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 to all I Had a bit of a scare in the night, I woke up about one in the morning with tummy pains I have never experienced before. I was doubled up in agony for about two hours. We had been to lunch with my sister Julie and her family so perhaps she is trying to finish me off with food poisoning (only kidding Julie) I really dont know what was going on but I took some strong pain killers and feel ok now. I hope is nothink to worry about and was just a bug or something. Today we are having a relaxing day before our friends come round tonight for a chineese takeaway. I just hope I can literally stomach it. how are you all doing and what are your plans?
Well, last night was much better. Slept right through until 07.30 Our friends came over to see us and bought a chineese take away with them. My appetite was fairly good and my tummy behaved itself. Our friends also bought over their two labrador puppies and we introduced them to our lab Mollie. All dogs behaved themselves and we took some very cute pictures. Today we are off for another meal (does he only eat I hear you all asking). Once home I'm sure sleep will prevail for a while. I am nearing the end of week one , 2nd cycle of Sutent and its going really well. I look off colour at times and feet fatigue like no other but I can put up with that. I hope every one on this site has a very happy Easter and follows my fine example and eats many easter egg's. Also a very happy Easter to Linda, Kate, Tom and Katie, Matt and Justin xxx
Had a bit of a reality check yesterday. Tommy my youngest stepson sobbing in my arms because he was frightened of what the future holds. Its funny I seem to be able to cope with everything at the moment. I know I can.t be cured and that any treatment given will just prolong my life for as long as possible, But sometimes I forget the affect it has on those around me.I know the three boys look apon me almost as their real dad.I certainly think of them as my sons and would bend over backwards to help them out. I feel so humbled that they should shed tears over me and I so wish I could make things easier for them. I spend so much time worrying about our youngest little girl Kate and ILinda I suppose I assume the eldest ones are copeing. It was really moveing to give Tommy a big hug but I wish I could do more to help him. He is getting married in May next year and I so hope I am still around to be there for him. I still remain positive about my future, I have to. The sutent is having ,in my opinion only mild side effects and if it holds back the Cancer for a while ,then great.
Start of second week of second cycle of Sutent and feeling really tired but ok. I am hopefully beginning to map out my best times for work or activities and also when best to rest. Blood pressure is being kept low by one tablet and so far there are few other side affects. Long may it continue.
Well now I have a new challenge, my company who I have worked for for over thirty something years are stopping my salary as from now and just paying statutary sick pay. I need this like a hole in the head.
Well I thought beating the Cancer was going to be a challenge but I feel trying to sort out our financial affairs will be an even bigger one. We are trying to make contact with the Citizens Advice but cannot seem to get through by phone so will have to land on their doorstep to get action.
Hi Bob, I've read the whole of your diary with interest as I was diagnosed with kidney cancer last October. I too have had my left kidney removed along with a further tumor. I have other lesions in my lung, throat, groin and peri-aorta and am taking sutent. I start my second cycle next monday and haven't really had any side effects so far. I am having to take morphine and various other pain killers due to swollen lymph nodes in my back pressing on nerves which was making any movement almost impossible to bear. To top it all I'm also about to have a course of radiotherapy the week after next for some small lesions on my spine. On the other hadn I apparantly have had the cancer for nearly ten years so it does seem to grow slowly in my case.
Your last post mentioned finances after your company stopped your pay, have you checked that you aren't enrolled in any private sick pay/salary protection schemes via your company or its pension plan, sometimes you can be without knowing about it. Also check to see whether you have any mortgage or loan repayment policies if thats applicable. If you have any life cover in place it may also include critical illness protection.
If none of these are in place you did say you had started back at work part time - does the company have any form of "rehabilitation" scheme for people returning to work. If it does have then this should mean that you can get full pay (rather than sick pay) whilst slowly building up to working full time. Most complanies sick pay arrangements are calculated on a rolling 12 month basis - so that means that if you are off work again in the future you should gain back some sick pay days before benefit should stop.
I'm sure that the Citizens Advice will have other ideas but maybe some of these will help. All the best anyway.
Thanks for reading my diary and thanks for your suggestions regarding finances. Some of them we have already looked into and the others I will see if they apply. I see you have not posted a profile but read your thread with interest. please keep in touch .
I am posting for Bob today as he wants to keep his diary up,but not feeling so well. He seems to have more side effect with Sutent this time, BP up again, and really itchy hands and feet, worse problem for him at moment is tiredness and breathlessness.
We are looking forward tomorrow to a visit from Bob's sister and her daughter who is 9, they live in America, and our Katie is certainly just a tad excited about it.
Anyhow, a good nights sleep and I sure Bob will be back to posting himself tomorrow.
Please give Bob our love and tell him that we miss him on here. We hope that you all have a great visit with Bob's sister. Just the tonic he needs! Have a fantastic time.
