How do others cope with the uncertainty of a multiple myeloma diagnosis, and how there are long term repercussions? I’m just full of dread and doom about the whole situation and talking face-to-face isnt an option for me, I just feel stupid 
I’m so scared, people saying life for the day etc , just doesn’t work, as I’m no living at all, I live rural, hubby is out at work all day, , I’m so worried about infections, trying to get my house Stem cell transplant ready, scared of infections, sepsi, will I be this vulnerable for whatever time I have left? I’m sorry to come across as a baby, but I’m finding the change from ccarer to uncurable, cancer patient very very hard, can anyone chine me some hope that I can live some sort of normal life, not new normal, just time without being thinking of C or tablets or side effects, please
I’m sorry you’re still in this place @Byrnebaby, but the harsh truth is no-one can take this away from you, which is really the only thing that would make you feel better right now. You have to find your own way to deal with it. You’ve had views and ideas from plenty of the team and members here, but ultimately you’re blocked mentally from moving to a place of acceptance. Only when you’re in that place will you start to see clearly. No-one can predict the future with or without myeloma, so trying to envisage the myriad possibilities of future life is really quite a large waste of energy that you should be putting into healing. The doctors look after your body, you need to look after your mind, there is help out there to do that and I know the team have shared links and advice before. I’m sure they’ll jump on with them again.
You’ve had a ton of stress leading up to and then since your diagnosis- you need to get some counselling. You won’t get what you need from other people’s stories, they are not you. Everyone’s cancer is as different as their perspectives.
Be well xxx
Hello @Byrnebaby, I’m so sorry you’re dealing with this ongoing anxiety. It sounds overwhelming, and it’s clearly exhausting you.
Please talk again to your medical team about how you’re feeling. The level of anxiety you’re experiencing isn’t something you should have to go through without professional support, and there are things they can do to help - whether that’s medication, psychological support, or connecting you with specialist services.
I remember you mentioned you’re in North Wales, and I know I’ve mentioned it before but Maggie’s Centre at Ysbyty Gwynedd in Bangor is absolutely somewhere you should look at contacting. They offer practical and emotional support for anyone affected by cancer, and it’s face-to-face support as well. As you’re in Wales, you can also self-refer to mental health services for free, confidential support for issues like anxiety without seeing a GP.
There’s also a booklet I found recently from Myeloma UK called “The small things that make all the difference” - it’s written by myeloma patients for myeloma patients, full of honest accounts about the emotional side of things and how people have coped. It might help to read experiences from others who’ve felt exactly what you’re feeling now.
Of course, the Blood Cancer UK Support Services team is here for you too, and perhaps it would be helpful to talk to them on the phone in this case? 0808 2080 888 (option 1). I know that when you were initially diagnosed you weren’t keen on the idea, but if you feel able I think it would help.
Take care, I know how much this is affecting you,
Ceri - Blood Cancer UK Support Services
Hiya @Byrnebaby
It sounds like you need some counselling to come to terms with a life changing illness. Talking isn’t silly it’s a way of getting out how you feel. Counsellors don’t judge they listen and give you coping skills.
I was constantly wanting to be safe and we explored why I didn’t feel safe.
I was diagnosed with a form PTSD due to a life changing illness.
You know your body and you will know when you don’t feel well.
I had neutrapenic sepsis and I thought I was nursing a sore throat for a week which I should have reported to my team.
You will find a new normal living with (not dying) your myeloma.
Yes with myeloma your immune system isn’t as strong as it was and you can use covid prevention to help avoid infection.
Me personally I’m still shielding I don’t go anywhere and love being at home. Out of the rat race and doing my own thing.
My friends visit outside and we do FaceTime/wats app
I also do yoga and keep fit via zoom.
You will find a way but until then you really need to talk to a professional
Regarding the transplant
Use a clean towel every day if you feel up to showering
Clean as you normally would or whoever is around
Keep away from coughs and colds etc
I didn’t really change anything at home.
Be careful with pets that they don’t scratch you
Don’t pick up poo
Use gloves in the garden
And just be yourself.
You will be given all the information that you need for going home
@2DB how long have you had this 2DB? How do you shop etc? I will be craving to get out and be some form of me again
Hi
I have been living with myeloma for 9 years in March
I do online shopping. The drivers know I’m vulnerable. I greet them at the window and they unload the crates then stand back by my front gate while I pack.
I use a PRAP my brother designed for me
It stands for Personal risk assessment plan and what I require.
Eg for a hospital app I require to be the first appointment and for the staff to wear masks and I’m kept away from general population. I have never been refused and always accommodated
I’m having a mammogram soon and I have the first app of the day and the ladies will mask up
When I explain what I need I haven’t been refused
The hardest challange was hematology would you believe! I had to have my brothers support to meet with the head of hematology and tell them what I required.
It now works really well.
For treatment I go at the end of the day
I sit in my car while they clean and the nurses wear masks
I probably have more of a life now than I did before myeloma
It sounds like you’re in really tough space right now @Byrnebaby
My condition isn’t Myeloma but Myelofibrosis.
I had a transplant last April.
My immunity hasn’t fully recovered as yet so I have to be really careful what I do and don’t do.
The reality is that catching an infection is a possibility.
The good thing is that Haematology Teams have protocols for all the common infections and will put these into action quickly if need be.
One of Consultants said to me it’s all about balancing risk with living.
So I wear a mask when I go into shops or cafes.
I avoid busy periods.
I’ve been advised against concerts or the cinema and indeed anywhere you are in confined space which limits things.
Fresh air and walking is something that really helps me.
Reading that doesn’t require much brain power and music helps.
I also find if I get others not going through cancer talking it takes you away from the hear and now.
As an example I was down at hospital in Inverness today for an appointment. My wife made a packed lunch.
We went into Maggies. One of the volunteers made us both a coffee and sat with us.
After she got an update about me I asked if she has any holiday plans which led her to telling me about going to America for the football World Cup and the team she follows.
It was a great 10 or 15 minutes not focused on health.
As others said speaking to someone who will listen with judgement could help.
It can be done remotely I’m sure if you ask.
Final thing is don’t be too harsh on yourself. One hour one day at a time is fine.
And it’s okay to have times when its overwhelming 
@2db wow that’s a lot of planning and a lot of safety, do you still see people? I can lose that I need to see my family to make it worthwhile , I need to know I’ll get their healthy hugs and kisses
@DuncanB no more concerts 
I live for concerts with my boys! Had a take that in Manchester booked for June and cancelled as I’ll either be in Manchester having Stem cell transplant or on my 100 days 
will I be able to shop and see family?
Not necessarily no more concerts ever @Byrnebaby but probably until your immunity is back to normal.
I love live music too but have to accept it’s off the radar for now.
Shopping wise take advice from your clinical team.
Also at Day 100 you might not have the energy for shopping.
When I went to Glasgow for my Day 100 review I was absolutely shattered after it. My wife did all the driving on the 500 mile round trip and we spread it over a few days.
Think it will definitely be a case of seeing how you are at that point as planning ahead is tricky for sure
Yes my friends still visit as long as they are illness free.
I have a chair and blankets outside my front window and chat to them through the window
If the weather is good we sit outside a good distance apart.
My adult kids live with me
My brother calls me everyday to make sure I’m ok
My daughter went to see Tom German and took a few videos for me to watch
Unfortunately with myeloma there isn’t a back to normal immune system.
Healthy antibodies are replaced by the myeloma making those healthy antibodies useless.
I’m permanently immunosuppressed from the myeloma and treatment
We are always at risk of infections
@DuncanB 500 miles???om gosh that’s crazy! Are you way way up in Scotland then? We’ve been go onan and would love to get back up there at some point, we are in north wales so very into our walking,
@2DB i thought the infection risk, would eventually lower, Ai has been lying to me!
Yes the infection risk will depend on where your immunity is lying.
You may well bounce back when your myeloma has gone back to sleep after treatment and transplant but there will still be a small risk
I read of many people who go right back to where they were before diagnosis
It really is very individual and myeloma isn’t a one fits all.
There are hundreds of myeloma people living that we never get to hear about via the internet
Hello there @Byrnebaby, I hope you don’t mind me popping in? I see you’re also from North Wales so iawn (that’s sadly about the extent of my Welsh!).
I wonder if I could offer a couple of suggestions that help me? Although I don’t live with myeloma nor those dreadful-sounding treatments, I do live with a type of blood cancer that is chronic and currently has no cure or treatment that can bring about remission. I also lived with PTSD prior to diagnosis with Polycythaemia vera ('PV') so let’s just say I am very familiar with anxiety and how it can seep into everything. It’s vile, isn’t it?!
Don’t know if this sounds familiar to you, but when I got my diagnosis I went through what I now realise was a sort of grief. It was like I was grieving for my pre-cancerous self—of course I had Polycythaemia vera ('PV') before it was found, but sometimes these diagnoses are like bolts of sudden lightning. Something I practiced and might help you now was telling myself well of course I’m going to feel horrible, I’ve got cancer! Lots of swearing too. It really is so rubbish to have cancer, why not let ourselves feel that? I actually sat about and felt sorry for myself and just cried and screamed into pillows as much as I felt like until it gradually faded into something less like grief and more like ugh whatever. I gave my blood cancer a name so I can tell it to eff off and generally berate it, but at least I’m not beating myself up anymore. As for the anxiety, well I think it’s a way our minds and bodies tell us about threats in our lives to make us more alert and defensive, and what could feel more threatening than bloody cancer?! I won’t suggest trying to live in the moment or any of that, but would say perhaps just feel it all right now in any way you want. You deserve to let all this out. Maybe your hubby can take some of the domestic strain off you in some additional ways. I hope it comes to feel easier in time.
Something else that sprang to mind that you may already be doing to make things easier on yourself is having stuff delivered to you. My dad lives in Wales and I asked him which companies deliver. He said Instacart, Ocado and Tesco do deliveries to his neck of the woods, maybe to yours too? I realise these can be luxurious ways to get what we need, but there are often introductory offers and promo discounts on the deliveries, so you could treat yourself at times when you have least energy?
Just wanted to add how helpful it always is to read your advice @2DB, hope you’re doing well. I still mask up a lot of the time too and, cross fingers, still haven’t caught any viral lurgies. I’m really in awe at how you manage so well, thank you for your wisdom!
@2DB thanks for that/ we are currently working on the house to make it safe, we’ve had a lot of condensation and having to re-silicone all the windows, doors, and treat the hall, we are in north wales, and this winter has taken its toll, we have a de-humidifier/air purifier helping us dry it our also a professional carpet cleaner coming in to do the carpets, my house can literally kill me do you do your cleaning or have help?