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 i am still trying to get the hang of sending messages so please bare with me i just want to thank everyone for whishing me good luck for my op that il be having on wednesday im going in to hospital tomorrow ready for my op i am scared stiff il be glad to get this op over and done with just hope they dont cancel it this time iv been in alot of pain today in my right side doctor said its due to my kidney love to you all michelle xx
Well, what a great day ive had today. We went to Kates sports day and what a fun morning it was. They changed the formatt this year and had loud music playing whilst the teams went around the field to take part in the variouse challenges. We dutifully followed our team round and my voice was hoarse from mall the shouting and encouragment. our team did eventually win which was great. Also I had the honour of presenting the cups to the runner up team and the winning team. On the down side myself and Linda got well and truly sun burnt which is not recommended for a Sutent user. We have since smothered ourself with aftersun which has helped a bit. From the school we went to a local coffee shop for a light lunch. I tried a itallian mushroom muffin which is the first thing ive eaten all week which tasted normal and not metalic. Also my breathlessness has seemed a bit better today, so although Ive had a bit of a rough few days I seem to be comming out the other end of the tunnel. I hope youve all had a good day and please dont overdo the sun. Tommorow I will smother myself in sun cream and try to stick to the shade.
Hi All, What good news eh if it happenes the new ruling where everyone gets the medications they need, im just keeping my fingers crossed it happens for all you people out there who have to beg for Sutent. Im still not feeling as good as i have this last month but time will tell its either me just finishing Sutent or the blood transfusions waring off. Its been a hot one today so i felt a bit more out of breath and tired, the sun dosent seem to agree with me, i feel tingly on my hands and arms, does anyone else feel like that? Keep possitive, love and blessings to you all, Fay.
Last night Kate was inconsolable worrying about her daddys Cancer and is it going to get any worse. What on earth do you tell her. we always are honest with her but that was a tough call. Because at this stage we really do not know, because of the Sutent, we were able to turn her negative thoughts into a bit more positive thought. We told her that the doctors are doing all they can. We explained that the Sutent had shrunk the tumors and there was a chance they could reduce further, but also that they might not. She knows that things are grim because she mentioned to her mummy" if daddy dies will you marry someone else" . All we can do is be as honest as we can. We cannot take away the pain of what we are all going through but we can hopefully prepare Kate for what lies ahead so when the time does come she is perhaps a bit prepared for it.
oh my gosh bob, what do u tell katie. i often say; use words she will understand. thats all theory tho. i have worked with children for many years, all ages, however i find it hard to explain to ants brothers about his cancer. they are 11years and 7 years old. his 11yr brother knows everything and we cant hide anything from him. i thought ants youngest brother was not so aware, but when he states: if you dont take your medicine anthony youll die. how do u answer that, i do but its like a blur and i cant think exactly what i said and hope i dont scare him. they both carry a lot of burden at a young age. i still have thier christmas wishes up in the kitchen, and instead of material things wish one is for ants cancer to be cured.!! the boys resilience amaze me. i love them so much. kates strength must be admired, questions will pop up , i am sure u will find the right words to say.
have a brill day bob and try not to get to sunburned. we are off to france sunday for 18 nights. we asked the consultant if it was necessary to have ants bloods taken regularly and as they are usually fine she said that it would be fine to miss it this month and could be done before we went and after. love to all your family. ros x
We had the appeal this morning. It lasted 1 hour, but the panel of 4 only managed to ask 2 questions between them. They rang us less than 2 hours later to tell us we'd been successful! I still can't quite believe it, that we can now divert our energies to fighting the cancer. I'll be posting you on the Sutent users site, shortly, If anyone posts in wanting help re PCT applications, I'm more than happy to send them copies of our submissions. I can't offer anything like the advice that Kate Spall, Rose Woodward or Julia Clark can, but I can talk about how it feels from the partner's perspective and how we approached the whole business. Best of wishes to you all Ange
Hi Bob, Sorry to hear you have been going through difficult times with Katies questions. Its amazing the resilience kids have and what they understand when we think they wont, im sure both you and Linda will handle it the best you can, its heart wrenching and i sympathise.Stay strong, Fay.
