[nickyrParticipant]

When I was diagnosed with MGUS (a sort of pre-curser to myeloma) a few years ago I decided not to tell many people about it (only a few family members and my closest friend).  After all I wasn’t ill and apart from the worry of 6 monthly blood tests there were no symptoms or problems.

However when I was diagnosed with myeloma my mindset was somewhat different.  For a start I was told I would be unable to work for a considerable length of time (my back was broken) so my manager had to be told.  Subsequently my work colleagues became aware (I eventually had to retire) as did my extended family and network of friends.

I decided to be very open about my diagnosis and even to blog about it (amongst other things!).  My rationale was that if my experiences meant that just one person suffering with this awful cancer was helped or reassured by my musings then my openness was worthwhile.

We all suffer differently and there is no right or wrong approach, so only you can decide how you live with this.

Anyway, my thoughts and prayers are with you of course 🙂

[nickyrParticipant]

Hi Jeffery.

 

Sorry for the considerable delay in replying.  I don’t post or visit here as often as I should!  Hope everything is good with you?

 

Yes I lost about 2.5 inches in height and as it stands 4 stone in weight (resulting in a new wardrobe!).

 

The pain in my back is still severe and my mobility is restricted (can’t really walk more than 20 yards or so).

[nickyrParticipant]

8 months post SCT here.

 

My SCT was not a happy experience.  I was in hospital for 4 weeks (3 for the transplant and a further 1 with an infection).  I felt really ill for the duration and for some considerable time after.  Boredom was not really a factor for me as I was so ill I couldn’t really contemplate doing anything other than lying down.

 

But everyone’s experience is different.  I’ve spoken with people who have sailed through SCT with no problems.

 

But (and it’s a big but) it was worth it.  My bloods are where they should be at this stage and although I’m still suffering a great deal of pain due to extensive back surgery (the myeloma resulted in a shattered L3 vertebrae) and partial loss of mobility, at least I’m still here.

 

I was medically retired from work 9 months ago at 51 and that’s just sunk in really.

 

So fingers crossed for you and wishing you all the very best for your SCT.

[nickyrParticipant]

Sorry I’ve not posted here for a while but here’s an update of my situation.

Last December it was discovered that my spine had deteriorated to the point that urgent surgery was required to prevent paralysis.  I had 4 vertebrae fused and plated just before Christmas and spent around a month in hospital.

After 3 months of chemo treatment I suffered a massive pulmonary embolism and was very lucky to have survived.  Needless to say my chemo was stopped (it was thought that the Thalidomide caused the PE) and I had another lengthy stay in hospital.

I kept getting recurring infection and spent most of the first half of this year in hospital.

I finally had my stem cell transplant on 9 July and after another month in hospital I have been home recovering since.

Apart from the ongoing pain in my back (which I’ve been told will take a long time to fully heal) the worse part is the tiredness and fatigue.  I go to bed about 8pm most days and get up at about 11am.

Ongoing treatment wise I get Zometa bone strengthening every 4 weeks and am due back in transplant clinic next month to see where I am (hopefully in remission – fingers crossed).

Thanks for listening and, as ever, stay strong to everyone who is fighting the fight 🙂

[nickyrParticipant]

HI Jeffery

MST stands f0r Morphene Sulphate Tablets.  I can confirm that MST caused me hallucinations.

Nick

[nickyrParticipant]

H

I had my consultation last Thursday and was due to start chemo yesterday.

But on Sunday I had searing back pain and had to be re admitted to hospital.  They did another X-ray and i actually started chemo today.  It’s quite intensive over the next 12 weeks.  I have to have another scan to see what’s causing so much pain and have to stay here until it can be managed.

Gold  luck with your treatment – we’re in it together 🙂

[nickyrParticipant]

thnk you everyone again

I’m in the middle of a week of radiotherapy which has gone well – this morning the pain in my back is much, much better

I meet my Dr and trial nurse next Thursday to discuss my chemo regime.  Can’t say I’m looking forward to chemo – especially over Christmas.

[nickyrParticipant]

thank you everyone

[nickyrParticipant]

thank you both

Susie – my fracture and plasma cytoma is in L3, and I’m being treated at Singleton Hosptal in Swansea.

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