[paulpixParticipant]

Hey Ros

Sounds like it is the same, funny that I didn’t have a cast though, happily I can say that you do get more used to it, I’m afraid that it can be quite uncomfortable in the heat though as the plastic traps the heat and you sweat quite a bit.
I was able to drive and do most things with no issues at all, putting socks on required some twisting and doing my shoes up could be a royal pain, I learnt to bend at the knees for most things.

I would try to get hold of some fairly thin tops to wear underneath the brace when it is hot to keep the heat down

Paul

[paulpixParticipant]

Hi Karl

I had no side effects to the Zometa at all, I would mention it to the nurses in case they can help with the bone pain

Paul

[paulpixParticipant]

Hi Ros

My fracture was at T6 so it does sound similar but I never had a cast it was a plastic device that was strapped to me

Sound similar?

Paul

[paulpixParticipant]

Hey Ros

Do you know which type of brace you are having? I was diagnosed back in 2016 and was close to suffering spinal chord compression so they put me in a brace to keep the spine straight and to enable the vertebrae to fuse together, I was in the brace for a year all told
I can give you more background etc if it sounds like my brace would be similar to yours but if it is more like Sue’s than my experience would be useless, my brace was more like a corset that was wrapped round me and fixed with velcro

Let me know

Paul

[paulpixParticipant]

Morning

I was on a different line of treatment (DVT) but I also had a change in my eyesight (worse) and required a new prescription, annoyingly this improved again after the treatments had finished and I required yet another prescription

[paulpixParticipant]

Hi Trenchman

I had my SCT back in 2017 and I remember feeling exactly the same, I believe it is entirely normal, first of all on a physical level the drugs really take everything out of you and it can take anything up to 2 years before you start feeling “normal” again, even now I am at the point on a really tired day of thinking “is this still the SCT or am I just really tired today” so it goes on for ages.

On the mental side, the fight against the cancer takes all of your energy and focus, once you have finished with the SCT you no longer have this focus and that can leave you feeling lost and clueless. It does get better it just takes some time, see if you can find something else that you enjoy that you can focus on.

Best of luck to you

Paul

[paulpixParticipant]

Hi Pin45

I can’t speak for your Mum or that particular drug but I can say that I was in a brace for a year and there were times I found that very hard.

I have now been out of the brace for 3 years and am not on any drugs anymore but every now and again I get incredibly anxious and down and there is no obvious reason for it, however, prior to lockdown I was doing much much better and the “up” periods far exceeded the times when I just felt really low and anxious, since lockdown it’s been a completely different story, the loss of “freedoms” that all hark back to the cancer just remind you of the initial feeling of despair you had when you were diagnosed and just when you thought you were over all that it all comes back again.

Without knowing your Mum’s story all I can say is that for me I felt exactly the same when I was in the brace but when it was taken off my quality of life is so good that you wouldn’t even know I had a broken back, everybody is different but it is worthwhile for her to know that other people have been in a similar situation with amazing outcomes and if she can just hold on it will get better for her.

It is extremely hard at the moment with COVID-19 but if she can find a way to keep herself occupied and busy it will help her to stop thinking about the situation so much, she should discuss the loss of taste with her team as they may be able to help with that (no idea how though sorry, and I feel her pain as I have been there as well).

Fingers crossed in a couple of weeks she may be able to either get out a bit or have some people round to alleviate the boredom and for her to feel a bit more “normal”.

I wish her all the very best and do please keep us updated

Big virtual hugs for both of you as that may be the best I can offer

Paul

[paulpixParticipant]

I’m glad to hear other people saying the same thing as me, I’m currently shielding and being careful but I will admit to going on a couple of quiet walks, I stay well away from other people and I don’t touch anything. I can’t see how this is any more dangerous than my family bringing something back into the house with them.

This is for my own mental well being, being cooped up inside for all this time is driving me crazy and the ability just to go for a walk makes that so much better.

Once the restrictions are relaxed I will continue to be careful but I will be seeing my family.

Stay safe everyone

[paulpixParticipant]

Hi Dave,

I do not have the same dilema as I am younger and with no heart problems, I just wanted to reach out and just say that I completely understand your decision, and that in some circumstances you may be safer at home anyway but please bear in mind that contracting COVID-19 is not necessarily the end, there are many surviving the disease (of course not all with your background). I just want you to keep some positivity if you can, the same strength that has got you through Myeloma will stand you in good shape now, and please remember you are not alone.

I hope you don’t take this message as interfering or in the wrong way, I just didn’t want your message to be overlooked on here and for you to be at home not being heard in the noise.

If you don’t mind please accept this as a “virtual” handshake from me sending you best wishes and please keep us updated with how you are doing

Have you received the follow up letter asking you to register online?

All the best

Paul

[paulpixParticipant]

I completely understand that feeling

Do you have any contact with your haematologist or do you have a clinical nurse specialist even better?

[paulpixParticipant]

Hi Allan

I have no experience of the operation but I did have a back brace, I had to wear it for a year but since then I’ve been fine (luckily)

It will depend on where the problem is with your spine as to how it is fitted, but for me I had to lay on my back whilst my wife slid it under me and it was secured at the front with velcro and straps that clipped either over the shoulders or under the armpits, again depending on how it needs to sit on the body. Once it was secured I could sit up and move around with no problems at all.

Hope that makes sense but by all means let me know if you need more info

Best of luck with everything

Paul

[paulpixParticipant]

Hi Peaches
Just wanted to say, please do NOT feel sorry for worrying. The problem with Myeloma is how hard it is to diagnose and in some cases even to find, mine was non-secretory so it doesn’t show up very easily in blood tests making it very hard to diagnose. Luckily I had an MRI and it was discovered.

When you say Doctors, have you spoken to your specialist or is it your GP?

Please stay strong as there is every chance it is nothing to do with Myeloma but the fear and worry are completely understandable. I stress every single day even when there is minimal pain or discomfort.

Any time you need to vent or talk, feel free to come here and do so, we all understand and hopefully we can help in some way

All the best wishes for you

Paul

[paulpixParticipant]

Hi Ian(?)

Best of luck for the transplant, any questions or worries just let us know there are plenty of us who have been through it and can offer support and advice.

There is a great article on the Myeloma website about what to take in with you for the transplant, well worth a read

Paul

[paulpixParticipant]

Morning
I had one of those cards following my stem cell transplant

[paulpixParticipant]

Thanks Julie

It’s good to know that other people have felt the same way, sometimes you feel bad feeling the way you do and it helps to know that I’m not just imagining it.

[Author]

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