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.
Im glad I can still bring a smile to a face occasionally, Rhona and hope things are ok with you.
A quiet day yesterday, after a good nights sleep we awoke and did our usual round of cleaning and washing before popping out to do a bit of shopping, I do love that, not. Julie and mum popped over and had tea with us. Wev talked a bit about our Cancer journey and perused over the most recent medical report I have neen given. It is a well written report which gives a good history of my treatment and dates and I have copied it and carry one around in my wallet in case I come to grief away from London (i do have good ideas sometimes). I am now on day three, 5th cycle of phase two, of sutent. I cannot remember how many cycles I had on phase one, before the break for my two partial nephrectomys but was a years worth. I feel pretty good albeit a bit grey in colour and easily tired. my hair is gradually changing colour but it doesnt matter if it goes sky blue now as it will fall out soon anyway. my stomach is behaving itself and no need for ice cold loo rolls yet (that will be in week 4 and 5) I still get the slight shakes at times and co-ordenation can be a problem at times, i just managed to miss my mouth with coffee and soak keyboard. My yes continue to struggle to focus at times and my glasses are off and on like nobodys buisness. Tinitus is still ringing in my ears but I can usually forget about it during the day. It is so strange how your Cancer expectations and hope change through your journey. When i first started this journey, the idea of having whole brain radiotherapy and loosing my hair for what is essentially a bit of a last hope attempt at prolonging life would have filled me with horror, but when we thought that chance might not be available to us, now that it is we are celebratory about it and are even having a bit of a party on saturday evening. We are also very much looking foreward to our trip aboard the British Pullman next Friday, I will be dusting down my suit I wore for our cruise. We get a 5 course lunch as part of the proceedings .
Thanks Bob, things are in the waiting faze again (my post titled terrified will explain if you want a look). We will hear on Wednesday and need to know what we are dealing with but terrified at the same time :-(
Hope you enjoy your party on Saturday and your lovely 5 course lunch next Friday, you deserve to.
So good to see you back in full flow again. You are such an inspiration to me and give me so much insight to this ghastly disease. Unfortunately, my hubby will not discuss it at all. Hopefully once he starts treatment next week, he may be more forthcoming. At the moment he sees it as (in his actual words)...."it's someone else who has it, and anyway it will get better". All I can do just now is to go along and do things his way and scream in silence. There are so many questions I want to ask the onc but can't as he doesn't want to know. I have been advised by the clinic nurse to as onc at end of Tues meeting if I can have a few minutes with him on my own and as long as hubby agrees, which he said he does, I can finally, hopefully, get some answers. However, between yourself and Jackie, I have gleaned so much and cannot thank you both enough for your support.
Hope you have a great trip on the British Pullman next Friday, but meantime, enjoy your party on Saturday.
I havent posted for such a long time but it doesnt mean that dont think about you and all the other cancer fighters and I read about you all the time.
It is 8 months since Iost my darling Steve whose cancer showed no signs until it was too late to treat.
Continue enjoying your good times - they are so vital to you and your family .
How do you cope Bob, I would dearly love to know. My lovely Steve and I knew from day one that there was nothing that could be done to preserve his life- he never complained - but I never knew how he felt inside - could you tell me how you feel? He just seemed to be focused on how me and our daughter would cope - sorting out finances so that everything was in place for us when the time came. He was such a brave man - just like you Bob xxx
Hi Sue, How do I cope, I wish I knew, I just do. I think from day one I accepted that I might only, if lucky, last the original prognosis of 6 months but am forever hopefull of doing better. I always try to keep busy as in my mind, not doing much is almost like giving up. I always try to push the boundarys and try and keep positive. At times, especially lately, after the brain was involved, I feel doomed but soon work myself out of that. My family spur me on and support me in every way possible. The other week, when my ten year old clung on to me crying and saying "please dont leave me daddy" that was enough to spur me into action and I vowed at that point, even if the risks were a bit high, that I would try anything. I fight on for my family , in memory of those gone too soon and also for everyone on this site facing their own battle, To try and spur them on into outwitting this bloody illness.
Bob and Helen, the warmest of hugs to you both, I only wish that our lovely niece had, had half of the spirit and determination to beat this bloody disease, that you have Bob, also your beautiful daughter Helen. bless you all. You are both such an inspiration to so many on this forum.
Well said Bob.......we all need large doses of your PMA (Positive Mental Attitude) to help us fight on........humour, tenacity, a willingness to give anything a go to win our fight rather than sit back and let the insidious invader take over...........Keep on keeping on Bob we are with you all the way...........Love and (((hugs) to you and yours.........Dot xxxxxxxx
