[nickyrParticipant]

I started my chemo last Tuesday (18 November).  There was a slight delay as I had to be readmitted to hospital in severe pain on 16 November.  I’m still here and will be for a few more days yet while they get my pain management sorted and get me mobile (I’ve been laid up in bed).

Everything started really well until i got to last Sunday night when I experienced the  worse bout of sickness in my life (think The Exorcist and you’ll get the picture) resulting in me wrenching my back and enormous levels of pain.

Since Monday morning the sickness has stopped (they gave me an IV drug) only to be replaced by awful diarrhoea.

This had put my physio back as I was too weak to stand.  But today with the aid of my zimmer I managed a few steps.

I’ve also had to have my MST changed because I was experiencing hallucinations.

 

[jeff605Participant]

Nick, excuse my ignorance but what’s MST. I ask as my daughter who is recovering from a brain bleed is suffering from seeing people and things, we think this is due to one of the drugs she is on and are trying to work out which one. Hope all progresses well with the mobility, I’m off for a vertobroplasty on my back tomorrow, and am hoping for an improvement in my very limited mobility following this
Best wishes Jeff

[nickyrParticipant]

HI Jeffery

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

Nick

[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 🙂

[jeff605Participant]

Nick, what a struggle you have had! I sympathise as I have endured back problems with two vertebrae more or less disappeared together with 5 1/2″ in height Have you lost any height? I had a vertobroplasty over a year ago which has lessened the pain and I can now walk a few hundred yards – big improvement so hang on in there! I have been very fortunate and have seen a gradual decline in P/ps and am now well down in low single figures, I declined a set for several reasons and luckily the chemo (3 different lots) has given me pretty tolerable side effects. You have had a hard time getting there, long may it continue Jeff
Jeff

[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).

[jeff605Participant]

Hallo Nick, done it again came off this page lost a long script! Try again!
Nick, sorry to hear things haven’t improved much for you. The lack of mobility is so limiting,and constant pain drags you down mentally as well as physically as we both know. I have many of the problems that you have, tiredness and fatigue in particular. I hope things get better for you, it takes a while for any improvements to show, so hang on in there! I was improving, mobility and in fatigue particular, and learning to handle the fatigue better, but 2 1/2 weeks ago started getting a back ache, fairly minor, but it got progressively worse, until I couldn’t stand up or walk without support, and very painful. Contacted my GP, who upped my morphine to double my regular dosage This has helped a bit but still can only just about walk round to look after myself. I am concerned about this, as I have areas of spinal cord compression that are at risk.Shall have to start shouting tomorrow!
Hope all goes well for you, keep me up to date, best wishes for the future Jeff

• This reply was modified 8 years, 9 months ago by  jeff605.

[jeff605Participant]

Quick update :- back now a lot better,after a very difficult MRI scan no evidence of cancer or new damage which was a big relief. I decided to live with a bit of pain and reduced my morphine dosage as the heavy dose the GP recommended wiped me out, sleepy and dreamy all day, so am now seeing how it settles down, if possible will reduce it further. I am managing to take a short walk every day, hopefully will be able to extend this gradually,this is farthest have walked for 2 1/2 years! . Everything else still about the same regarding tiredness etc.Am back on chemo, stopped for a while following tummy upset. So generally on a bit of a physical “up” atm.,mentally not quite as good though. Best wishes to you all

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