life after treatment uk

[Nick]

Hi all from Nick

I have been reading with intrest all you posts from follow up clinics to heart and kidney problems and infertility and wanted to post on each and everyone but would have run out of time, so i thought id give you a UK perspective of aftercare and treatment.

As you are aware i had limb salvage surgery and chemo what a night mare that was in 1987 i do believe the limb salvage operation was a waste of time and caused more problems than it cured. I was then followed up every 6 weeks in March 1988 a tumour was found in my right lung lower lobe which was removed followed by 8 months of chemo. Again i was followed up every two months until October 1990 when the tumour returned in my knee again , I was unable to have further treatment due to kidney problems with magnesium and potassium leakage and to be honest i didn't want anymore ( i think the hospital had given up as well and was trusting to luck with me). I went from then to regular follow ups and xrays of my lungs starting three monthly then six monthly followed by yearly after five years, in 2002 they decided they wanted to see every two years,  which is fine by me. But my Oncologist will see me when ever i have a problem , i get a heart scan liver and kidney function tests at every appointment.

Luckily my heart is fine  and my kidneys have fully recovered, from reading your posts i again realise i am a very lucky man.
I may be infertile but darnt have the test as it would seem like closing a chapter , i now I'm a coward lol. But as I'm single at the moment who cares.

If anyone would like to ask my about any aspects of my treatment in the UK please feel free, my e-mail is nickbones@btinternet.com

Thanks

Nick

[Celeste]

  Nick, you are an inspiration.....

[Cari]

I second that Ce!!!!  The guys are lucky to have you as an addition to the "man" side
Did you have pain after your limb salvage?  how bout now?  That is the one thing that baffles me is how I think most if not all of us have pain and I wonder if the docs really understand how severe the pain can be?  Not sure if the UK tries a lot of the same medications or procedures to help with the pain--so thought I would ask   
Glad you are here!
Cari

[Nick]

Cari

Had loads of pain after the limb salvage it was a nine hour operation to replace half my Tibia, and my knee joint with titanium replacement. I couldn't bend my knee beyond 45 degrees, plus i had massive infection due to my chemo and low blood count. Also muscle wastage in my calf and quad muscle didn't help, walking was very restricted due to swelling and to be honest the amputation was a relief ( but I'm not recommending that, mine was forced  upon me due to re-occurrence).

I can still feel pain in my shin that is no longer there 19 years after the operation classic phantom pains lol.

I'm very luck to have an excellent limb centre that fits me with great legs and i walk much further with my false limb than i could after salvage surgery.

Nick

[Cari]

Hey Nick,
Thanks for the information.  Our surgeries sound similar--I had 3 inches above my knee all the way down to my ankle replaced with titanium.  I have worked up to an 80 degree non weight bearing bend (but that has taken me 2 years to get that much)  I can't kneel, squat, crawl skip, run jog, and barely walk hahah  with what I have at this time, not really sure if it will ever get better.  And the pain is intense to put it nicely   I have other names for it but won't say because some may not appreciate it 
  It looks like from your picture that you are a pretty active guy--I am glad you are able to do the things that you want to do and can continue to enjoy LIVING your life!
As for the fertility thought--I hear you on that one too.  Not sure if I will be able to have children and the docs don't know either and like you I am scared to have the test done to know for sure....At this time I am single too so it is easier to keep that as a thought instead of having to "close another chapter" like you said.  One thing I learned from camp though is many people have been told they wouldn't be able to have kids, and as luck has it they have been able to!  So the saying "NEVER SAY NEVER" really means so much more to me now!  I guess there is a possibility for everything! I am glad you are here with us

[Nick]

Yeah they sound very similar surgeries , hope yours does work out though I'm cool about losing my leg now but i would have done anything to keep it at the time. Yeah i am active i swim , run on crutches , cycle and do loads in gym and most of that with out my leg on. In a way getting rid of the problem area just left me with the reaming fit parts that work very well, my left leg has become extremely strong over the years.

Yeah the fertility is a nightmare but until i need to no for sure not going to worry hey I'm only 33 , i think i had a drug called cisplatin ( might be wrong spelling) and a pinky / purple in colour drug which apparently does all the damage.

What is the camp thing you was on about do you guys all get together or something over there

[Cari]

Brian, Mary, Charlene, Rachel and I went to Montana for a Young Adult Survivor Conference at Camp Make a Dream.....It was a blast!  Not only because we were hanging out at camp--but because we were all together!  It wasn't all fun and games--we did a lot of soul searching, but soul searching with a great group of people is a lot more fun than sitting by yourself!
You should fly down for Camp Davis---at Karens house--got vacation time??
Hugs
Cari

[Nick]

Cari

Sounds good, I'm on holiday in the Canary Islands in June, my next leave will be after October 2006. But i love new adventures travelled to the USA twice before Seattle & Houston. My brother also lives in Oklahoma at the moment.

Keep me informed guess it wouldn't be hard to get a flight and come over. Love to hear about other peoples experiences and pass on my experiences back.

Nick

[Arlene]

Hi Nick.My name is Arlene and we are one of a kind. i had the same limb salvage in the left knee with the titanium rod the lenght of my leg. One year later , i had a revision done cuz the rod was to small and it kept knocking around in the leg. How painful. This past year since, Ive bin in pain every day. i remained on crutches for the past year and a half. who was to know that i would need that strentgh to hold myself up. this past April, i had a recurrence in the soft tissue. it was 11 cms.Needless to say, I didn't have a choice but to get my leg amputated. This past week i went for a second surgery because the skin where he cut grew in a dead black so he removed that. Ive been in rehab for a month now. I can walk with crutches(with all that practice) OK. But the worst is the fantum pain. Its a real killer. My leg was taken up to the pelvis. Tuesday, i find out if I have to go thru chemo. Did you? I really  hope not. this will be my 3rd time. This is cancer no#4 for me. I'm still a survivor but a very depressed one. My whole life is changing and its really scary.Please give me some happy advice.
Hi to all my Buddy's in ABC. i need to have some fun big time!!!
Ill be home next Monday. This has been a nightmare.
love ya all, Arlene