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.
Many thanks for your messages, Im sorry sam you have been through so much with Jane and I pray she will carry on doing ok for as long as she can. None of us truly know how long we have got and all you can do is make the most of it. Fay I had a much better night last night. In fact when we got home from the race for life I laid on the sofa and slept untill about 10.00 and then went to bed and carried on sleeping.
It wqas great seeing kate do the "race for life" and bless her she done really well. She took part with some of her friends and their parents and completed the course in about an hour. She had lots of supporters there to cheer her on and has managed to raise nearly £2000.00. It was a very emotional day and to read some of the messages on the backs of the other runners was heartbreaking. The local radio station was there and one particular record they played had Linda and my sisters in tears, I just about managed to hold it in After the race we were invited to a celebratory bar-b-q. which was very good.
Today is definately a chill out day, I hope you all had a good week end
Well ive sort of had a chill day today. This morning I popped down to mums to pick up yet more plants for the garden which is brilliant. I seem to have more plants in trays than actually planted but as soon as weather breaks I will get them in. I also has a visit from my branch manager at work and it was good to catch up on all the work gossip. I think my department is struggling a lot without me but I cannot do much about that at the moment. I have started on some new pills to try and give me better nights sleep so it will be interesting to see if they work. I have felt quite good today and it would seem I am finally entering my good period within the Sutent cycle. Did anyone read in the press about Sutent. hopefully the publicity will fuel the debate to make it available to all on the NHS. I go to London tomorrow to have bloodtests as well as pick up m,y next supply of Sutent. I also see my chest surgeon to have my operation area checked before flying to Poland on Friday. So a long day tommorow. Hope you are all well.
Hi Bob, Glad you are feeling better. I hope your new pills help you sleep better, i always feel better during the day after ive had a good nights sleep.I have read in the press and seen it discussed on the tele about Sutent, i feel sure one day it will be available to all who need it. My consultant Proffesor Hawkins is often on the tele talking about it as he fights all he can to get it for all who will benefit. I had my blood transfusion yesterday and i do feel a little bit more sprightly, i have to go back on Thursday to get my scan results, i cant wait although i am a bit nervous. Are you holidaying in Poland?if you are have a nice time.Take care Fay.
I am so new at this that I don't even know if I am even doing things right.
I just wanted to say that every time I have a visit with the doctor I am terrified. Last week I went in numb with fear and was told that I had amazing results on sutent with over 70% shrinkage of all tumors.
But everyday more than once a day I find myself fearing that the sutent will stop working.
I truly understand the ups and downs of emotions and wonder if there is a way to overcome them, will there come a day when I won't even think about the cancer or the sutent?
Hi to Violetsrblue, I can understand your fear and I am sure this is something all of us in the "Sutent club" go through. I havent had a chance to read your thread yet But I will. My diagnosis and subsequent treatment all happened so fast I have not had time to be scared but there are times when I wonder how long the Sutent will work. You have to keep positive and focus on the fact that you are lucky enough to be on Sutent and I take great strength from the fact that, like in your and my case, it works wonders on the tumors. Also I know of someone who has been on Sutent for a year and his tumors are still shrinking. All of this buys us sufferers time for the possibility of operations or further drug trials. I admit to having dark thoughts occasionally but I live my life the best I can and make the most of it. I promise you it does get easier with time and if you wish to request me as a friend I will gladly support you. In the meantime stay in touch and good luck.
Well today Linda and myself took the new car for a spin to London. I had a consultation with my chest surgeon who wants to do another scan just to check my lung function as I still get very short of breath at times. I have also picked up my 4th cycle of Sutent to start on Monday. I am tired today but as I drove today (my choice) it is no wonder. I think the shortness of breath is a Sutent side effect but good to be scanned and checked.
Im glad you are feeling more active Fay, long may it continue. I go to Poland on friday and have instructions today about my injections I need 4 times during the journey. Linda cant wait to start sticking that needle into me!! Anyway im off for a lie down to decide my next job, probably to cut grass if I can muster the energy. I hope you have all had a good day.
Hi Violetsrblue, I can understand how you feel as a cancer victim myself, but the way i cope is to try hard not to think of it and get on with my life the best way i can and make the most of every day cos if you think about it you could get knocked down by a bus, we never know what our future is, dont get me wrong i have wobbly moments as i call them and i could cry for hours but that wont do me any good as i am a great believer in staying strong cos if depression sets in you whole body suffers not only your mind. I have to go for my results of my 2nd scan tomorrow and i am also worried, as i think we all think, how long will it work, we wouldent be normal if we dident, my last scan showed a 10% reduction on all my tumours so im hoping for at least that, i cant believe you had a 70% reduction thats absolutly wonderful , it makes my 10% seem very little so i think you are very lucky and ill keep my fingers crossed for you you carry on getting those results as i have heard of people whos tumours that have gone altogether.I hope there will be a day when you will just get on with your life and put cancer to the back of your mind and think of other things you would normally think of ,if you dident have cancer, as i havent read your profile yet i dont know what you condition is, but i will and then ill understand a bit better,read mine if you want to,it all helps to compare notes. If you look back on Bobs thread you will find a link to click on to that he started where we have put the drugs we are on etc.We are also lucky to get Sutent as there are many people who cant get it. Keep your chin up and keep in touch, were on this site most days. Love Fay.
Hi Bob, Glad all seems to be ok with you. You breathlessness is probobly Sutant as it is a side effect, i hope it is anyway. I am interested in these injections you have to take for your journey, is it Clexane? i used to be on Clexane as i have blood clots but after i had that massive heamatoma they were stopped so because of this i cant fly at all and would dearly love to visit my friend in France. Do you have the same problem with blood clots and thats why your having the injections ?Good luck to Linda with the injections you wont feel it, i used to do my own. Any have a great time. Fay.
