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.
Just wanted to send you a message to say what a brave and inspiring man you are, I have been keeping an eye on your blog for a long time now and you sound like you have been through hell and back. Unfortunately my family have had the worse year my grandfather passed away in June, my dad passed away in July and my mum passed away in August, and to top it all off my grandmother passed away on Thursday. But all that seems like nothing when you see what other people are going through on this site.
Thanks Jodie, I will. Its sounds like you have had a really bad year and my sympathies to you.
Your right Helen, it was a frosty start but luckily for me Justin took Mollie for her walk. I have had a real long day at work today, in fact , out the house at nine and not home until gone six. I am off tomorrow as we have a meeting with Kate's therapist which is really important. I am keen to see how they plan to help Kate after upsetting her after the last meeting. There will be no more talk of Katie saying goodbye to her daddy just yet.
The meeting went really well today and I came away feeling very reassured by kates therapist. I wish I could say the same for her senior who was in the meeting with us. He is a right job worth who was more concerned about ushering us out the door at five rather than sorting out Kates next appointment. We can see where her counselling is going and can also understand how she got to talk to Kate about saying goodbye, although with devastating affects. Kate is still a bit reluctant to go to her next appointment but im sure she will go and be fine. It gave us a chance to air our views and I feel we were listened too. I feel a bit tired as I did awake a bit early this morning but still an improvement on the middle of the night wake ups that used to be. I am planning on going to work tomorrow and possibly Friday depending on how im feeling. I am still feeling pretty good at the moment and am really looking forward to the Xmas break, Im on countdown!!
My day at work yesterday went well, until I got a phone call from Linda saying my new boss at head office had sent a letter asking for permission to contact my doctors and have a copy of my medical records. I have been honest and upfront every step of the way and wonder now why they feel the need to know more. I wonder if its more to do with the fact our company is struggling in the recession and they are looking to cost cut and they think I could be a cost saving. I am aware of my rights and will be watching every move. I have two problems connected with work, a) my work provides the Bupa cover which will be void if I leave although I have the option to take over the payments and keep the cover going, which we would, and b) I see work as therapy and gets me out of the house and means that for a few hours of the week I can even forget about living with Cancer. Anyway I will be speaking to head office today to try and find out where they are coming from and to see if I need to get advice. Kate had another therapy session yesterday and she apparently came out happy and smiling which is really good. Last night we got the Xmas tree and assembled it, Kate will decorate it later today. I am planning to go in to work again today and will hopefully be reassured about my position.
Hope you get some form of reassurance from work today. As you say, you have been nothing but honest with them so lets hope the same courtesy is extended to you. Have a good weekend, look after yourself and much love to you and your family.
Hmm, Bob, I am not too sure if your work is actually allowed to have access to your medical records.....a letter from your doctor, well I suppose they can insist on that. I do hope this doesn't turn into something nasty.....do they still have to have a quota of disabled people on the books? I'm not sure, but maybe they could classify you as that to help? After all, living with cancer is indeed a disability!
Good for Kate, I'm glad she seemed happier after the counselling, and well done her for taking over decorating the tree! A job i don't enjoy but is ok once started.
Hi Bob you certainly don't need this added worry regarding work! hope it works out o.k for you. My hubby is now medically retired due to needing a knee replacement and he was sent to an independent doc by his company for a decision, plus we provided letters from our gp and specialist as we had absolutely nothing to hide from them and like you were upfront about all of it,including the fact he is my carer.It all took many months to go through it all.
He got early retirement pension so now we are both early retired though I didn't go for a pension just left work and claimed my right to dla.
We manage on his pension as it was based as though he'd worked to 65 and with my dla, it's tight but with our savings we get by.
Regarding work as a therapy I couldn't agree more so I kept up my voluntary working with pets as therapy which also makes me feel I'm giving back to society in some small way and makes me feel better for it! Being voluntary it also means I can cancel if I don't feel well enough to go!
Keep us updated on how it goes for you!
Jackie x
p.s so pleased that Kate is doing well with her therapy too!
Well I spoke to the big man at head office but am not reassured at all but am not worried about it, what's the point.. The important thing is im still here and I have the love and support of my family to see me through it. Is it really Christmas already, where on earth has the year gone. Yesterday we put the tree up and that seemed a bit strange as last year we got a new artificial one as I wanted it to be easier for Linda this year when she was "without me". If I had known i was still gonna be here i would have saved the money and got another real one,lol, but it does look great. Today we went to he school Xmas fair which was a real treat (note the sarcasm) Linda kept calling me Bah humbug. Kate was running a stall with her friends and then went to a swimming party later on. Tonight she has another friend sleeping round and they are both very worryingly very quiet upstairs, what horrors await us. Apart from fatigue im feeling really good. Hope you are all having a good weekend.
