[kpParticipant]

Hi Karen

I had my bloods done a week before, but not all results back so I plan to ring on Friday for the rest of them.

So next time he said get them done two weeks before. It is the long wait in clinic I find hard, wondering if the sword of Damocles is going to drop.
The NHS is the best thing we have. Thank you Nye Bevan 🙂  but I suppose it will never have the capacity to meet the demands placed upon it.

I was thinking of going away but haven’t booked anything yet. The weather has been fabulous so I’ve spent as much time outside as I can ( with my Factor 20 and my sun hat).

Best wishes

Karen

 

[tonyfParticipant]

Hi Karen, sorry for interrupting your conversations. Almost from the start of my treatment, 2 plus years ago, I have been having my bloods taken by the nurse at my doctors surgery, about 2 weeks before my clinic appointment.
As I am on the myeloma XI trial I have bloods taken at the clinic before seeing the consultant.
Don’t you just love feeling like a pin cushion!
Odd how treatments vary from area to area.
Regards
Tony F

[PendlevbParticipant]

Hi all! I was diagnosed 7 yrs ago with active MM. I had it 1 yr b4 they found it. Unfortunately it damaged my bones and kidneys. I went on the trial treatment for 6 months then had my own stem cells put bk in. I’m plz’d to say I’ve been in Complete remission for 6.5 yrs now and still doin brilliantly. I jst take 1 day at a time. I never read nothing about my condition, I jst could believe what was happening as I was only 39 yrs old.i continue to fight and not give up .. Gud luck to all x

[karrieanneParticipant]

Thanks Karen, I might have a word at the Surgery to see if I too can have mine done 2 weeks before. It seems a bit pointless going to see the Consultant without having had them done. You’re so right, the NHS is most definitely one of the best things this country has. I wonder why you have such a long wait though, I’ll have to wait till my appointment to see if I too have to wait that long.

Thanks Tony, you’re not interrupting our conversation, you’re joining us – we’re all pleased to have any advice, your input is appreciated. It seems the norm for bloods to be done beforehand, being a pincushion is just one of those things!

Hi Val, nice of you to join us. So young to be diagnosed and to have treatment. I’m so glad you’re in complete remission, well done. I hope you stay well and keep fighting.

Thanks Karen and Tony, enjoy this good weather while it lasts and stay well.

Karen

[HarmonyParticipant]

Hi KP,

I just wanted to say that I know exactly how you feel. I was diagnosed with Asymptomatic MM 8 months ago and I still haven’t fully accepted the diagnosis. I see my consultant every 4 months and this sounds pathetic but I actually dress up and put make up on to prove that she can’t possibly be right because I’m so ‘normal’ healthy and well – how sad is that? I think that that’s where the confusion lies – how is it possible to have cancer when you feel so well? I am a reasonably fit 41 year old mother of 2 young children and I keep thinking that I just want to be like everybody else not walking around with this grenade hanging over my head. Recently, I’ve begun to achieve a feeling of inner peace and calm and I suppose that this has happened because I’m taking real joy in feeling healthy and doing simple things – like recently organising an enjoyable first holy communion gathering for my 7 year old son. Sounds a bit corny really but I suppose I’m beginning to appreciate the beauty to be found in every day experiences. The truth is that nobody knows what’s around the corner and we’re no different – the sudden death of Bob Crowe a few months ago really illustrated that. I do get my low points but then reality hits me in the face and I pull myself up again – there’s no point in wasting precious time being anxious while we’re smouldering – this is life at its best for us. I didn’t want to get out of bed the other morning but my kids started demanding breakfast so I had to pull myself up and continue. Cancer doesn’t stop the linen basket from filling up or the grocery shopping from needing to be done.
This website has helped me enormously but I stopped using it a few weeks ago because, to be honest, at times I need to duck my head in the sand and pretend that I’m still non-cancerous me. That’s the thing really, life will never entirely be the same because no matter how hard I laugh or how much I smile, I carry an inner layer of sadness that can never disappear but I’m learning to push it into a deep box in the centre of my soul and to cover it up with fun and love and happy things. You will find the inner peace and calm but it’s a personal quest. I went to counselling sessions for a while but to be honest I had to stop because there were 2 main issues for me- the first was that the room was in the Oncology dept which meant that I had to go there too often. The second was that I got tired of talking about this disease which will always be with me.Talking about it wasn’t going to make it go away. As you can see, I’m still a mass of contradictions!! Anyway, enough of my rambling. Take care.x

[kpParticipant]

Hi Chrissie

What you have said resonates with me, and I suspect with many of the people using this site.

I haven’t got to the place in my journey where I can get the ” OMG I have cancer” out of my head. I sort of ( silly I know) hope they will tell me there has been a mistake, because although I do get fatigued and have some funny tinglings in my hands and feet, I too feel well generally.

A previous post read ” don’t spoil today worrying about tomorrow” which feels like good advice to me. Just hope I can follow it. Seize the day…..

Keep well all my Forum friends

Kind regards

Karen

[susieParticipant]

Hi All.
I’m having my MRI on Friday. Hope I don’t freak out coz I’m not keen on small spaces. Has anyone had one for lumber area, just wondered if they put you in feet first or head first.?
I had the blood results which showed no osteoparosis, didn’t think it would coz I don’t fit the profile in any way. However, the bloods showed the PP’s are up again at 39. I’m not sure what to do coz there are three separate departments involved ie physio, radiology, and GP’s. I was refered to physio for low back pain and I don’t think it occured to my GP there may be a link with the MGUS. I’m not sure they’re talking to each other. I think I’ll have to wait for the result of the MRI then see if I should be chasing them up. I do wish GP’s were more tuned into Myeloma and its related conditions.
Well thats my rant for today. I hope you all keep well.
Best wishes
susie

[kpParticipant]

Hi Susie

I have only seen MRI on TV and so hesitate to advise.

Hope all goes well for you on Friday, I will be thinking of you.

Let us know how you get on.

Karen

[kpParticipant]

Also Hi to Tony and Val, I have been so happy that my thread has given me the chance to share experiences with so many people. It is a privilege and a pleasure to read about others journeys.

I hate being a pin cushion, I always get a bruise that takes ages to go, but at least they don’t have to try more than once so there is a positive in there 🙂

Best wishes Karen

[SalParticipant]

Hi  Susie,

My husband has an MRI booked for Friday too. He’s had a few now and the first one was when his initial plasmacytoma was spotted – in a kind of “we don’t know what this is but we’re not happy” way. He says he has always been in head first – I’ve just asked him.

The radiographers are used to people being nervous, so do tell them if you feel uneasy and I’m sure they’ll do their best to help you relax. Some invite you to take in a CD you’d like to listen to, but my husband says you wouldn’t hear it as the machine is quite noisy.

We had a few problems with joining up the care last year, when he was under 3 different hospitals. Once he was fully diagnosed, though, the Multi-Disciplinary Team discussed his case and we also were allocated a key worker – the clincial nurse specialist – so we have an initial point of contact for any questions or concerns.

I hope Friday goes well. Try not to think about it too much if you can.

Sarah x

[tonyfParticipant]

All the best with your MRI scans, I fell asleep while I was having mine! Haha
Regards
Tony F

[docmikeParticipant]

Dear Susie,
Ive had several mri s .noisy and cramped .SO put on the earphones ,listen to the canned music .CLOSE YOUR EYES and imagine you are on a beach drinking your favorite cocktail and are indeed falling asleep ,focussing on keeping as still as possible(dead lions;the childrens game?????)
Mike

[susieParticipant]

Hi All
Thank you for your replies. Sure does help having this forum to speak to people in a similar position.
Mike-I Like your idea to think of falling asleep, I could well do with the rest. haha
I believe you said in a post sometime ago that PP’s above 30 required treatment. Does that still depend on bone marrow count, ie; if its below the 10% mark.
Best wishes
susie

[angieevangelouParticipant]

Susie, Ive had a couple of brain thoracic and lumbar mri’s as i have Multiple Sclerosis too…. always go in head first and just zone out and almost fall asleep…is quite warm on the table ! I do often wonder is my mris could show anything to do with Myeloma….I know there is not much communication between different departments at the hospital i go to and feel i have to try and be the communication between all the different doctors/consultants. Does anyone know if MRI can show any myeloma symptoms ? I have one lytic lesion on skull which doctors arent worried about as my ParaProtein is only 5/6…my free light chains are ‘a bit high’ and have very high platelets which resulted in blood clots in my brachial artery in arm a couple of months ago.

Good Luck All
Angelina

[susieParticipant]

Hi All.
Well I’ve had my MRI and it wasn’t half as bad as I thought it was going to be. I did put eye pads on before I went in, feet first, and I could have fallen asleep. They said it would take 10 mins but it was about 30 mins, they kept putting me further in so I hope that doesn’t mean they saw something. The results will take 2-3 days when they will phone me’
Good wishes to you all.
Susie

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