[capt-mhParticipant]

Hello community!
I am currently abroad. I work on ships. This last 6 weeks I have done so many scans, blood and urine tests. The Dr here is sending me home while I wait for marrow biopsy results. Then for NHS treatment, in Scotland. They have diagnosed multiple myeloma from blood results primarily, alongside physical symptoms and scans.

Having got a diagnosis while abroad, my GP does not even know yet (they will only talk to me when I’m back next week). I’m worried because I’m walking into my doctor with a pack of results, before any referral or anything. Not the normal way to transition into this.

Does anyone have any suggestions on first steps? I presume I ask my GP for a referral. Then I give the consultant my test results and ask him to get me into treatment asap. I just hope they don’t want to re do the MRI,CT, contrast CT, nuclear gamma and PET scans which will take weeks. I have all the blood and urine analysis in hand. Just waiting for the marrow biopsy results.

Is the GP the right person to talk to about what other help I may need / have available to accommodate me living alone? Is there someone I should be talking to about financial assistance, home modifications IF needed etc?

While I guess I will not be able to work onboard the ship during treatment, I have literally no idea what my next six months looks like. That’s rather disconcerting!

Any first thoughts would be welcome. Thanks

[mulberryParticipant]

Welcome to the forum capt mh.
Diagnosis of myeloma is always traumatic, & life changing, but not to the extent of your experience!
With your test results I suspect that the NHS will quickly take you under it’s wing and get you medical advice & treatment.
If you can, choose to be treated at a regional hospital. Myeloma is a rare disease, a regional hospital will have drs who regularly treat myeloma and therefore are keeping up to date with myeloma research- a fast moving field.

Myeloma tends to progress quite slowly, so hopefully your long term health is not being compromised by your need to get “home” to Scotland before treatment starts, if indeed it needs to start straightaway.
You should have a clinical nurse specialist amongst your team who will be able to point you in the right direction to get advice re benefits or other help you may be entitled to.

With best wishes

[capt-mhParticipant]

Thank you Mulberry.
I live close to the main Edinburgh cancer hospital. I’m guessing that’s where I will be seen.

A compression fracture in a vertebra has delayed my return to the UK but have stabilised that in Spain, while we did all the other tests.

I’ll figure out who my clinical nurse is. Practically, I imagine they are an goldmine of help and information.

Thank you. I really appreciate your comments

[rabbitParticipant]

Capt-mh,

Welcome to the forum.

Among your questions, you asked:
“Is the GP the right person to talk to about what other help I may need / have available to accommodate me living alone? Is there someone I should be talking to about financial assistance, home modifications IF needed etc?”

A good source of information and advice is Macmillan Cancer Support. They are really helpful, whether you want practical info or just someone to talk to.

Rabbit

[gcParticipant]

Hi.
Sorry you have had to join this community but you will get a lot of help here.
I’m almost 100% sure there is a Maggie’s Centre- in Edinburgh- they are usually near or in the grounds of the hospital. I go to the one in Dundee.They are really helpful both with practical and emotional help.
I hope you get home and get the help and treatment you need ASAP.
Take care.

[capt-mhParticipant]

Thank you everyone for your comments. The NHS is working at its best. Having returned to the UK on Monday, I saw my GP on Tuesday and by Thursday had my first consultation at the local treatment hospital. Quite remarkable.

I’ve hooked into the local Maggie’s Centre. There is also a MacMillan cantre at the hospital.

I really did not expect to have hade this progress in the first week. I feel much more settled knowing I’m in the system and the cogs are turning.

Thanks

[gcParticipant]

Hi again
That all sounds really positive and I’m so glad the NHS is proving to be so quick and helpful.
My GP was unfortunately not very helpful but once I was admitted to hospital and the diagnosis was made I cant fault the system.
I’m glad you’ve made contact with the voluntary organisations I find them an added bonus.
This time last year I was struggling big time with a “sore back”. I was eventually admitted to hospital in January and after a scan lystic lesions and compressed fractures were found. Now, nearly a year later I am much improved ….except for now with a cold!!!! Which is driving me nuts.
Anyway I do hope you continue to get the help you need.
Take care.

[capt-mhParticipant]

Thank you everyone for your comments.
Within 72hrs of arriving home from Barcelona I’ve seen both GP and consultant. We’re discussing treatment routes while we wait for the biopsy results (due next week) and expect to start treatment proper in 1st week of January. Astonished how fast! For now I’m going to start with the pre-treatment steroids as a warm up.

Thank you NHS!

Bring on 2024 to get this done…..

Bring on 2025 when life can be re-set somewhat.

THanks

[mulberryParticipant]

I found I “gave up” 12 months to diagnosis & treatment, but since then have had almost another 5 years of good quality life so far (I started 2nd line treatment a few months ago, but I haven’t any physical symptoms of myeloma and the treatment has proved easy to accommodate into life).

It’s good to hear that the much berrated NHS has swung into action so well on your behalf. I think many myeloma patients do experience excellent treatment under the NHS, certainly most patients in my local support group (which involves patients from 6 different hospitals) believe so.

Good luck with your treatment, may your myeloma numbers start going down with minimal side effects.

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