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 I went to cambridge to get my eyes tested and was chatting to the guy staring into the back of my eyes. "can you tell if mets from the cancer are in the back of my eyes" I asked "your eyes are clear of mets" he said "but Kidney cancer mets usually go to the brain" Thanks a bundle mate! Tonight we went to see kates new teacher who has apparently been told about all of our background and we was rather dismayed to find they had been acting out greek gods and Kate had been given the god of death. It felt like another kick in the b******s. Luckily Kate seems to have taken it all in her stride. By the way the new glasses are costing me over £250.00 so id better be around long enough to benefit from them.
Yesterday was a strange day as in that I felt almost somewhere else. I went to work in the morning but really struggled to keep my mind on my job. I took linda and Mandy to cambridge to catch a train to London where they spent the day as tourists. I called round by my mums on the way home and off to the school to pick up Kate. She ended up going round a friends house, which was probably just as well. I picked Linda and Masndy up at eight oclock and then dont remember much else about the evening. I wonder if the reality of events are finally beginning to hit home and thats why I feel so out of sorts. I even found my eyes welling up at a song on cd which ment by the time i had got to work I was already done in.
Heres for a better day today. After a crap nights sleep I actually dont feel too bad and have already walked the dog and taken Justin to work. After updating this blog I have a managment meeting at work. So suited and booted I will be off in a jiffy. I am playing about a bit with my drugs as some of them make me feel lousier than the symptons they are deseigned to control. Unfortunately Sutent being the most typical of this is the only one I cannot play around with. So some of this could be why my emotions are all over the place. Or am I just making up excuses. Also the other day we was in contact with the new vicar at one of our local churches to see if he could help us with Kate and her emotions. He was very helpfull and I am sure the time will come when he can help me.
Hi Bob just before Gary's PCT appeal for Sutent, I was warned by the partner of someone taking Sutent that one of the side effects was an increase in emotional turmoil and she specifically mentioned her husband becoming prone to weepiness whiich was quite out of character for him. Whether it is an effect or whether it's part of dealing with the change and unwelcome reality, it's impossible to say. It might be worth posting on the KCUK site, because that's where all the expert patients hang out and I've found that their knowledge bank is immense - this is the address.
Today we have a visit from the Macmillan nurse. I hope Linda finds it usefull as at the moment I am still in control and do not need Macmilling. As I had a restless night I am not planning too much today. Linda is off out to lunch so I feel a snooze comming on. I am nearing the end of the second week of Sutent and feel about the norm really
Shelia my macmillan nurse has been and we are reorganising my pills to hopefully make them work a bit better for me. I know I am a stubborn so and so and I also know Linda needs the patience of a saint to deal with me at times. I also bought up the subject of hospice care as one of my deilemas is where to spend my final days when that time comes. Linda thinks I should be at home and I am undecided. I want to do whats best for Kate and Linda and I need to be clear in my own mind that I am achieving this. I feel better again today and after a couple of "out of sorts" days I have taken control again.
hi bob im neew to this site,reading your messages i feel compared to you what im going thro is nothing to what your feeling,im 38 got 3 grown up children recently diagnosed with kidney cancer,wot a bolt out the blue tht was,i had an 8cm tumor, ive been in 2 hosp had my kidney out,im jst hme,feelin weak and exhausted, i kno i shouldnt b bt im such a pessimist wit cancer,every1 ive known who had cancer its always came bk!!!!!!!! im frightened bt tryin 2 b strong bob,hugs to you and your family
Given the fact you are just out of hospital, you will feel weak and exhausted and I find when I feel really tired its when im at my lowest. I promise you if you rest up and recover well from the operation , you will start to feel a lot better. Try to plan something nice to do so you have something to look foreward to. I know people who are in remmision long after there ops and you have to believe you will be the same. I will post to your own thread later on but in the mean time take care and dont be too hard on yourself .
The three of us, taken about two years ago
My favourite Photo taken on the cruise