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.
Drove for the first time today since my operation and feel a whole lot better. Sally and little Emily are over from Santa Barbara and it is really good to see them again. Today I also got the all clear to fly, so as soon as I know where I am going with the Sutent we will be booking a flight. I desperately need some sun to cheer me up and im gonna have it. Just eaten a chineese takaway which was also very nice and well recieved by my tempremental stomach(so far).
Had a really nice day yesterday. After a realy good night sleep, which must have been due to the secret sleeping potion Kate and Emily sprayed all over our pillow, we went to cambridge in the morning and done some retail therapy. Once home, time to rest before evening meal with all my sisters and mum. Myself and sally preped meal and it was really nice. Julie and Krysia made some wonderful deserts so by the finish we were all well and truly stuffed. We then talked into the night untill late which was really nice. My sleep was not so good last night. I awoke with a sicky feeling and just felt generally uncomfortable. I ended up getting out of bed for a couple of hours untill symptons settled. Today we are off to Angelsey Abbey which is a national trust property whith lots of ground for Kate and Emily to run around in. Having Emily over has been a great tonic for Kate and I think, for a while, she has been a normal little girl without worrying about her daddy.
Cant sleep so here I am again. Ive had a really good day, spending most of it with my eldest sister Krysia. Its the first time we have had a chance to really talk and I think it done us both good. Her daughter is off tomorrow on a year long vacation to Australia and what a great time she will have. I look foreward to seing lots of pictures on her return. Sally and Emily go back to America on Thursday so tomorrow is the last time we will see them for a while. Kate will really miss Emilly but hopefully we will return the visit in the not to distant future. I plan to work tomorrow for half a day and if all goes well will do another half day before the week ends. The Sutent side affects are still mainly fatigue and blood pressure. I also change colour regularly and will need to buy more shirts if I am not to clash. After this week I have one more before my scan. Of course I am a bit nervous but optamistic of a good outcome. Anyway I hope you all had a good easter and will talk again soon.
I managed four hours at work today and although its really taken its toll on me im so glad I done it. Sitting at my desk, it felt as if I havn,t been away. All the mess I left when I finished work just before christmas was wtill their to be done. After work I came home and collapsed on the sofa before yet another meal out (Its no wonder as soon as I get home I remove belt and top trouser button) Sally and Emily leave our area tomorrow to start their journey back to America so we had a meal out with them and my mum. My neice Laura also left today for her trip and I hope she has a really great time. Im sure Krysia, Nigel and Joanne will find the house a bit quieter without her but she will soon be back. Lots of people have been asking me how they can sponsor kate in the race for life so we have set up an on line sponsor form. www.raceforlifesponsorme.org/katejacubiak many thanks for those that have already sponsored her. The advantage of going to the site above is you get to see a lovely picture of myself and kate, the same picture that is on the front of her memory box.
Ive just done my round robin of private messaging and its so good to hear from people, Everybody in the house is in slumberland but I seem to have got into the pattern of awaking at about 4 am. My faithfull labradoor Mollie is by my side and is my costant companion.(apart from Linda and Kate of course) Its amazing how she just never leaves my side and if im feeling at all down, she lookes at me through those big brown eyes and wills me to make a fuss of her to lift me. Yesterday was not a good day, I think I overdid it at work the day before. To say I felt worn out was a gross understatment. I am going back to work today but not for so long. I saw Sally and Emilly last night which was a tad emotional as they return to Santa Barbara today. We hope to visit them later in the year. Im glad Julie, Krysia and mum are fairly local and so are easier to keep in contact with. Kate and Emily forged a brilliant friendship which I hope will continue by email and Phone calls.
Yesterday I done a shorter day at work and so far today I feel ok so that must be the key. I suppose I have to accept that my life has changed and things I took for granted before I cannot now do. Kate is going out today with her nan and grandad so I can relax knowing she is not bored or wanting for anything. Guess what? im out for another meal on Saturday evening with some of my old St John Ambulance collegues. I belonged to St johns for about 35 years and really enjoyed my time there. In fact thats where I met my lovely wife linda as her sons also used to belong. I am nearing the end of week three of the second cycle of Sutent and no drastic side affects apart frpm the usual fatigue and blood pressure. one more week to go until the scan and then 5 days until the result.
I'm not sure what the time is , but Ive just spent an hour or so with Kate crying in her bed. As Linda and I went to bed we could hear sobbing and went and sat with her. .After Linda went down Kate and I talked for a while and I think it done her good. She told me that she cries most nights and when at her friends on a sleep over even cries in her sleep We talked about my dad and Adam who both died from Cancer and we both imagined what they were doing now in heaven. Kate also asked me if I still knew anyone alive who has Cancer and we spoke about those people also. She gets upset because of the side affects of the Sutent and is worried that I will stop fighting. I assured her that I will never stop fighting, I couldn't , I look at her tear stained face and I want to live for as long as possible. I think she is beginning to realise that I might not get better and I am trying to get her to think of heaven as a lovely place to go. We also decided that once in heaven you would look down at our family and take care of them. I assured her that when I go to heaven I would look down and say "get your homework done, clean your teeth" and all the other nags I do. I found tonight very hard but I think a very necessary process to go through with Kate. The more reassured she becomes of the future, whatever it holds, the easier it will be for her and Linda when my time does come (but not yet you hear).
Hi Bob, what a great Dad you are, your Kate will always know that. Don't think I have anything left to say except Dave and I despite 37 years together have no children. Never intended, just happened. Right now I am sorry about that as I know he is sick (1V stage)and I would love to have a junior him!! Thats all, hope you have a good day tomorrow, follow your diary , I think you are helping a lot of people just by relating your experience. Keep it up _ Love Sandra
Yesterday we went into Cambridge to try and sort out our financial issues with the mortgage company. As I am now only working one day a week, the rest of my pay is made up with the governments very generous statutory sick pay ( me sarcastic? no). Anyway we are well on the way to getting it resolved which will be great.. Whilst in Cambridge we left Kate with her nan and grandad at their local church helping out with a coffee morning. She also took part in some art and people there also sponsored her for her race for life. Once home I went to bed for a few hours as I was walloped. Later in the evening we went out to a St John Ambulance dinner which was very nice although the service wasn't brilliant. It was really good to meet up with people who I had not seen for a long while. This morning I feel cold and my stomach feels jippy, hopefully just a bug. Today , not too much going on and just plan to rest. I hope you all have a good weekend
Having had trouble going to sleep in the first place I found myself awake at some unearthly hour this morning, hence the early posting. Not a good day yesterday,I could not get warm and looked grey all day.I also had no energy.My get up and go had got up and gone. I also felt breathless and generally uncomfortable. My stomach appears bloated and swollen (possibly fluid retention) If I could see it, im sure my bum resembles that of a baboon. It feels so sore and fresh blood on paper a daily occurance (sorry about the graphics). So far I feel a bit better today but if things do not improve then I suppose I will have to inform hospital at London.Today I am going round my brother in laws to dogsit for a while. Im then thinking sleep will be the order of the day.Hopefully a better day awaits me.
