On a scale of it will be fine to totally fucked how bad it this?

[fortifiedwithtea]

I am 55 years old. I have been complaining of pain for years. But 18 months ago the pain suddenly got worse as in more widespread. I felt ill. The doctor did some blood tests. Nothing came of it.

I continued as I was until Davina McCall did that programme on the menopause. That’s me I thought. Had another phone gp call. But the go said he wanted to rule out arthritis before recommending HRT.

I delayed the blood test until I could get a blood test done with my daughter. We both have disability so kill 2 birds with one stone.

Daughter’s gp rang her last Monday, And advised her course of treatment. As thursday I rang for my results confident nothing heard meant negative. Well Who ever I spoke to told me apart from low Vit D and pain markers up no problem. Great I thought have my holiday and arrange for HRT appoints when I get back.

However , today is our first full day of our holiday and I got a call from a gp at our surgery.

Things are definitely not fine. Blood test shows a protein which indicates bone cancer. I may have to fly back early. Its really urgent. Doctor thinks I will need a bone marrow biopsy and bone scans.

Oh fuck!

@fortifiedwithtea Just sending some solidarity for a shit time. I hope you can stay in Jersey for a couple of days: even though it will be surreal and probably feel like an out-of-body experience, it might be better for distraction there than being at home while you wait for the biopsy.

and definitely

I just remembered a blood test that showed 'a dangerous level of ...' something which I forget now, and being told they'd send me to a blood specialist to have a look see. It was whilst dealing with terrible anemia, so I assumed it was that. When I called the number they gave me for the appointment they answered 'Oncology' - I literally dropped the phone. I called back, made the appointment, and shook for days. When I saw the doctor, she said that usually results like this meant major infection or cancer. Examined me, redrew bloods, kept saying 'you must feel ill' - nope. Went back for weekly testing and it reduced week on week. Never did figure out what it was, but my doctor later told me he was very concerned, and sure it was the worst kind of news.

All this to say, there is hope that this may turn out to be less horrifying that it sounds today.

Hope everything works out. 💐💐💐

No advice, just

I had a holiday already booked whilst waiting for treatment for cancer. It was surreal, but in a strange way I enjoyed it and it took my mind off things more than it would have done if I’d been worrying about everything at home.

Fingers crossed for you.

Sounds like they’re suspecting multiple myeloma as immunology tests for serum free light chains would take a bit longer and would be reflexed if your lipaemic index was high. That’s how much protein is in your blood. Good that it’s been found and they’re starting treatment. Working in a cancer hospital made me realise just how many people have cancer and actually are cured! I now work on trials and they’re coming up with new things all the time.
Keep us updated op.

What a stressful time OP, I feel really feel for you. If it is myeloma that they are looking at there are lots of treatment options. A close family member has it and is doing well on treatment. Part of the treatment will be to strengthen your bones, so what you're being told about no impact activities at the moment will probably not be the case in the future. Good luck to you

Sending you strength

Sending all positive thoughts your way.Hoping for the absolute best.❤️

It sounds like they are checking for myeloma OP. I've also had a close family member with myeloma, although that was 14 years ago. There are great treatments for it. My family member took thalidomide for it for almost 2 years which kept it at bay and they lived a fairly normal life. There were further treatments once thalidomide no longer worked. Thalidomide works by preventing cells multiplying.

Myeloma obviously isn't great news but it's also not terrible news. Doctors can do so much for it these days. People live for decades with it.

Good luck OP! I will be praying that the doctors have it wrong in your case.

Multiple Myeloma is what my mum had.

Started with back pain and have heard various other MM patients say it started with back pain too.

You definitely don’t want to start treatment with a broken bone, met other patients who did, so take care of yourself just in case.

We thought it was the end of the world all those years ago, and whilst it wasn’t a walk in the park, my mum was around for a lot longer than the doctors expected and made it to all of our weddings and met all the grandchildren, so don’t go writing off your future just yet!
That boat ride can happen once they’ve strengthened your bones (if that’s what is needed).

My mum had thalidomide too, I had to collect it sometimes, that felt scary to me as a young woman, pre-DC. She also had loads of others I can’t remember the names of now.
Ones linked to thalidomide, that often end -omide, plus newer ones ending -umab.

I hope you can enjoy a few more days away before coming home and finding out more.
Maybe sit and listen to the recording with a pen and paper. Make some notes and get some questions written down, they always leave your head once you see the doctor.

Thank you to everyone who has posted well wishes and encouraging stories , it helps a lot

I did have a much longer reply but my ipad froze and I lost what I had written. So tired now, I can’t repeat what I was saying . Very mixed emotions. Its a lovely holiday , I want to make sure Dh and DD2 enjoy it as much as possible . Its idyllic but at times I just want to be home in my own bed.

Try to sleep tea

You can tell your iPad off in the morning.

It is a bugger - you are having a lovely time in a beautiful location and yet you have a worry perched on you, reminding you that back in the real world you have something to take care of.

I used to be numbersstation in another manifestation and was on the nightshift now and again. We held worries so others could rest.

Sounds daft but some said it helped.

Let me hold that worry for you tonight tea. I will hold it and think of you and my nan and her stained teapot and cloud of smoke.

Imagine yourself in your own bed if you can and sleep.

Good night, sleep well 😴

Thinking of you Op, I hope you can enjoy the rest of your holiday and I’m sending you positive thoughts for when you get back.

We held worries so others could rest.
Sounds daft but some said it helped.
Let me hold that worry for you tonight tea. I will hold it and think of you and my nan and her stained teapot and cloud of smoke

^
That’s such a lovely sentiment @SheldonesqueTheBstard

Don’t be telling people I’m nice elizabeth my dear

It ruins the illusion x

I was coming in to say come on over to the night shift, but you beat me to it, @SheldonesqueTheBstard.

We are still around and just getting better and better at worry wrangling, big or small!. No idea why or how it works, but it just does.

But for now you are in excellent hands, @fortifiedwithtea. @SheldonesqueTheBstard is an expert handler.

Hi I’m still on Jersey. Thursday was a very different day than we initially planned. It was also our wedding anniversary, 26 years.

I also have epilepsy, which these days pretty much stays quiet but Thursday it gave me a reminder its still here. Had a very long seizure in the breakfast room. Luckily witnessed by a doctor. Turns out he is on holiday with his son who was obviously also medically trained. Between them they (expertly) got me off the floor and were happy to back my husband up. No hospital today please.

Boat trip man text to say sea was too rough and gave a full refund. DH relieved as he didn’t want to leave me after the breakfast episode.

By noon I had my brilliant idea, let’s go to the zoo. DH , thought I had completely lost my marbles. Fortified are you serious!? Jersey zoo has shopmobility scooter you can hire. I phoned ahead confirmed one was available And it was amazing.

I probably slept last night too. Which was great, meant I enjoyed today as well.

Unfortunately tonight I can’t sleep again. I have checked text , voice mail email .nothing tried to phone surgery from the beach but the signal was bad unable to hear any dialling tone. I need to have a plan and at the moment there isn’t one.

Can I just offer to hold your worry for a wee while so that you can rest? I can do that.

God what a nightmare , it must be so hard to enjoy your holiday when you are scared and worried . I really hope things aren't as bad as they seem now and this is one of those strange anomalies in blood readings . I had a panicking gp ring me up at the start of the pandemic to tell me my anaemia was so bad I needed to go to hospital immediately for a blood transfusion, I was caring for my very disabled daughter 24/7 at the time as I had cancelled all carers coming in to protect her from covid , but just shows you , the test results won't always reflect what's happening . You are on the list for two weeks time, try as best you can to get some pleasure on your holiday , although that's easy to say when I'm not sure in your position . I hope everything will be ok for you

Hi OP

It sounds like multiple myeloma is a possibility to me too.

My Dad was diagnosed in his mid to late 70s but with treatment he lived over 10 years. And he was deemed too old for a stem cell transplant. You are still young.

I know it is scary and upsetting, but MM is quite treatable usually.

Take care.

Ok so I jave been brave enough to listen back to the doctor phone call.

Firstly the doctor had already referred me onto who ever before making the phone call to me. He also said I should hear within a week. Get in contact if nothing hear in a week as something has gone wrong in their system. I have heard nothing so far. We fly home Monday. So I guess Tuesday morning I will be on the phone to find out what the hold up is.

Yes Myeloma is the cancer that is suspected.

My husband missed the first part of the sentence so I don’t know who the doctor has referred me to. It was a tough listen, as my husband was still recording when I broke down crying. I am quite anguished that I have been in pain for sometime and I have felt nobody in the family took me seriously. I’ve had to deal with alot of snide comments. Bone pain is not rolling around the floor sharp pain. Its a dull pain that grinds you down and zaps your strength.

That was brave. I'm glad your getting help and it sounds like you GP is on it and worth thinking about. Having a GP to support you through could be a very good thing.
I hope your holiday is as good as it could be.

My Mum knew when it was bone pain vs anything else pain. She could describe it well but she knew.

She also had a stem cell transplant which worked really well and kept her off treatment for years, then had various other treatments throughout the years. The newer the treatment the fewer the side effects too which might be reassuring to know.

Her best one was Pomalidomide (though she always called is Panolidomide which confused doctors no end!) - just a tablet for 21 days, then 7 days off, like the pill. Hair didn’t fall out, no illness etc. She had steroids weekly, those days were always her best so look out for that if you get on them. Plan fun stuff for those days.

The scooter at the zoo was inspired, well done!

Enjoy the last few days away and hope for news when you get home x

Stay strong. I found the waiting was the worst time. At least when you know what you are dealing with, you can start to process it.