[kpParticipant]

Hi Don,

Crumbs, what a time you have been having, hope all goes well with your keyhole surgery on Monday.  You must be feeling quite battered by everything that has been happening to you.

I too love the humour, keep positive, medical science is amazing these days.

Best wishes

Karen

 

[kpParticipant]

Hi Steve,

My GP was great but it is for sure a waiting game as you go through all the tests.
What my GP initially said was that every answer raised another question and this may be where you are in your journey right now.

I wish you well.

( I emailed the webteam about the tradestore advert as it looks to appear on lots of posts…inappropriate but I suppose that’s business)

Kind regards

Karen

[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

[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

[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

[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

[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

 

[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

[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]

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

[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

 

[kpParticipant]

Well, another two hour wait, but another two months now before next monitoring appointment so all good.

Hope you all keep as well as possible

Kind regards

Karen

[kpParticipant]

Hi, I didn’t know anything about this either so looked it up and found this:
A rare form of histiocytosis.

Associated with an abnormal antibody in the blood called a paraprotein.

Lipid levels are normal.

About 50% will have a malignancy of the blood; usually multiple myeloma or leukaemia.

Presents with large flat reddish-yellow plaques over the face, neck, chest, buttocks and in skin folds (such as the armpits and groin).

So you are right, it is definitely linked. The site suggests they should resolve with treatment of the underlying causative condition. If not then surgery or locally destructive modalities??

I don’t know how you ensure you get the best care. All the advice seems to be to get a second opinion if you are concerned. The best monitor might be how your Dad feels after consultations and he can always speak to his GP.
Our NHS is still regarded as the best in the world. An article in the Guardian recently reported
“The NHS has been declared the best healthcare system by an international panel of experts who rated its care superior to countries which spend far more on health.”

Which I hope gives you confidence and helps to allay some of the fears all the negative political spin creates.

One of the words of advice I have read in this forum is to try not to spoil what you have today by worrying about tomorrow, and for some people the Myeloma remains at MGUS or Asymptomatic for years.

I hope your Dad keeps well

 

• This reply was modified 10 years, 5 months ago by  kp.

[kpParticipant]

Hi Susie

I have just got home and read your posts and Jill’s responses. All I can add is that I contact my Consultant through his secretary, this is what he told me to do if I need to advise of any changes /concerns.  So first point of call might be to ring the hospital and ask to speak to the medical secretary for your Consultant, leave a message about recent findings, your concerns and ask for a call back.  Worth a try at least I think.

Jill’s advice to ring the MRI department direct is very sound. When I was referred for an urgent skeletal survey but heard nothing for a week I rang Xray to check they had the referral.  A very nice young lady said ” yes, we have the urgent referral here, it just hasn’t been acted upon yet”  but then proceeded to book me in  for the next day, so could work for you too.

In relation to rant’s, I used to know a young man who set up a webpage and filled it with all the things that exasperated, confused, irritated him etc.  He called it T*** rants. The good thing about it was it often reflected the confusion and frustration we all feel as we try to navigate through, and make sense of this journey through life. I suppose my point is that it is good to share, and so often there are common experiences which by sharing we can help to make sense of for ourselves.

I love the “head is a shed” quote, I am getting so many gems from my Forum Friends to use to describe how I feel about this  smouldering myeloma.

Karen x

(Let us know how you get on)

[kpParticipant]

Oh Susie I am sorry to hear your news.
You are not hogging my topic. I like to think of it as a shared thread which hopefully we will all benefit from. So sending you a virtual hug and a big thank you for sharing your journey with me.

But on a more positive note I think Mike also said that MRI’s are being considered as very helpful in the identification of the progress of the MM so it will be good to have a more in depth answer to some of the questions you must have.

As a newbie who has read quite a lot around the topic but is definitely not an expert, I think they would treat if there is evidence of any damage to bones or organs but if paraprotiens are above 30 then you are definitely into the asymptomatic category.  I hope you will find it helpful to know for sure what has caused the fracture.

Keep me posted as to how you get on,

Best wishes Karen

 

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