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.
Today has been a bit of a bitter sweet day but more sweet than bitter.
We got the bone scan results and they look very encouraging. No spread to be seen which is really good. The down side is my wound which is not holding out very well at all and is breaking down and deep at certain points. My oncologist is sending us back to London tomorrow for the surgeon to have a look at it and it will probably require deep stitching and whatever else they feel it needs. Im sorry Linda you wil have to drive me yet again tomorrow my darling. Today we did a London bus tour as we were done early and had a great time. the weather was hot, just how I like it and we relaxed and had a real good time.
Where am I now as far as my treatment goes, well , thanks to the Sutent I need to change my status from terminal to ongoing treatment. We need to get my wound healed and then the next step will be a more detailed scan of my lungs which came as a bit of a supprise as we thought they would just keep an eye on them, now he seems to want to treat them. I asked about having that scan sooner but he rightly said their is no point as treatment is not possible until wound has healed and thats at least a month off. He said If scan showed movement of tumours I would be ringing him every day for a plan, damn right I would so its probably best not to know at this stage. So all in all I do feel good about the way things are going, forever gratefull for the chance of Sutent and thankfull for the new chance it has given me. On my facebook profile I put my main aim in life is to live long enough to see Kate start secondary school. That is now looking more likely.
Really really so happy for you that everything is going so well for you. I'm sure your positive attitude has helped you and long may it last. It's such a great feeling when you come away from your results consultation and its all good news. The worry of the waiting for results vanishes and the sense of relief is overwhelming and at least you know that sutent has and will work for you again.
Unfortunately sutent didn't work for Tony as well. His side effects were so bad for the amount of benefit it was giving him that he has stopped treatment and has opted for a new clinical trial. He was admitted to the Marsden today to hopefully drain fluid from his abdomen which has made him increasingly uncomfortable and in some pain. We are both really tired because he hasn't been able to sleep very well. I will be visiting him tomorrow so if I wander into Granard House I'll keep my eye open for you and say hello!
Thanks Jackie, I know Sutent isn't for everyone and I really hope he fairs better on the trial.
We are getting Kate ready for school and will be taking her shortly before coming home for breakfast and coffee. At some stage a bit later on we will start the journey back to london to see if anything needs to be done with wound. After a full on day yesterday I feel a bit tired but not too bad. Some of the jobs I was planning to do this week I have put on hold until next week. I have to be a bit sensible here in case I need to go back on the Sutent for my lung mets and they will not even scan untill wound is healed.
Bob, so the news so far as it went was good, I'm really pleased! I do hope that the wound can hurry up with whatever they need to do, to help heal it, I bet your tame nurse will be so pleased if its healed, too!
If you like this heat, then enjoy this week! love and hugs for you all
London went exactly as I thought and hoped it would go. The surgeon looked at the wound and decided it was fine and in fact is granulating and healing ok without further stitching. This goes to show Linda has been doing a grand job and he thinks it will probably be ok in a couple of weeks. We took Lindas car today and I loved it with the roof down, topping up my tan. We have just picked up kate and its fair to say we are both well and truly knackered and looking foreward to an evening of rest. Tomorrow will also be a chance to catch up on all the other jobs we have neglected over the last couple of days.
That is just great, I'm so pleased for you all, Linda must feel really bucked!
Now just make sure you do any work on the cool of the day, you like the heat but while you are still recovering, don't get too hot! Plenty of water, too, don't i sound like an old nag, hey!?!
Hahaha, Bob, just trying to help your Linda with her nursing! Seriously, I am really happy its going so well
Hi Bob, Glad to hear your wound is healing and your on the right path to recovery and youll be able to drop the word terminal, hgow fantastic is that, well done !!!!!!!. I went for my scan results today and the doc is really pleased that after 18 months of being on sutent its still working, i go to see the surgeon next week but i dont think he will want to take the risk of taking my kiney out, but well see. Keep up the good work, love Fay.
I'm really pleased that you're healing well and the news from both surgeon & oncologist is so good.
We had a horrendous visit to the hospital on Monday. Although we had decided between us 10 days ago that Tony would go on Sutent, the system is such that the pharmacist can't prepare the drugs 'til he gets the script, and that can't be done 'til the consent form is signed. We arrived at 9.30 am for a 9.45 appointment, saw the doc over 1 hour late and didn't get the Sutent 'til 5pm!
I'm becoming a proper Mrs. Angry, not with the staff but with the system (and probably the disease too). We're doing our best to be positive but when you think your days are numbered you don't want to be spending too many like that.
The black humour in these situations is quite awful too. As we were waiting to make the next appointment, Tony noticed a calendar on top of the receptionist's pc. He thought it said "Euthanasia" and nudged me thinking it rather inappropiate. In fact, it said "Enthusiasm" and was a recommendation to staff, not patients!
I'm going to try & post our story on my profile but have to admit I haven't quite got to grips with this yet.
Gill, its early days yet so give yourself time to "get to grips" with the whole issue. I can honestly say even now myself and Linda talk and we still havnt taken in or even properly accepted everything. Sometimes you just go through the motions.and the rest comes later.
Not too much planned for today, Linda has taken Kate to school whilst I have a dog at my feet and a cat crawling all over the keyboard. It doesnt look as sunny today but its still early so who knows. Linda redressed the wound last night as it r eally itched to the point it was driving me to distraction and it does feel a bit better this morning. No long drives today just total rest for me and as for Linda, well no rest for the wicked, bless her.
Hello, Gill, welcome to the world of wait, wait, wait! I hope things go more smoothly for you, though.....and the Sutent is successful too, as it has been for Bob.
Bob, its scorchio here, I just came down, had slept late as I had trouble going off last night and opened the doors and windows downstairs to realise that its as hot out there as in, already! I'm glad you are having a more restful day, as yours yesterday must have tired you quite a bit! love to you all
