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AMA
Original poster

I have incurable cancer, ask away.

43 replies

Itsallabout · 14/07/2018 11:13

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.

OP posts:
SarcasticFringehead · 14/07/2018 11:21

I'm so sorry for your situation.

I assume you have researched everything? What do you think about people who ask if you have heard of using marijuana to cure you, or changing your diet?

NicoAndTheNiners · 14/07/2018 11:37

Are you still having treatment?

Do you have kids and if so how old are they?

Are you able to work still, do you feel poorly?

[Thanks]

Original poster
Itsallabout · 14/07/2018 11:57

Sarcastic - I research frequently into new treatment and updates on medications. I try not let it consume too much of my time because it can become quite an obsessive behaviour. I try not to let my health control everything I do or define who I am.
People who believe that cannibis oil can cure cancer or certain diets can also cure fall into two categories I think. They are either extreme anti vacs or anti pharmaceutical so believe I am purposely not being cured . The other people are a little naive and desperately want to give me hope and make me feel better. I believe there is some truth to both diet and cannibis having a place for cancer patients.

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Leesa65 · 14/07/2018 12:02

No questions but good to hear you are in remission

I had skin cancer 11 years ago (Not sure how as I have used a sunbed once in my life and no sun worshipper) but they got to it in time, just about.
I never had to have Chemo or any of that that you have had to endure.

Best of luck to you OP

Original poster
Itsallabout · 14/07/2018 12:04

Nico
I never stopped having some form of treatment. At present I am not having chemo but I have 12 weekly infusions to help with strengthening my bones. I also take quite a few other medications for other things that cancer /treatments damaged.
I have one daughter who is almost 12 now.
No I do not work but I would like to again. It is difficult because I was left with severe nerve damage from a trial drugs so my mobility is affected and I get fatigued. I will try work again, it is what I want so am focusing on what skills I have and how to use them.

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Original poster
Itsallabout · 14/07/2018 12:08

Leesa Thank you for your kind words. I am so glad that you are Ok now.
I live in a country where skin cancer is very common and skin checks are part of life. The Dr's say that skin cancer can just happen sometimes or if you were exposed to the sun and got sunburn as a child.

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Leesa65 · 14/07/2018 12:22

Thank You, Itsallabout .

It was on my nose and I had a skin graft afterwards but its highly noticable (different skin tone). However, I am getting pretty good with thicker concealers, then my foundation goes on, thicker than I like but it covers it.

nevermindthebollox · 14/07/2018 13:19

I could have written your post, but I'm very fortunate that I am not in relapse. I was diagnosed with multiple myeloma nearly 10 years ago, I relapsed just 15 months after my first stem cell transplant (autogulous) but had a second transplant which has held me in remission for 6 years. Is a second stem cell transplant an option for you? I wish you all the best, it's a very tough card to be dealt Thanks

Anotherdayanotherdollar · 14/07/2018 13:49

Sorry to hear that you are unwell.
How does it affect your day to day living? Are you in a lot of pain?

Original poster
Itsallabout · 15/07/2018 06:15

nevermind
I too have MM ( I feel like giving you a fist bump but realise that isn't at all mature or cool).
It is a tough road at times isn't it ? I am so happy to hear that you are doing well at the moment. I had an auto stem cell transplant in 2012 and I had complications but a second might go ahead in the future especially because I have collected stem cells on ice. At this point the Dr's are watching and waiting before starting further treatment. I am not in the UK.
Good luck to you and thank you for taking the time to share a little of your story with me.

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Original poster
Itsallabout · 15/07/2018 06:25

Anotherday
I think what surprised me most about having cancer and going through treatment is how much it can affect you after all the treatment stops. I have been left with many more ailments than I started with.
My life has changed completely although not all of it is bad, it is just different. I am in pain from nerve damage, I get tired easily and my mobility is affected.
But I also appreciate the small things more, I notice my surroundings more and I have a more couldn't careless attitude. I don't feel sorry for myself and I refuse to let it all control my life.

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Eminado · 15/07/2018 06:28

I wish you all the best and improved health OP.

My question is:
What does the cancer pain feel like?

How were you diagnosed?

Flowers
IsBrexitOverYet · 15/07/2018 06:30

❤️

Original poster
Itsallabout · 15/07/2018 06:48

Eminado
Thank you
I suppose what type of pain you have depends on what type of cancer you have. I have neuropathy pain in my legs and feet which is like a burning, stabbing and restless leg pain. I also get bone pain that feels a little like toothache in your bone.

I was diagnosed by chance. I had surgery for an unrelated thing and recovery was slow. I saw a GP who said I was a little anemic and as a female of child bearing years it was nothing to worry about. I then saw another GP for a prescription who decided to repeat the blood test. It came back normal but 3 months later the GP wrote to me asking me to go back for another blood test ( quite normal here for Gp's to follow up routine blood tests). Had another test and still slightly anemic so GP decided to run a few other extra blood tests. Results showed a raise in protein and they thought it might be something called MGUS. Saw a haematologist who told me they were 99% certain I actually had plasma cell cancer. Went to hospital a few days later for a bone marrow biopsy and scans , I was formally diagnosed and staged not long afterwards.

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LunaTheCat · 15/07/2018 06:53

You sound very courageous As a HCP can you tell me the helpful and unhelpful things medical staff have said to you.
Very best wishes 🌻

Original poster
Itsallabout · 15/07/2018 06:53

Thanks Brexit
I don't know how to do hearts so have some Cake instead

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Whyiseveryonesoangry · 15/07/2018 06:55

So sorry for your situation. My friend has just been told she has weeks to live, after fighting for five years. She just wants to spend time with her family, her children are around the same age as yours.
What do you like your friends saying to you, and what do you absolutely hate?

Original poster
Itsallabout · 15/07/2018 07:37

Luna
Great question.
What I appreciated from HCPs was honestly, empathy, trust and efficiency. I kind word or a smile or a hand on my arm went such a long way to building a trusting relationship. I also liked people following through when they said they would do something.

I have spent time in a lot of clinics and wards, in day surgery, in specialist xray suites, ER, Oncology, Cardiology, Renal so understand how busy everyone is so a HCP asking if Im ok or making conversation means a lot to me. I like my questiins answered as honestly as possible and I like being listened to ( especially when it relates to my body). I think one of the worse things from having cancer is the feeling of losing control and losing your ability to make choices.

A few things that stick in my mind was when a HCP talked over me ( I was in a wheelchair) to my husband and asked him questiins instead of me.
Another was when a ward HCP had a tantrum on me and made me cry because I buzzed her 3 times in quick succession. I will always remember her and how she made me feel when I was at my most vunerable.

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Original poster
Itsallabout · 15/07/2018 08:12

why
I am so sorry about your friend, I truly am and sometimes there are just no words to make a situation easier or better.

Personally, I would find it difficult hearing about staying positive, about trying a 'miracle cure, about great Aunt Maud's second cousin who had that kind of cancer and who is ok now. I don't like people looking at me with pity or shock.

I also find it difficult having to navigate and take on other peoples grief and emotions.

I would want to hear about normal every day things. I would like some normality, kindness, to have someone hold my hand, to talk about our friendship and being reminded about the things/adventures/moments I might have forgotten. To laugh and for people to be themselves around me.

I might want to talk about my fears or leaving behind my family or even my funeral but these conversations are difficult to have and your friend might not want to discuss any of these things.

I used to think that certain things mattered like doing the big days out and ticking things off the bucket list but in reality what matters are the simple every day things like sitting in the garden feeling the heat on my skin, a warm hand holding mine, someone singing to me, sharing memories or hearing children laughing. To have memories, To be loved and to feel loved is the most important to me.

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Whyiseveryonesoangry · 15/07/2018 10:57

Thank you Itsallabout, that’s really helpful xx

Original poster
Itsallabout · 15/07/2018 13:37

why Glad it was in some way helpful to you. I'm often clumsy with words.

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WhatWouldLeslieKnopeDo · 15/07/2018 15:22

Hi :) I'm in a similar boat, though mine is bowel cancer so quite a different treatment pathway. I'm on palliative chemo at the moment and it's holding steady, but definitely just a temporary fix rather than long term!

I agree with your last paragraph especially. All those simple things mean so much more than big days out.

I don't understand much about blood cancers at all so I will just give you my very best wishes Flowers

Oh, better think of a question...

How are you finding the hot weather? I'm being a total wimp and hiding indoors most of the time Grin

nevermindthebollox · 15/07/2018 22:24

@Itsallabout fist bump away, you don't see/hear of many of us about! Sorry to hear you had complications with the transplant - my first one I sailed through but the second was horrendous but I'm so glad i did it, I've been well for 6 years which is nothing short of a miracle given the state that I was in! But I know that all of the treatments affect people differently so you have to do what's right for you x

Original poster
Itsallabout · 16/07/2018 15:21

@WhatWould
I'm so sorry for you diagnosis and prognosis. It is such a difficult thing to talk about without seeming flippant but I want to say that I understand completely what you are going through. I often say to people that it is what it is and there is nothing we can do to change though.It is as simple as that.

In answer to your question, I live overseas in a fairly hot place so heat is part of everyday life. I suffer for 10 months of the year , I get so unbearable hot.

If you want a friendly ear or ever want to talk then please send me a message.
Take care

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Original poster
Itsallabout · 16/07/2018 15:26

@nevermind

Can I ask how old you were when you were diagnosed? Was your second transplant an auto one too?
I am very wary of a second transplant but know I will go ahead if it is offered because it will be worth it to have more time.

Congratulations on your 6 years of being well. I love hearing that others are doing so well and I genuinely mean that.

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