[SalParticipant]

Well done! At least you know for next time that it’s nothing to worry about.

My hubby didn’t have his. They took him to the mobile up-to-the-minute  machine in the car park, and, because of his spinal damage, they couldn’t get him into the position they needed so had to abandon the effort. The older machine  has been fine before, so a bit of a waste of time today?

Hope you can relax a bit this evening.

[kpParticipant]

Hi Susie, so glad to hear MRI scan not as bad as you had feared. Fingers crossed for your results.

Oh Sal, what a waste of your time, you must have felt very frustrated.

Best wishes Karen

 

[susieParticipant]

Hi All,
I had the result of my MRI and its good news. It just showed bad arthritis and several compressed discs as well as the compression fracture. I had convinced myself the MGUS had advanced in view of the increasing paraprotein levels.
So my next monitoring isn’t till next month and I’m going to forget it all till then and hope that the pp’s have gone down.
My best wishes to you all.
Susie

[kpParticipant]

So glad it is good news Susie, fingers crossed all well at your next monitoring. Can they sort out the compressed discs and compression fracture?

Karen

[karrieanneParticipant]

Great news Susie, I hope they can sort out the compressions and help your arthritis. It’s sad isn’t it, I don’t think there’s one of us with just Myeloma, we’ve each other problems that don’t help very much! I was surprised you went in your MRI feet first , never heard of that before!

Enjoy your time before your next appointment, and I hope it all goes well for you.

I mentioned getting my bloods done before my appointment, that was a waste of time, doc said she wouldn’t know what to test it for! Maybe next time when I’ll be able to tell her then. Just have to wait till it’s all done and  presume I’ll get a letter in the mail. It’s not till 22nd so I’ve a few days to wait. Do they let you know para protein levels etc. when letting you know your results? I thought Karen might know, I’m still new to this, almost 4 months and I can’t get it out of my head that word Cancer crops up a dozen times a day into my head and I’m still scared!

i hope everyone is coping okay and improving all the time, be well. Karen xx

 

[teds31Participant]

When I go to see the consultant he gives me a set of blood envelopes with all the info on then 2 weeks before my next appointment I go to the nurse at my GPs and she does the bloods and sends them to the hospital. The GP doesnt know any thing about it. The nurse usually cant understand what its all about and often asks what the LC means (light chains) but the system works. By the way thats Leeds.

[karrieanneParticipant]

Thanks Ted,

I’ll know what to ask for when I’m there.   I realise the doc doesn’t know much about the Myeloma, she just goes by the letter from the Consultant. I only go to my GP for other stuff, like two chest infections in 6 weeks!!

i hope everyone is doing as well as they can be, I’m enjoying this glorious weather we’re having at the moment – no need to go away when the weathers this good. Stay well , Karen

[kpParticipant]

Hi All

I have had a blood giving day today..they took a whole armful!! I have my first appt for the Haemachromatosis on Friday so repeat of all blood tests required and  going for another scan tomorrow. Have to say I find it really hard that since March 2014 I have become this person whose life revolves around hospital appointments and phlebotomy clinics.

When I got to phlebotomy clinic this morning there were 52 people in the queue in front of me…amazing. Mind you they work so hard, I only waited half an hour.

I have my blood forms for my next Myeloma monitoring here Karen. He has asked for a FBC (full blood count) and blood BONE, RP, IFX, SEP if that helps.

Last time I went for bloods a week before but PP’s were still being processed so I rang up a few days later and his secretary gave me the levels over the phone.  He asked me to go two weeks before this time around.

I was given my diagnosis in March Karen and thought I had been coping quite well really but a letter from the hospital with the wrong details on really upset me. Far more than was reasonable. Took me ( and my husband) quite by surprise that I went into meltdown over such a small thing.

Still got my mojo back now. Onwards and upwards.

Keep well everyone

Karen

[karrieanneParticipant]

Well Karen, you’ve had some day – seems like everyone’s after your blood! It is awful finding that the hospital appointments take over your life. I felt like that at the start of this journey, but hopefully after the 22nd it’ll just be 2 monthly. Thank you for the info about the bloods – I’m not surprised they need an armful going by the number of tests they do. I’ll ask for the forms for my following appointment when I’m there.

I’m sorry you have the Haemachromatosis to put up with too, there’s always ‘something else’ isn’t there? Mind you, I think you were lucky only waiting half an hour at the clinic today, that’s an awful lot of folk to be waiting.

do you think you’re coping well Karen? I think I am, and then it’s as if ‘Cancer’ jumps into my head and won’t go away. I feel like there’s a gun at my head sometimes but nobody can see it. I look the same, nothing’s broken no-one knows, (I don’t know) how ill I am – or not. I think something quite simple could cause meltdown, doesn’t it just depend on what you feel like at the time. I’m still coming to terms with it, still confused. Had I stayed in Oz I would have had most of the treatment now but not here, watch and wait.

I did have a good hour today, Jo from Lavender Touch came to give me a massage, now that’s what I call being pampered. Anyway Karen, I’m glad you’re on the ‘up’ again I hope all goes well with your scan. Stay as well as you can be.     Karen

[kpParticipant]

Hi Karen

I don’t really know if I am coping well. It is such a devastating thing to be told you have cancer. I too have the thought pop into my head every day. The Consultant told me I was lucky because I was picked up early through routine screening and he sees people who are symptomatic and with kidney damage etc and in a much worse state than me.

From that perspective I am lucky, but had I not had the routine well woman test I would have been living my life for the next few years, rather than waiting in anticipation of the Myeloma going active.

I know what you mean when you say you don’t know how ill you are. It is such a strange thing this MM as I look really well (I think) and feel OK but I get tired easily so have had to tackle things at a slower pace.

So I am taking the advice I was given early in this thread; enjoying every day and doing all the things I want to do and in between appointments trying not to think  about it.

With the haemachromatosis the treatment is to take blood to reduce the ferritin levels so I expect to be losing more than a whole armful over the next weeks and months. I wonder if that will affect my PP levels? (Can’t help but think of Tony Hancock every time I type that, I love the Blood Donor sketch, so funny).

I also love being pampered and so perhaps a spa day in a couple of months when my appts have settled into a routine will be perfect therapy.

Keep well

Karen

[susieParticipant]

Hi All
Just a thought. Anyone on here living in High Wycombe/receiving treatment at Wycombe Hospital ?
It’s interesting to know what local care is.
Best Wishes to all
Susie

[kpParticipant]

Hi Susie,

I don’t live in your area, but is there a support group near you? Might be how you could talk to other people using the same hospital team.

Karen

[susieParticipant]

Hi Karen
Just thought I’d let you know I’ve been called to hospital early, that is tomorrow. I presume its because my para proteins rose again when GP did bloods for my back. I did ask the secretary but she said she didn’t know ! I presume the consultant will want to do a BMB which I don’t look forward to.
At the moment I’ve got awful sciatica. It started after the MRI, I must have been lying on a nerve. Been to physio but it didn’t help that much.
Anyway wish me luck for tomorrow. Hope your keeping ok
Best wishes to all
susie

[kpParticipant]

Hi Susie,

Definitely wishing you luck for tomorrow. I am sure you are feeling worried about what they have to say. I suppose the “but” is that it is oddly reassuring that behind the scenes the Doctors are working to keep you as well as possible.

I am sorry to hear you have been in pain, sometimes physio seems to make it worse before it gets better. At least that was my experience a few years ago. Hope your sciatic nerve settles soon. Can you take anti inflammatory meds ( ibuprofen?) as I understand sometimes it helps to take them regularly for a few days so the inflammation starts to settle. Probably best to ask the Doctor tomorrow.

Karen

[susieParticipant]

Hi Karen
I saw the consultant yesterday. He wanted to see me early because he had been notified of my back pain and the mri. I had further bloods done (gp’s hadn’t informed him of the 39 pp–charming). Consultant wants to see the mri himself, so he’ll ring me in about 2 weeks and take things from there.
The only thing that’s really bothering me at the moment is this awful sciatic pain. I don’t know whether to put heat or cold on it.
I hope you are doing ok. Take care.
Best wishes to all
susie

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