Just Me.

Stereo

Stereo

Well-Known Member
Aug 22, 2011
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Hi everyone,
As some of you may know, I have been fighting cancer for about 5 years.
Last year I had a t-cell transplant that did a fine job and in August last year I was given the all clear.
However in March this year I relapsed and have been going chemotherapy for the last few months.
The latest type of chemo has got me into full remission -which is excellent news. Unfortunately, the type of cancers I have (Non Hogkins Lymphoma and DLBCL - Diffuse Large B Cell Lymphoma) will definitely come back. The only option of trying to cure me is to have a Stem Cell/Bone Marrow transplant.

I came into the Heath Hospital in Cardiff last night to start the transplant procedure - which involves 6 days of chemo to kill off my own bone marrow to make space for the new stuff, and then next Thursday I will have the transplant.

Should all go well I may be able to come home on Christmas Eve - which I would love as I have an 8 year old little girl. Any infections or side effects will delay my homecoming.

It's a scary time for myself and my family as you can imagine. The doctors have told me it will keep me out of work for up to a year. Coming on the back of hardly any work for the last 18 months - due to treatment and Covid completely wiping out the industry I work in (live events) the financial implications have been fairly devastating. I don't know how I'll make it through this next year really. There are benefits available but they are a drop in the ocean compared to my outgoings. All this just adds to the stress of what's happening healthwise.

I'm fairly positive about the treatment and have already been told of some great responses to it by the nurses here. I'm basically in isolation in my room with no visitors allowed for obvious reasons, so it's a tough time.

Apologies for mentioning this, but a friend of mine has set up a Go Fund Me page to raise funds to help me and my family through the next section of this life experience. If any of you find you may want to help at all, here's the link :
https://gofund.me/f024ba43

Again, sorry for pushing this here - I hope nobody is offended by it.

Cheers.
 
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Firstly I'm sorry, I didn't know of your condition . To have it it diagnosed is scary enough without the extra worry of your finances which obviously has increased your and your families burden but by the sounds of it you have good friends and family so they can and will help and support you.
I had cancer last year which was removed just before Christmas so as they say timings everything (not) and for me so far so good, reading your post and what you have to undertake and I'm sure you'll have the same positive outcome .Its easy for me to post this but at the moment your health is should be your primary concern so added stress won't help you so try to break the next few months into stages ,of having the treatment, getting home for Xmas & recovering .There is professional help out there and I'm sure you've looked into it but charities such as Macmillan , Marie Curie can help . I'm afraid I can't offer financial advice other than can you try to have any of your commitments deferred for a few months , Citizens advice could help you there .
Chin up , try and take the positives because there a many and all the best for you and yours
 
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My thoughts are with you and your family. I hope the transplant procedure is successful and that you will be able to be at home over Christmas. So keep strong. Maybe the Swans will go on an unbeaten run through till Christmas which will cheer us all up!
 
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So sorry to hear about your ongoing issues. To have financial stress on top of your health worries is incredibly unfair. Hopefully your treatment will be successful (and the Go Fund Me) and your family can have a great Christmas and beyond. Best wishes going forward.
 
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I've been diagnosed with Indolent CLL in August - which is incurable but is making leaps and bounds in being treatable - on watch and wait at the moment. Luckily I'm up in age and don't have the financial stress you do - but as you know - staying positive is essential though difficult. Good luck with the treatment and I hope we can share stories for years to come.
 
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Right Mono, I need you to dig in and fight hard. You need to be ready for when the Bluebirds take revenge for the drubbing your boys gave us earlier this year.
But seriously fella, please remember that there's a good chance that anyone reading this thread will be Welsh and that they will all be in your corner and willing you on.
Sincere best wishes for a successful procedure followed by a quick recovery.
 
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swantastic said:
How you feeling now it's done ?
Or to soon to tell ?
Click to expand...
Well the cells went in yesterday with no issue - it's easy - you just lie there whilst the bag of cells drip into you via a Hickman line that I have in my chest. There were 2 bags of the cells and it took about 1 hour for the whole process.
Today, I'm feeling a little rough but that's to be expected, and I will get worse for a few days yet as my body starts to respond. There are a lot of nasty side effects that can happen including my body completely rejecting the cells. A big concern is GvHD (Graft versus Host Disease) where the body rejects the cells partially. That can be something as simple as a rash or at worst life limiting. So they have to give me lots of drugs to try to fight that and help my body cope with whats happening.
Mucositis is a common side effect - where the mouth and pipe all the way down get lots and lots of ulcers. This happens because the treatment causes the tongue and wind pipe etc to lose its lining. So earlier today the tried to put a tube up my nose and down my throat to feed me (NG tube) should I develop mucositis. Even though I don't have mucositis at the moment, the tube cannot be installed once it has appeared. The attempt this morning failed as the tube got stuck in some phlegm just before completion. It was a horrid experience. Head back whilst one nurse starts to push this thin tube up a nostril and immediately your eyes start streaming. You feel it go down the back of your throat and further down. Whilst this is happening, another nurse has a bottle of water with a straw in it which you have to constantly suck on to make you swallow, as swallowing helps move the tube along. It really is an unpleasant experience and I have to go through it again in a bit as it needs to be done today really.
 
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