[jiffieParticipant]

To stabilise my system they filled me up with fluids which led to my legs, testes & penis swelling up with excess fluids, they are now getting this under control, I won’t get home until they are happy with progress.

On the positive side my bloods are back to near normal with my neutrofils hitting 1.88 a couple of days ago. So the actual SCT is working really well now with the remaining problem being fluid re-tension.

So, I’m hoping to get home next week at some point. I’m feeling pretty good today, just about to have breakfast 🙂

[richfsModerator]

Hi Geoff, it’s great to hear from you!

Sorry to hear about the infection and fluid retention, but I’m so glad that the SCT itself was successful and that your bloods have responded so well, 1.8 for your neutrophils is amazing so soon after it being zero! Hopefully you won’t be prone to infections when you go home from hospital (my neutrophils were about 0.8 when I went home!)

That feeling of looking forward to eating is so good after what your body’s been through.

I hope the swelling goes down quickly, sounds uncomfortable.

Well done for getting through the last couple of weeks, now you can concentrate on getting your strength back. I’m sure your wife will feel nervous of the infection risk once you’re home, but at least we’ve all learnt a lot about avoiding infectious diseases in the last couple of years!

Speak to you soon, take care and enjoy feeling a little bit better each day.

Rich 👍

[jiffieParticipant]

Thanks Rich, truly appreciate it.

[kh0305Moderator]

Hi Geoff,
Glad to hear the SCT is working well and hope the infections/fluid retention improve soon and you are feeling better x

[richfsModerator]

Hi Geoff,

How are you doing mate? Did you get released home last week? Hopefully once you’re back in your own space you’ll be able to rest and recuperate better, none of those constant obs checks and blood tests!

I was surprised how long it took me to get my energy back after the SCT, but each day I felt about half a percent better than the day before! Slow, but steady progress. I hope that the same is true for you, or even faster.

How are your blood levels? They can be rather up-and-down for a few months after treatment, so don’t worry if they’re not always heading in the right direction.

Have you got your appetite back? I longed to eat certain things (I’m vegetarian, so was craving fried tofu!!) but actually found that I couldn’t always finish meals, your gut really takes a battering from the high dose chemotherapy.

Hopefully your fluid retention is sorted and you’re able to get out and about.

Looking forward to hear how you’re doing.

Best wishes,
Rich 👍

[jiffieParticipant]

Hi Rich, thanks for your kind post. I got home on Sunday, they decided I had been stable long enough and that the fluid retention problem was almost completely resolved. The good thing is the actual SCT has worked well above expectation with my counts being almost back to normal, the only thing lagging a bit are my platelets, though I was in today at the day centre in Fife and they were sitting at 60, they were 50 on Sunday, so they are heading in the right direction. All the problems I had were separate to the actual transplant and were caused by getting an infection just at the wrong time. To deal with the infection and the effects of it they filled me up with fluids which spurred off the water retention problem and created skin problems when the swellings reduced. I had no mouth problems at all, except a very small ulcer which disappeared after a day or so.

I actually have had my appetite back for a few weeks now and am literally now wolfing down my food. Strangely my taste went awol on Sunday but is now returning to normal. I though this might have happened at the beginning so it came a little out the blue. I too am a veggie though I’ve decided to eat fish now for the easy protein intake.

I’m still getting a bit fatigued around 4pm but just have a little nap and feel better afterwards. So this week I’m taking it easy resting up and recovering now that I’m home. What a difference your own bed makes, getting some great sleep which is speeding up the healing process.

Again, thanks for your support I really do appreciate it.

• This reply was modified 2 years, 7 months ago by  jiffie.

[mulberryParticipant]

Hi Jiffe
I’m sorry to hear that you have been so poorly,it must have been terrifying. I hope that your recovery is now well on its way and that your myeloma is now inactive and that you have a long period of ‘rwmission’.
Best wishes
Jane.

[richfsModerator]

Hi Geoff,

Great to hear from you last week, and I’m really pleased that you’ve got through the SCT without too many issues (let’s not mention the infection!). You’re doing really well to have a good appetite and only needing a short nap in the afternoon, I’m beginning to wonder if I’m a bit of a lightweight!! 😀

How are you doing this week? Are they keeping a close eye on your blood levels?

I’m sure you’ll continue well with your recovery, I did find that it took a good few months before I had anything like my normal energy levels, but as I said before, could see a small improvement each day.

Best wishes,
Rich 👍

[jiffieParticipant]

Hi Jane, thanks for your kind wishes. Yes it was quite scary, at one point it was a fairly close thing but they managed to stabilise me eventually.

Hi Rich, thanks for your support. Yes I’m still at home, unfortunately last week the problems I had with my rear end developed into something more serious. I ended up going back to the Western General for examination, a surgeon examined it and determined I had an anal fissure, it’s extremely painful and is weeping pus. He is getting me in hopefully next week for a MRI scan to determine what is going on. Following that it may require examination under anaesthetic and possible surgery.

Apart from that the actual transplant went really well and my bloods on Tuesday were almost back to normal, I feel not too bad and am obviously fatigued at times but apart from the fissure issue everything else has gone really well. I haven’t needed any transfusions for over 2 weeks now and the Doctor today said that I won’t now need any in the future.

So once the fissure is sorted I’ll be almost back to normal and hope for a long period of remission.

All the best,

Geoff

• This reply was modified 2 years, 6 months ago by  jiffie.

[mulberryParticipant]

Hi Geoff
Sorry to hear about your anal fissure. My father had one. My father’s heart was too damaged to do surgery under general anesthesia & his hospital weren’t keen on operating but his quality of life improved greatly after it was repaired under local anesthetic. I hope yours is repaired soon, they are extremely painful.
Hopefully you will get to enjoy good health and sunshine soon.
Best wishes, Jane

[jiffieParticipant]

Hi Jane, thanks again for your kind replies. I had either an anal fissure or fistula back in the 1990’s which was fixed through surgery, so it has always been a fear that I would get another at some point. Of course treatments have moved on and new treatments are now available which is encouraging.

I have been using Diltiazem Cream as prescribed by the surgeon a week ago and it is working really well to reduce the pain and seems to be helping it to heal, I was also taking a strong anti-biotic until the end of last week. The volume of discharge has reduced fairly substantially, so the discomfort has also reduced.

I am hopeful that this problem will be resolved within the next few weeks.

Other news is I’m having my Hickman line removed tomorrow at the Victoria Hospital in Kirkcaldy, as long as they have an available bed for the afternoon, as I no longer require any transfusions. This will be a big relief and means I can take a decent bath which will help to ease the fissure problem.

Generally though I am feeling much better physically and mentally and am now looking forward to transforming this skeleton that I have become back to some sort of healthy body! Next will be getting all my inoculations again and then onto bone healing procedures.

[tony642Moderator]

Hi jiffi

I have just read through your latest post, I am really pleased that things seem to be moving in the right direction for you. You can now look forward to better days to come.

Stay strong. Regards Tony

[mulberryParticipant]

I hope that you are home again & much better now Geoff. What a traumatic experience.
Best wishes, Jane.

[jiffieParticipant]

Thanks for your kind wishes Toni, much appreciated.

Hi Jane, thanks again. Yes I am at home and recovering well, today I had my Hickman Line removed, phew what a relief!

Although it has been a traumatic experience the SCT has worked well with my blood counts now at normal levels, so once I get the fissure problem sorted I am looking forward to starting a normal life again and hoping that my remission period is a long one.

I realise I still have a way to go yet with inoculations, bone repair treatments etc, but I am starting to feel positive about the future, in contrast to the low I hit at the early stages of the procedure.

So onwards and upwards as they say 🙂

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