[les24655Participant]

I’ve just been told I have Mysaloma last Thursday, although it was suspected before. It has come as a huge blow. It is terrifying. I was given a whole load of documents. Leaflets sbout the drugs I’m going to have. The Myaloma introduction from Myaloma UK, a hleath diary. They all seem to paint the future really badly. I know it is supposed to be managable but emotionally finding it very difficult. No hope……………. Can anyone help?

[rabbitParticipant]

Hi Les, welcome to the forum.

It is one hell of a shock to get a myeloma diagnosis. Many of us on this forum have been there – the rest are the loved ones of people with myeloma. In short, we have all been there in getting told something traumatic.

It sounds as though you were handed some booklets, were told you had cancer, and then the doctor walked off. Understandable for overstretched staff, but not a great bedside manner.

I was diagnosed at the end of 2022. Had chemo over the first half of 2023. Still in remission. Going on holidays, working, spending time with family. Going to a rock concert in a few days!

I was traumatised too for a few months, then I snapped out of it. Life is for living!

I won’t pretend that it is easy, whether in terms of treatment (most people get some side effects on the way), or psychologically (I still get low at times), but people can live with myeloma for a long, long time.

Happy to explain jargon, planned treatment, your blood test results, etc.

Regards
Rabbit

• This reply was modified 1 month, 1 week ago by  rabbit.
• This reply was modified 1 month, 1 week ago by  rabbit.

[les24655Participant]

Hi Rabbit, thankyou for your reply and encouragement and I will phone you later this week just to talk to someone with hope, not just a iist of awful side effectd!!!!!
To be fair, the consultant who confirmed I had it and what the treatment options are was brilliant, as was her staff. However in the build up they discovered I had a crumbled vertebrae which meant big surgery on my neck, and I’ve been wearing the collar since the date of that surgery – 1st Sept. Although the earlier process people kept saying it might be caused by Myaloma, but no-one said what it was (except google) and whether I had, and never mentioned the word Cancer. The neck problem at that stage was the priority, I guess.
I was fit and active, retired but working part-time. Busy, and the next flat on my back, and 2 months later facing chemo. It has been an awful shock, and my emotions have been terrible. My family – wife and two kids – have been fantastic. It just feels like I’m living in the middle of a shot show (excuse my language). It’s good to be able to scream this stuff off into the ether.
Will phone when I’ve got myself together after all the medical shocks.

Les

[davidainsdaleParticipant]

Hello Les

Sorry to hear that you have been diagnosed with myeloma, something none of us want to hear.

I was diagnosed in 2013 with spinal damage and have had various successful treatments over the years. It can feel like a slog at times but they say that myeloma is a marathon not a sprint.

You may find it helpful to speak with other myeloma patients so it may be worth seeing if there is a local support group near you. Macmillan can also be a useful contact for information and support.

Hope this helps.
David

[les24655Participant]

‘s goimh through the present that is so hard. Have hearf today I start the chemotherepy Thanks Davidm and great to hear the ong term thing is good. Its the present that is so difficult. Just heard I start my chemotherepy next Thursday and it’s all so unknown and frightening – it all seems to be dire warnings of side-effects! Have to go through it, but it is all a struggle. This is on top of the surgery for the crumbled vertebrae in my neck which was only 6 weeks ago, and still wearing this dreadful collar. I’m feeling really sorry for myself!!!!!! And feel pathetic.
Thanks for your support and hope.

Les

[nualaParticipant]

Hi Les, just read your posts and wanted to say it’s not all doom & gloom! I was diagnosed in October 2022 aged 62. I had spine surgery and surgery to fix my broken femur (about 5 weeks in hospital) and all the chemo, radiotherapy etc then a stem cell transplant in spring 2023. I’ve been in remission since February this year and feel really well. I just want to say it’s all doable! Keep your chin up & try to think positively, a myeloma diagnosis isn’t the end of the world.
Best wishes to you

[les24655Participant]

Hi Nuala – many thanks for your reply and support. I konw things are likely to turn out good, but that just feels a long way down the line. I start my chemo next Thursday so am still in early stages. I guess when I get in a rhythm with the chemo I’ll feel better – as long as the many side effects don’t hit too hard. Part of the struggle is the requirement for all the medical staff to tell you about complications even thought most of them are unlikely. I had surgery on a crumbled vertebrae in my neck on the 1st September and am still wearing an Aspen collar from that which feels awful. I think I will feel a bit better after I casn take that off in the next ten days. At the moment it is tears for 5 minutes, then equilibriuam for a few hours, and that is to be expected.
It is great to hear that you are in remission, and hope that continues well into the future and that you can live in all its fullness into the future.
Thankyou
Les

[davidainsdaleParticipant]

Hi Les

Hope your treatment goes well this week.

If you have not already done so, it’s quite a good idea to keep a daily diary of appointments, results, how you are feeling etc.

Side effects quite often come up in conversation. The motto is ` don’t suffer in silence’. Your medical team can alter doses, the dose regimen, suggest alternatives if you have any problems. Most patients I know generally cope well and side effects often diappear after treatment.

There is plenty of help available for myeloma patients but you have to ask.

Hope this helps.

David

[les24655Participant]

Hi David,
Many thanks for your encouragement. I’m sure once I start treatment and get into the rhythm of it things will settle down. I’ve had trouble with sleep and starte to get that under control now – and I will take your advice – get any help available.
Thankyou for your support – this is the toughest time I’ve ever exprienced at a time when I feel at my weakest. Good family and medical support around me – at this moment I’m feeling okay about it – in ten minutes I’ll probably feel terrible!

Les

[rebeccaRParticipant]

Hi Les – As people say this diagnosis is a marathon not a sprint – so take your time to adjust to your new norm as you have that time. There are many treatment options nowadays so the main focus is best on your mental health/strength. Discover your best coping mechanisms, flex the brain muscles to become mindful and being in the present and recognise that worry only empties today of its strength. I had 9 months treatment then Sct and this Xmas will be 12 years totally drug free (no maintenance on offer at the time) and living life as normal. There are so many long remissions out there and so much to be hopeful about. I like to remind myself that I alone am totally in charge of my own emotions – a strong positive mindset will really help along this long and winding road. Take care.
Rebecca

[les24655Participant]

Thanks Rebecca for your encouragement, and you are right – the mental health thing is hardest. I have been very tearful and sometimes find it hard to get a grip of what is happening. At the moment I’m at the stage where every new thing is terrifying, but I’ve managed. I had my first chemotherapy treatment yesterday and even walking into the chemo suite was frightening, not knowing what was going to happen. It went okay, but the sack of drugs I brought home needed sorting, and while I don’t feel I’ve had any major side effects yet, my mood has sunk a bit today. I do look forward to the time beyond treatment. I’m looking forward to Monday when I lose the Aspen collar – it all started with neck surgery on the 1st of September. And it is great to have the encouragement of kind helpful friendly folk here to know there is a future. Thankyou

Les

[davidainsdaleParticipant]

Hi Les

I forget to mention earlier about compliance sheets.These are like a spreadsheet showing which days to take your tablets, appointments etc.

I found them very helpful at first line CTD and second line. Some hospitals give them out, other don’t. It’s worth asking. I made my own for second line DVd but it’s not difficult if you have a family member who is good with IT.

Hope this helps.

David

[les24655Participant]

Hi David – thanks for the heads up. They have never been mentioned to me at all. When I got home with the sack of tablets I created a spreadsheet – not the greatest spreadsheet but it is doing the job – of when to take what tablets ticking off what I have taken and when.. It is working – dunno what I would do withut it. It’s the twice weekly tablets that would otherwise go by the by. Thanks for your care.

Best wishes

Les

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