Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Gamma knife..or decline?

Midnightfish
Posted by

Hi ..i would as an expert if one was available ..

Dont know what to do..i have 2 tumours. One faux and one pons. The 3rd was removed last January..i have had them since treatment for leukaemia in 1976 when i was given cranial radiation at the age of 4..after having chemo from 1973.after over 40 years of medical treatments i have ptsd, and needle phobia.  I am now facing gamma knife on the pons tumour ....question, what would happen if i decline treatment.?.scans with cannulas every 6 months..5 or 6 attempts each time..on my veins,ruined by chemo..no central lines back then. Blood tests for the never ending leukaemia appointments etc.

Carolyn28
Posted by

hi

well

what can I say, you're an epic phenomena

medical science has kept you going which is great but I can see that you're now questioning that

at some point in time, for everyone, it will be possible to be kept alive by advancements in medical sciences and it will be up to us to decide when and how we die, it will be our choice. 

I cannot imagine that day for me personally .

I'm a dreadful procrastinator, my husband told a waiter not to give me a menu, just to bring me something, otherwise we'd be here all night.

I want to live to be 100 years old but I don't want to be decrepit or a burden. 

In my heart I know I'm like a child being told to go to bed, I will always be begging just another 5 minutes. 

As I understand it the cyberknife or gamma knife are effective treatments for a limited time period, someone who has more than 1 year lifespan after can step in and correct this.

The procedure is uncomfortable but not painful, I don't have first hand experience but that's what I've been told.

The aftermath is plagued with lots of sleepless nights due to the steroids and more than a handful of antibiotics to combat infections.

I was reviewing my life just the other night and realised I have not made the most of all the opportunities presented to me, and probably never will and never would have been able to, to be fair to me.

what do I want from life ?  more than I will ever achieve, that is an absolute certainty 

I will be a disappointment to myself of that I have no doubt but will I be a disappointment to others ????? Do I Care ? Should I care ?

have a look at Billy Connelly's the Big Send Off

tell me a bit about what you've done over the last 40 or so years ? It must at least include a trip to Disneyland, which I've so far failed to achieve ...

Carolyn

xxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Midnightfish
Posted by

Hi Carolyn

Thanks for rely..love the answer to the waiter!.

Ok travel ..Florida, New York ,Brazil,Argentina, Russia, Mongolia, Lapland, Sweden, Mongolia New Zealand, south Australia ,Israel,Rome,Venice,France,Poland, Netherlands,Scotland, Wales,.etc

I used to x strich ..designed my own , and learning to make lace..had to stop as sight not wonderful. 

Only 4 dives left to qualify as a scuba diver..had to stop as would be too much pressure on brain tumours.

We adopted our daughter..she is now in care as she hits me around the head when she becomes frustrated.

I work ..part time as ahealth care assistant.

We have lots of pets,1 chameleon,2cats, 4 tarantulas goldfish and 6 bantom chickens.

Love the theatre..used to live in London and saw neary all the shows,plays opera, anything. 

Its the needle phobia which is the worst bit, have tried emla, entanox, 8 week mindfulness course as well as hypnotherapy , if i agree to the gamma knife for this tumour and that would be a cure i would go ahead. But i have a 3rd tumour and am assured i will continue to grow more for the rest of my live,so scans with cannulas every 6 months, and thats just neuro. Plastics, gyne, and haematolgy haven't finished with me yet....life has to have a quality, mine did..i enjoyed the good times.not wanting to give up life, just the medical inteventions.

Chloe x

Carolyn28
Posted by

wow

I'm impressed with the travel ! I haven't done south America at all, and the diving, I was petrified when I first put the mask on and had to hold the instructors hands to actually go under water and I only ever tried it the once.

That's a shame about your daughter, some of our relatives adopted 3 kids and they all turned out to have special needs and were violent to the adoptive parents. Do you still see her? Is there a resolution to her frustration?

We have a pet dragon, a bearded dragon, which is kind of cute and helped me over my phobia of creepy crawlies, I can now pick up hoppers quite confidently but still avoid crickets.

The needles ... I really struggled because my veins are 'shy' and yes that is a real thing. I had a private nurse come to my house and she insisted I have a hot bath and wrap up in a blanket before attempting to find a vein and it did work.

When I started chemo the first nurse found a vein straight away but the second time 4 of them tried and failed and we all agreed a PIC line was essential so that's what we did. Chemo was a breeze after that, I never dreaded that trip to the hospital at all .

For me, if / when it all comes back, I will need a port or something because it is such a stress to find a vein to put a cannula in for the annual scans. 

Is a port an option for you?

Have you looked at Proton Therapy I know one of the breast cancer ladies went to Munich and is still NED two years later. 

https://www.rptc.de/en/the-center/about-us.html

You do sound like you have a lot of living left to do.

hugs

Carolyn

xxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Midnightfish
Posted by

Hi Carolyn 

All fairly recent with our daughter.. she is 10..she has lived with us since she was 8 months old..definatly attatchment and sensory disorder, possible autism, she has been just as violent to the foster carers as to us. We have gone from seeing her 3 times a week to once every school holiday.

Think gamma knife, fantastic, amazing..my tumours are otherwise in operable..proton would still require needles.. but would like a normal life without procedures and hospitals.

Ptsd gives flashbacks and nightmares of brutal treatment in the 1970s..held down for chemo and lumber punctures,  hallucinations when then finally decided to use sedation..guessing at the dose of both chemo and sedation..95th person in England to  have chemotherapy ..held down when they did cut downs when unable to find a vein used to tie my wrists to the cot sides with bandages to keep hands out of the way..all under age of 4. Caught pseudonymous  while i was neutropenic which destroyed my abdominal skin and muscle.

Hickman has been mentioned but a bit overkill as not having chemo.....not sure would help as local anaesthetic is sub cut..rather have the pain..like at the dentist! 

Have sort of ticked off 'bucket list' just Africa  and Antarctica left..Africa is out as need vacations and Antarctica well out of price range.then will have been to all continent's. .did i mention Mongolia as Asia . Life pretty complete.

Also love to horse ride amazing in Mongolia, and Iceland. 

Chloe