What support is available?

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I am nearly three years in to a diagnosis of incurable and inoperable metastatic myxoid sarcoma in the lymph nodes on my groin. This isn't currently responding to the latest round of chemotherapy that is being tried. The tumours are growing, As time goes on I am getting more and more scared that I am getting to the end of the road. I feel I should be getting more help and support than I am but I don't know what this is or what it should be. When I look at the Macmillan website I see reference to clinical nurse specialists (CNS) and 'Key Workers', the impression is given that there are lots of people there to support you. The reality is, yes, there are specialist NHS nurses in the hospital who will be in the (very) short meetings I have with the consultant, and I can email them with questions. Is this it? or is there some other support from Macmillan nurses who are something different and separate? Is that what there is? I need to have someone I can really trust in respect of my treatment. I am told that the MDT want to take me off my current drug (Trabectadin) but why do they want to do this? Is it based on cost? Is my treatment deemed to be too expensive? I am terrified of being told that I have got to the end of the line with drug treatments and that there are no more options. Over a year ago a nurse told me to 'put my affairs in order' but they won't give me a prognosis with a definite timeline. Maybe that's for the best? Feeling very anxious and confused. Any ideas or suggestions welcome.

eddiel 26 days ago

Hi Ramsbottom, welcome back to the forum. Iam in a similar position to you, terminal cancer, diagnosed 31 months ago, and present treatment is failing, so thought I'd share what support I have,

I know you live in Derbyshire so hopefully one of these is close enough for you

Maggies, Nottingham city hospital

Aurora Wellbeing, Worksop

Weston park cancer charity, Sheffield.

Many hospitals have a Macmillan hub, somewhere you can just drop into for advice.

I have a CNS, as does everyone with a cancer diagnosis, who I can contact weekdays, I have to wait 2 24 hours for a reply, but I can just pop into urology and see her for a quick word.

I have been to them all, and would recommend them to everyone, I am also registered, through my GP, with my local hospice and their palliative care team, this is NOT, end of life care, you get access to all the therapies and support services, including the resident consultant and nurse consultant and counselling

I also,again through my GP, have a district nurse, who I can call anytime,

But my best support is my partner, and the wonderful people on the same journey I have met over the last 2+ years.

I think you answered your own question as to why their taking you off Trabectadin, it's not working against your cancer, so hopefully a different chemotherapy will, like most I take no interest in my "prognosis ", they are little more than a guess, my best wishes to you and your family.

Eddie

Candysmum 25 days ago

Hello Ramsbottom

I don't think I've chatted to you before....welcome!

Can I add something to Eddie's reply?

I don't live in your area, so I can't access some of the support Eddie has mentioned....but there are two local charities offering a befriending service where I live. They are not specifically for cancer patients, so the befrienders may not be knowledgeable about cancer, BUT they offer a listening ear, compassionate friendship and emotional support, which may meet some of your need to feel less 'alone' with your thoughts and uncertainty.

I contacted them after picking up a leaflet in my Gp's surgery. I'm also hoping to volunteer with them too. Maybe there is something like this on offer in your area?

Like Eddie, I haven't asked my oncologist for a prognosis, and don't want one! It has been described by others on here as like living with a 'sell-by date' stamped on your head, which isn't that helpful really! Living with the uncertainty isn't easy, I admit.

Maybe it would be worth raising your concerns, and anxieties with your oncologist at your next appointment. They may not be aware of how worried you are about future treatment possibilities.

sending a virtual 'hug'

Kate

clg03 23 days ago

Hi, Ramsbottom

Different cancer. Diagnosis incurable inoperatble stage 4 May 2019. I asked in that appointment what the prognosis was. I insisted. The consultant, who was horrid, did not want to give me any information. But with many caveats and we don't know and your cancer is a rare subtype etc etc etc, he said 17 months.

Would I ask that question again? I'm not sure. I don't think I will in future. But who knows. That what I wanted to say about your prognosis reflection. At the time, I befriended a lovely woman on here, MummyB, who messaged me to say "Please don't focus on that. I'm still here nine years on." I've seen dear stage 4 friends go very quickly. Others, through treatments, some good fortune in terms of their bodies handling the medication or surgery well, clinical trials coming along at the right time etc etc, do live on. I guess I'm one of those, five and half years on.

But it's incredibly tough, so I wish you courage and all the support you can find. It's definitely out there. My CNS is amazing. Perhaps you can ask yours to meet outside the consulting room? Not for a chat or emotional support, perhaps, but if you have anything specific troubling you. They will at least be able to signpost you to emotional support if you need it. I call the Macmillan helpline regularly. It's open 8am to 8pm and most of those who pick up the phone are amazing. You can pick a more clinical line or an emotional support line. They also offer financial guidance on benefits, pensions, wills...

I will echo what someone said about Maggie's. Though I have not been recently, the people at the one at Barts in London were amazing when all this started.

Very best wishes to you,

clg03

CLG03...