diagnosed, he was really well but with a slight ache in his side. Wihin a week we had this disease overrunning our lives and projecting us into some parallel universe. I still feel as though the me here and now is some sort of virtual me and that really the proper me is back in the old world with Gary the big, physical person he always was. Every examination he has ends up with the medic saying how strong, fit and healthy he is, terminal cancer aside. Some irony there! So, if anyone has any ideas as to how to behave before the PCT panel - please shout them loud and clear. I'm promising myself to hold onto my feelings - I've never felt so consumed with anger towards a body of people as I do towards them. To have to beg and plead to have to endure the immensity of the stress generated by the whole process is an outrage. Sorry, Bob, this is meant to be your diary abut I thought you would understand best of wishes Ange
No problem Ange. I know someone who went through the same ordeal before finally being accepted. I know that their friends set up a fund raising committee to raise money to pay for the first course of treatment, the last being a bar-b-q style garden party. Once the local press got hold of this , the pct were almost shamed into allowing the funding. I dont know if this helps, but good luck and please keep in touch.
Hi Bob, Thought i'd drop you a post as i'm new to the discussion forum and wanted to say thanks for the posts you have posted me. It was my sisiter-in-law that found the discussion room, as i was looking to go to a support group. Just waiting for the results of my CT Scan that i had on Monday. Going up to Guys Hospital London to see my consultant and find out. Cross fingers things are stable.Still working on this SUTENT thing Bob. So frustrated and angry. Simon Chowdry my consultant who has been fantastic wants to put me on INTERFEARON as opposed to SUTENT if the results are not good Monday. We are still looking at the SUTENT but he has been told in the meantime till Bromley PCT change there minds, Interfearon would be the best route possible. Bob, just can't understand the mentality of these PCT'S. May well have to go down the route your friend did and shame Bromley PCT. Hope you have managed to get your report e-mailed or faxed across for you to make sense of it. Joining this discussion forum has been just what i needed. My thoughts and wishes are are with you. Stay positive. Many Thanks
No problem for the posts and I hope that they helped you in some small way. I have got my report faxed across and basically it is saying a nodule in my right lower lung is bigger, but this is compared to the first scan before my op. I have had another scan since the op with my other consultant so that will be a better guage of how things are going. My full body scan is only just over a week away so not long to wait. Keep working on the Sutent Arniekj and good luck with the scan results.
