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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

I’m going to die…..

22 replies

Ariadneslostthread · 18/02/2025 21:36

20 yers ago, I contacted TB, but despite repeated pleas and GP VISITS, I was told I was a “whingeing hypochondriac” ( have this in writing) . Eventually I collapsed with advanced pulmonary TB. 19 years ago I was misdiagnosed with MS ( in fact I had a slipped disc). The consultant who diagnosed me is an expert in his field. Despite me having never had MS symptoms, he won’t retract or reconsider his diagnosis. Aged 37, I developed pain so excruciating in my right hip I was forced to use a wheelchair. No doctor would listen to my pleas, I was told the pain was MS. Eventually I saved enough for a private consultation. My right hip was eaten away with TB. My recovery was blighted by bouts of dizziness, falls, pain. Again , I was told MS. 5 years later after extensive research I was able to visit the only uk specialist in Gluten ataxia. I had gluten ataxia. 7 years later, free of gluten I am just learning to walk again. Despite always having smears, last year, I was diagnosed with cervical stage 3 cancer. My “complex medical history”, and “poor immune system” means oncologist ( NHS) would not give me chemo. I got a private 2nd opinion, and would you believe he sided with my oncologist because he’d taught her at med. school. I was treated with radiotherapy. Tumour shrunk 5 cm, at Christmas 24 , no longer reading as cancerous on MRI. Last week, I’m told it’s back. Now Awaiting a pet scan. Last week I cried all week. Yesterday I called a funeral director to ask about cremation for myself, a death doula, and I’ve written a eulogy. My oncologist is unlikely to give me any further treatment. She is brilliant, phenomenal at her work, but has zero bedside manner. When I said “you are going to leave me to die”, she said “we all have to die”. Based on her attitude to me ( no idea why I have a “poor immune system” - work out 5 x a week, no infections 5 years plus, vegan, good healing ) I feel hung out to dry. I don’t want to die. I’m 59, married, no kids, close extended family.. MacMillan suggested contacting PALS about oncologists poor comms and lousy attitude, but I could be dead before they do anything. If I ask for another oncologist, it could be frying pan /fire. My sister won’t believe nothing can be done, but I feel I’m consigned to dying…….i feel alone, helpless, any advice anyone?.

OP posts:
Lyracappul · 18/02/2025 21:42

Clearly you’re a fighter, and have already won many wars. When the results of your Pet scan come back, you’ll know more and ask for all reasonable treatment you can get. Ask about experimental treatments too, or if there are trials for new treatments.. I’m on your side.. I’m praying for strength for you.

Myfluffyblanket · 18/02/2025 21:42

Oh babe ...I'm so sorry.
I cannot think of anything to say but I can hold your hand if you'd like.

TuesdayRubies · 18/02/2025 21:50

OP, I'm so so sorry. This sounds so hard. Regarding your awful oncologist, the only thing I can suggest which might apply pressure could be contacting the press, but you may not have the energy for that. There doesn't seem to be any good reason for her not giving you chemo:

FairyBlueEyes · 18/02/2025 21:56

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

TrainTicket · 18/02/2025 21:59

Why are you considered to have a poor immune system? Did they tell you? Do you take immunosuppressants for any of your conditions?
It makes no sense why they won’t give you the treatment you need.
Im sorry to hear doctors have let you down so badly.

FatLarrysBanned · 18/02/2025 22:04

I don't have any words of advice, I just want you to know this stranger on a screen has read and heard your words and wishes you all the luck and strength in the world for what you have been through and what you are still facing 💐

Sebsaloysius · 18/02/2025 22:12

As the poster above me said, I have no words of advice, but couldn't walk on by without saying a word.

Another stranger thinking of you and hoping, hoping that you can fight this battle too.

Iknowthescore · 18/02/2025 22:24

You have every right to speak to another hospital- the marsden and christie are very good.

In other news look into German new medicine.

lovemetomybones · 18/02/2025 22:28

You are a fighter and a survivor, you never give up and you never accept defeat. It seems impossible but there is so much research into T cells, there must be something, get a second opinion a new oncologist, you are at a point where you have nothing to lose by doing this.

Your strength and tenacity is incredible xx You can fight this, you have proved that by overcoming this very obstacle before xx you are an inspiration xx

Endofyear · 18/02/2025 22:47

I think you should ask for a second opinion. It may be that you have a weakened immune system if you have latent TB but an oncologist can monitor that closely while you're undergoing chemotherapy. Don't give up. Keep pushing for referral to another oncologist.

DeepFatFried · 18/02/2025 22:48

You are your own best advocate, trust yourself!

Research the best place for a second opinion.

In the end… if there is nothing to lose what would you have to lose by trying chemo!

Meanwhile, your account has made me angry and sad in equal measures. It isn’t fair. You have fought back against so much. It isn’t fair.

Sending every possible good vibes for the result of your scan.

78Summer · 18/02/2025 22:59

Sorry to hear this. Could you request to change hospital. We changed my mum’s as were unhappy with her oncologist. So we asked that he refer her to a centre of excellence.

MrsSkylerWhite · 18/02/2025 23:02

Can you raise funds to have a private MRI?

MelainesLaugh · 18/02/2025 23:07

Definitely seek a second opinion

Brainstorm23 · 18/02/2025 23:42

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Reported.

Vinvertebrate · 18/02/2025 23:51

Are you being treated in a tertiary cancer centre OP? Or at a DGH? I would ask to be referred to a specialist centre.

NHS cancer treatment is very protocolised with clear “lines” of treatment for each type/stage. Your case should also be discussed by other oncologists at a MDT meeting. It sounds like you need to push them to ensure that protocol is being followed, and I would also request everything in writing including the decision not to give chemo.

Enigma52 · 19/02/2025 09:58

Get referred to the Christie hospital.
I'm under them for breast cancer and sarcoma. I had a sarcoma removed over a year ago. It's back, bigger and more aggressive. Chemo starts next week. There are 4 approved treatment lines available. They know their stuff. There's always something in the pipeline. Ask to change oncologist.

Fight! ❤️❤️
Thinking of you.

Enigma52 · 19/02/2025 10:01

Vinvertebrate · 18/02/2025 23:51

Are you being treated in a tertiary cancer centre OP? Or at a DGH? I would ask to be referred to a specialist centre.

NHS cancer treatment is very protocolised with clear “lines” of treatment for each type/stage. Your case should also be discussed by other oncologists at a MDT meeting. It sounds like you need to push them to ensure that protocol is being followed, and I would also request everything in writing including the decision not to give chemo.

Yes, all of this exactly.

Enigma52 · 19/02/2025 10:10

Also, what about a total hysterectomy? Then radio or chemo? You are going to have to be your own advocate unfortunately.

JlL2013 · 19/02/2025 14:12

Have you had the internal radiation? , that's supposed to be the best treatment for eradicating CC (disclaimer I was treated over two years ago)

Understand why they won't do a hysterectomy as the op can cause it to spread to other parts of the body if it's not contained in the cervix (apparently)

You've been treated absolutely appallingly by the NHS, definitely push for a 2nd opinion.

FairyBlueEyes · 19/02/2025 14:17

Brainstorm23 · 18/02/2025 23:42

Reported.

Why did you report it? You think if conventional medicine has come to a dead end giving something alternative a try is bad? I said I don’t know if it works but there seems to be plenty of people for who it has.

Maddy70 · 19/02/2025 14:33

In my experience pals act very quickly

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