[andygParticipant]

Hi everyone.

First of all I want thank everyone for their good wishes and concern about my recent troubles.

Fortunately the medics worked their magic and I got though it all. I spent some time in ITU/ICU and was sedated on a ventilator whilst they pumped me full of antibiotics and oxygen. It wasn’t a nice experience coming off the sedation I seemed to be in a parallel universe where everything I thought was happening wasn’t real. My head was really messed up. This went on for a couple of weeks and was compounded by the inability to talk. When the tubes were removed from my throat and I could talk again Steph didn’t know what I was talking about as all my recent memories weren’t real. I had lost nearly 4 weeks and my brain had made up it’s own memories lots of which weren’t nice. I did think I would need some counselling to get over it but talking most of it through with Steph did the trick though I didn’t tell her everything.

Anyway that’s all in the past now. I’m feeling a lot better now. Physically I’m still struggling I thought once I could get out of my hospital bed and walk a bit I’d be soon back to normal. How wrong was I – after lying in a hospital bed for so long and not moving not only affected my leg muscles but every muscle in my body! I couldn’t pick anything up, struggled to move even in bed and got out of breath doing the smallest of things. Scratching my head was a two hand manoeuvre. When I got home I was visited by a Physio Torturer who told me how it was and said even though I was feeling OK it could take up to 4 months for me to recover my strength and mobility such as it was. Of course she left me with a few exercises to do which initially though not hard really tired me out. Getting up and down stairs was just about manageable but required a long rest on the sofa afterwards.

Status today is I’m back on my Pomalidomide though with reduced Dex. As Dex wastes muscles! I feel ok, though beer tastes a bit strange at the moment, I think I’m doing well with my physio and hoping to get my strength back well before 4 months though if it takes 4 months so be it as is often said small steps will gets you there. My head is straight again and I can believe everything I see and do though my memory is a little flaky still.

That’s my little update done lol you can tell it’s my Dex night.

I want to thank you all again for the messages of support for me and especially to Steph both here and on Facebook for what must of been a horrendous time for her. THANK YOU.

Lots of love to you all.

Every day is a gift.

Andy xxx

[davidainsdaleParticipant]

Hi Andy

So glad to hear that you have have pulled through and have a recovery strategy sorted out. It really sounds like you have been through the mill with this one. Hope you are back to full strength soon.

More importantly you have your priorities sorted out ie the beer!!! I discovered Purple Moose brewery in North Wales recently during a trip to Aberdaron. I can thoroughly recommend.

I have a theory that Adnams Broadside kills all known germs – I hope it has the same effect on Myeloma, so I keep drinking it!

All the best

David S

[jeff605Participant]

Hi, Andy, so pleased to hear of your progress, and your recovery from your hospitalisation. I had a similar ” out of it ” session while in I.T.U. following an emergency admission. On recovery, I was about to put pen to paper to write to the newspapers asking why our hospital was being run by a private concern, when I had to revisit the I.T.U. and realised my memories were completely false ! but very real. Even after 18 months it still troubles me, I can clearly remember names, faces, etc. Strange thing, the brain.
Andy, keep up the good work, it’s so frustrating being held back when your mind wants to go and your body won’t, but with your determination and positivity you will get there. Best wishes and speedy progress, Jeff

[finnParticipant]

Hi Andy

Great to hear that you are on the mend. We were very worried, and I kept on checking this discussion forum several times a day to see if you had written anything! If you still feel weak and the drugs are too much, please ask them to give you a break from any treatment. You can always go back on Pomalidomide and Dex when/if you paraprotein levels start to go up. Wishing you a speedy recovery!

[rebeccaRParticipant]

Hi Andy, Great to hear you have survived! I echo Finn’s sentiments as I too and am sure loads of people were checking daily to hear of any snippet of your progress – you’re far too inspirational to lose – and a real stalwart of this forum. Take care

Rebecca

[jane-wrenchParticipant]

HI Andy – thank goodness you are getting back to normal – we missed you!

Jane

[andygParticipant]

Hi All.

Just a little progress report.

I’ve started my next cycle of Pomalidomide cycle 24 I think and tonight is my Dex night 👀 so I may ramble on a bit or a lot. 😊

Ok progress – I’m feeling a lot better eating and drinking is almost back to normal well myeloma normal. I had a major breakthrough and big boost last weekend in that we went out Friday,for dinner, and Saturday,whilst waiting for take away to be ready, to our local and then went out to lunch Sunday. Of course beer was drunk only in moderation of course. 😇 Though my appetite is recovering well my physical side is progressing slower so I am making sure I can keep safe whilst I’m out.

Had a visit from a Physio torturer today and he was surprised how far I’d progressed so now my torture Oops 😉 I mean exercises are going to be revised which I take to mean toughened up but that’s good news I think lol because I want to get back to full strength as quick as possible in case I have anymore medical mishaps.

Jeff you don’t know how much it meant reading your similar “out of it” experience. I don’t know why but just knowing someone had similar experiences makes it easier to accept it. Our ICU run a support group and we’re thinking of going and hopefully meet people who’ve been through the same experience. The thing that gets me is how  real these “memories” are it’s very disconcerting and even now I’m still remembering things that never happened! Some of my “memories ” were/are quite disturbing.

Ok the Dex rambling is coming to a close now  you’ll be glad to know as my iPad has only 4% battery life left.

Every day is a gift.

Andy

 

• This reply was modified 8 years, 5 months ago by  andyg.

[susieParticipant]

Hi Andy

I’m so pleased you are improving so well. Give the memories time I’m sure they will fade. Good luck with the intensive physio.

Best wishes

Susie

[DizzylizParticipant]

Hi Andy

Glad to hear you are getting stronger everyday, as with everyone on this forum
I would look in as much as I could for a snippet of news on you’re hospital stay,
And am glad to see you back writing on the forum. I was keeping kev upto date during his five week stay as he would ask if I’d heard how you were doing? And am pleased to say it’s good news on both counts! 7 weeks on and kevs SCT has worked with no detectable myeloma so the second SCT through a non related donor ( forget what it’s called) is going ahead Christmas!
Pencilled in on the 23rd! No less, he’s slowly getting stronger and fingers crossed its not a long stint and it boosts his first SCT they call it a tandem transplant.
Well Andy sorry to ramble on so pleased for you and Steph you pulled through! And everyday is a gift🎁🍻 love Liz & kev xx stay well.

[HarmonyParticipant]

Hi Andy, one day at a time… Onwards and upwards (to quote Tom). Sending you cyber love and good wishes-carry on fighting the fight.xx

[janwParticipant]

Hi Andy

It’s so good to hear that you are now fit enough to be back on Pomalidamide and that you are making an good steady recovery after your exhausting intensive care treatment in hospital. I can’t imagine just how tough and worrying it must have been for you and your family over the last month. I hope the tough physio treatment manages to regain your fitness over the next few months. The effort will be worthwhile when you are able to regain your strength and ability to undertake your usual daily routine.

I’ve never thought about how the mind can be messed up whilst you are under sedation, but it’s not surprising with all of the various toxic and strong drugs which are used to help recovery. But there again, coping with dex is bad enough when you are on regular treatment. It’s amazing how your mind can’t switch off with dex and lack of sleep is so exhausting. As you say, the whole experience must have been so strange, leaving you with many mixed up thoughts, concerns and worries. I think it’s a great idea to meet up with a support group of people who have experienced similar situations. You will be able to listen, help, support and advise each other on ways forward which is going to be beneficial to both yourself and Steph when you are discussing your strange memories. I wish that I had been given the opportunity of family counselling when I was first diagnosed with myeloma. Coping and dealing individually with a cancer diagnosis is difficult enough, but you also need to consider how the diagnosis and treatment affects your partner/carer, your children and your closest family/friends. We made a lot of mistakes handling the whole situation which could have been avoided with some professional ongoing advice and support.

It must be so encouraging and motivating for you to be able to get out and get back into a more usual routine. I hope you are able to feel a bit better every day.

Jan x

[andygParticipant]

Hi all.

Well I’ll try this again since my original post has disappeared – I blame Dex!

Anyway it was just a little update of how I’m progressing. I’m feeling a lot better now and I’m  almost back to where I was before my extended holiday on the NHS. Physically I’m improving steadily. I had a visit from my Intermediate Care manager today and she couldn’t believe how much improvement I have achieved in just a few weeks. Her four months to get my fitness back is looking well wide of the mark.

Not much else to report really so no Dex ramble tonight.

I hope everything is going well for you all.

Every day is a gift.

Andy xxx

[duskParticipant]

Good Andy to hear that the progress to recovery has been so positive. My memory of having pneumonia last year still remains so I know how tough it can be, even without being in ICU.

Do you know what might have triggered it for you? In my case lung infections are easily triggered by the drug regimes affecting cell counts and being in contact with the general public when out.  Avoiding lung infections is tough if trying to lead a normal life, I’m always amazed at you going overseas  for breaks. Still we have to enjoy life so balance risks.

Keep up the momentum.

Dusk.

 

 

[cygnetParticipant]

Hi Andy

This is very good news  & it’s great to have your contributions back on the forum!

Keep up the positive work recovery/physio wise … & keep counting down to your next holiday 🙂

Love & hugs,

C xx

[HelenParticipant]

Hi Andy
Good to see you back on form again, are you getting out and walking to the pub yet or just rambling round the house? It’s not nice being so poorly but we are so at risk of infections with the dex and the pomalidomide, my neutrophils have been at 1 or less for a year now. I’ve completed a full year on pomalidomide now, started cycle 14 yesterday and I’m still feeling good enough on it, a few uncomfortable niggles which I just have to deal with and still no sense of smell or taste but I’m off to Austria next Thursday for a week, just hope I’ve got the energy to go round all those Christmas markets!
Now no more shocks for Steph, keep away from the bugs!
Love Helen

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