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.
Well today my get up and go at last has taken the place of got up and gone. Ive managed to cut the grass (again) painted main bathroom in the house and fixed handles and other bathroom accessories. Kate has had a friend over for most of the day and tonight she has gone to stay round her house as Linda and I are off to London early in the morning. Today was my first day without Sutent for a while and it was good to wake up and not have to worry about remembering to take it. I have also taken less of my other drugs so hopefully I should be in for a better period. The plan tomorrow is to have a scan in the morning and then to meet the consultant and surgeon in the afternoon to discuss weather surgery is still an option. What worries me slightly is comming off the Sutent for more than a couple of weeks and how that will affect my other tumors. I guess I will have to trust the proffesionals. I hope nothing has changed and surgery is still a viable option.
Bob, Just wanted to wish you all the best for tomorrow, hope your scan goes well and your results are what you hope for. You seem to fit so much into your life, don't know where you get the energy from, particularly when on the high dose of Sutent! Good luck. Jan
I posted an important message last night about the "petition" some people believe they have signed about NICE's recent ruling on kidney cancer drugs.
If you know of the "petition" and believe you have recently signed it via the internet, then please do read my post and understand that you have not done so and that you need to take further steps to get your views heard by the all important date of 29th August.
Should we email to nice@nice.org.uk or is there a special contact email address? Although I am not directly affected by this type of cancer I'd like to add my voice.
If you briefly scan with your eyes (not with a computer) Kate Spall's e-mail which I copied to this page last night, and look at her Item 1 where she has "preliminary discussion" highlighted in blue, then click on that and you will be confronted with a long document where, after one click you have to identify yourself and then you can briefly fill in the reply boxes which will appear at the end of long details regarding cancer drugs.
I certainly didn't read all the document but simply read the question at the top of each reply box and added a mildly appropriate reply. The important thing is to have some response registered before the 29th August so long as it is negative against the decision.
There is some very good information and guidance there.
As for the user-friendliness (or not) of the Nice website to make your response, it is urged that everyone also sends in a hardcopy (ie real letter, or print out of the email submission) to Nice as well as doing so via the Internet. This is to avoid anything being 'lost in the ether'. However, make it clear on the hard copy that you have also (attempted to!) respond by email, so Nice cannot accuse objecters of sending in 'Mickey Mouse' protests (eg, duplicating them to up the numbers etc etc). We really do have to be squeaky clean on this.
However, I have heard that it is OK for couples and families to each send in their own protest, providing, of course, it references the patient (eg, I am wife/sister/daughter etc to Jo Bloggs, who has RCC, and has submitted his own objection to this draft guidance) - again, we don't want to give Nice the excuse for saying we are fudging the numbers.
KCUK is, so I believe, going to have a thread going whereby everyone who has written in to Nice to make their objection can post there to say that's what they've done. This, hopefully, will encourage others to do likewise, and also accumulate a 'weight of known objection' to show to the press and to Nice (should they try and play down the public objection....just as they are playing down the efficacy of the new drugs.)(I don't say that lightly, they are quite blatantly doing so both in their press release, and even more disgracefully, in interviews - exasperatingly, there are journalists who are lettting them get away with it! But we must not.)
I have copied a letter which I have today written to NICE as there is much confusion about the petition which some people think they have signed. It would be impossible for NICE to ignore a written letter so, if others have the time to write one, it would be a good idea. To ask for a response is also a good idea as then we could be sure that our views have been recorded. There is also a aprotest at NICE headquarters on the 27th of August, details of which can be found on the web. Do please try and find the time to write a letter. The document that has been posted on the NICE site is difficult to understand and even more difficult to respond to. Thanks for your time. I am on a mission. Jennie
National Institute for Health and Clinical Excellence Renal cell carcinoma - appraisal consultation MidCity Place 71 High Holborn London WC1V 6NA
19th August 2005
Dear Sirs
NICE Efforts to Stop the Kidney Cancer Treatment Process
I am writing to you as the wife of a kidney cancer patient. My husband is sixty four years of age and has advanced kidney cancer grade IV at stage III. Luckily for him, his health insurance that he has paid for through his work for many years has so far foot the bill for his supply of Sunitinib. However, should he still be with us at this time next year, that insurance will end and we shall be then faced with the dilemma that so many other cancer sufferers are facing. So, on their behalf, as well as our own, I am protesting at the recent decision made by NICE.
David has been taking the drug for well over a year now and the wellbeing he has experienced during that time is not something that can be measured financially. He has continued to be a useful employee, a great husband, father and grandfather and an active member of our local golf club where he plays golf two or three times a week. According to the recent statement by NICE, this quality of life is not worth the expenditure on Sunitinib and other cancer drugs.
I, and a great many people am only too aware that this announcement was made whilst Parliament is on summer leave and the Olympics being televised thereby “playing down” the impact of the decision. In fact, we cannot be fooled.
The decision is wrong.
Please respond to my letter as I would like to have confirmation that my views will be recorded.
Just to add briefly - another good reason for taking a 'hard copy' of any email submission to Nice is that you can send a cc of it to your MP - the more they realise this issue is NOT going away quietly (or even going away noisily!), the better.
I don't really understand what Nice and the government (of whatever political colour it may be) imagines is going to happen? Does it seriously think that cancer patients (not just kidney cancer patients, as they turn down funding for new drugs for all sorts of cancers) will simply accept the Nice executioner's axe?
Do Nice not undertsand that cancer patients are fighting for their lives!!!
When your back is against the wall (or rather, the gaping grave), it is human nature to fight to the death (!!!!). What else does Nice imagine? This issue of drug funding will never go away! How can it possibly do so?
This is a battle we cannot give up on, and we cannot lose - ie, it will simply go on until cancer patients (and all paitents suffering with any life-threatening condition) get the best medical treatment available. Because the alternative - premature death - is unacceptable.
Keeping citizens alive is the primary duty of any government - how could it be anything else? How can any government seriously say that it's more important to offer free tattoo removal and veruka treatment (two of the things I read you get free on the NHS!) than it is to preserve life?
Nice and the Department of Health (or should that be Nasty and the Department of Premature Death?) had better be digging in for a long seige, because that is what they are going to get. It would save a lot of time, hassle and money - by the government as well as the patients fighting this at the most difficult time of their lives - if the government just accepted right now that it has made the wrong call on cancer drugs, and do what it has been elected to do, serve the interests of its citizens.
I just wanted to say I've watched a news item on BBC24 http://www.bbc.co.uk/iplayer/episode/b00d6801/b00d67ym/ about an RCC patient who, most fortunately, had health insurance, which meant he did not have to accept the NHS's kind offer to keep him alive for a bare five months, and so got Sutent instead, and is now alive (and looking extremely well!) l8 months later.
The presenter said at the end - do you have a similar story, and suggested those who did could contact the programme via the website, or via email yournews@bbc.co.uk
Julia
Bob - as ever, I'm so sorry to be butting in like this on your thread - maybe we should just have a 'Nice protest' thread to unite all the posts that are coming in on that subject. Also wanted to say how very heart-warming your own blog is, which shows what can be done in terms of still 'living the good life', even with this terrible disease. All power to your elbow (and your typing fingers!)
