I have incurable cancer, ask away.

[Itsallabout]

I was diagnosed with an incurable cancer 6 years ago. I have had chemo, bone marrow biopsies, had central lines, hickman lines, a stem cell transplant, been on drugs trials and reached a remission for a few years. I am in relapse at the moment.
If you have any questions, I am happy to answer as honestly as I can.

Thanks itsallabout :) it sounds like we are on a similar page. I don't know if you've ever come across it, and might not be your cup of tea, but there's a cancer support thread here too if you ever want to pop in.

I don't envy you in a hot country that must be such a struggle!

@Itsallabout I was very young to be diagnosed, I was 33 and 14 weeks pregnant I couldn't start any treatment because of that reason (we decided to go ahead with the pregnancy). I had steroids (dexamethasone) through the pregnancy and I felt well until I got to about 32 weeks when I started going downhill, I made it to 33 weeks but the pain got to much so I had an emergency c section and started chemo (CDT) the next day! It turns out I had a fractured hip caused by the mm, that was why I was in so much pain.

First stem cell transplant was 4 months later which as I said put me in remission for about 15 months, then I relapsed quite badly with a fracture to my humerus and tibia at the same time, I was a right Old mess! It was decided that another stem cell transplant would be the right course of action (yes this was with my own stem cells again) but I had something called DT-PACE before the transplant on the advice of a prominent world expert in mm. It was absolutely horrendous, as was the second transplant, I was weak, fatigued, sick, and just wanted it all to be over, but I turned a corner and never really looked back.

I feel more or less normal again now, I have some nerve damage to my right hand but nothing I can't live with, and my humerus and tibia are pinned so won't be running marathons any time soon (but I wouldn't have anyway!!) but overall I feel good and grateful to be here! I went back to work about a year ago which I am so grateful for, and that little 33 week baby is 9 in two weeks and I thank my lucky stars everyday that I have been around to see him grow up to the lovely little boy that he is. I really hope that everything works out well for you, as I said before it is a tough card to be dealt but you hear so many positive stories these days which gives me hope for the future ❤️

Hi ^ItsAllAbout*

I have an incurable blood cancer too - but mine is a form of leukaemia (CML) and I am currently stable on treatment, and hope to remain that way, as I know that prognoses can change considerably if the drug regime stops working.

I don’t really have a question - I just wanted to wish you well and that your current relapse can be turned round soon

Thanks for your frankness. My question is what kind of friends/family have been best for you during this, ie what personal qualities did they share?

Thank you for sharing so openly especially about the ways people can help you and what to say.

I'm so sorry to hear of this op

My question is, as you aren't in the UK, do you pay for treatment? How does that all work?

@WhatWould
I have been on the cancer support thread a few times but a long time ago. I am more of a lurker than a participant although I might give it another go.

It is winter here at the moment and only 24c in the day so bloody lovely and cool.

@iVampire
Sorry to hear of your diagnosis and wish you a very long stable phase and much strength on your journey.
Take care

@Cuttingthegrass
No problem. Of course, it depends on the indiviudual on how they deal with things and want to be treated by family, friends and HCPs. Personally, I find humour helps get through it all and I prefer honesty.

Runmummy
We have something similar to the NHS in that there are public hospitals where you can receive mostly free treatment. If you have private health insurance you can choose to be treated privately in a private or public hospital but there will be an excess to pay as well as out of pocket expenses depending on your Specialist Dr.

I was initial seen by a private Dr but we found out that our insurance would not cover full treatment. The Dr also wanted to recommend me for a treatment trail and that was only available to public patients. I kept the same Dr but saw him in a public hospital and was treated in a public hospital.

GP appointments are not free and Medication is not free. Every medicine I needed at home I had/have to pay for even oral chemotherapy. Alot of meds are included on a government approval list so you get them at a reduced rate but nothing is free. At present I spend approx £35 a month for my basic medication but have spent up to £260 a month. Car parking is not free either and costs £15 per visit if over 20 mins.

Torches
The best family and friends are the ones who care, who stick it out with you and the ones who want to help by being whatever or whoever you need them to be.

Some days laughter is needed, some days efficiency and organisation , sometimes love and empathy, sometimes I just want to be left alone.

Family and friends all have very different personalities but it works because I am honest in what I want from them and they never push me into talking or doing something I don't want to. They give me the freedom to make decisions and listen without judging.
Cancer treatment often takes away control and choice.

I think the most important thing for me has been a shared sense of humour and getting through it by making fun of the awful stuff. I love talking about normal every day things and I want my family and friends to share news regardless of what it is. People often hide their problems from me or apologise for complaining. A problem is a problem and I am still the same person I was before my diagnosis so treat me the same.

I love getting a simple text saying hello or asking how my day is. I like receiving postcards or letters in the post or when someone sends me a little treat.

The worse things for me would be someone fussing around me, being highly and continually emotional or feeling I was pushed into trying to feel energetic and happy when I want to be left alone.

I seem to be talking to much on this thread. Apologies

Hello there

You talk away and don't apologise. I've found your insight and honesty refreshing and it will help me enormously. Thank you so much

Itsallabout,thank you for this thread. I have found it very helpful - and touching.

Do you find that you feel distanced from world events, and that your world is now largely a personal one ? I don't know how to put it better.

buckingfrolicks
Apologies for not answering you question sooner.

I think I understand what you are asking but will likely talk a load of bollocks.

Sometimes my life feels suspended and that I am existing but not living a full life. It is hard to make future plans because I don't know what will happen but for me, it is important to still have dreams, wants and wishes that need fulfilling. I give myself targets to reach and when I reach them , I often move the goalposts! Time moves forward but I want it to stand still, I want to see my daughter grow but I don't want her to get older because that means less time to spend with her.

I don't necessarily feel distanced from world events but often I feel an observer to them in that I can be self obsessed with what is happening in my own life sometimes. I have to give myself a head wobble and remember there is a world around me and it doesn't revolve around me. I am interested in people, in friend's lives, in the news and in normal everyday stuff. Cancer and everything it brings doesn't consume me but it can and has in the past.

just wanted to say hello. I had 2 auto transplants one after the other 8 years ago. They’re shit and cancer is shit.

haggis hello
I don't think I would have coped with having 2! But sometimes we just don't have a choice.
Sending you strength and

Thanks, OP, for such an honest thread - sending lots of to you and other sufferers out there: may you have lots and lots more of the little experiences that mean so much.