[JohnoParticipant]

Good Morning
An update!
Went to Southampton General this Tuesday, had blood tests and a bone marrow biopsy. Had the appointment with the consultant, spent a whole hour with him and went through everything with him. We had typed out a list of questions and my wife, a Judith, took notes during the appointment. I am being admitted this Sunday, as long as there is a bed available. We were shown around the ward and there was still building work underway but it looked well underway. The room we looked in had a large TV, DVD player, free WIFI, hopefully I get that one!

On the Sunday they let me settle in the start giving me fluids, on the Monday they administer me with Melphalan, which should only take an hour. They then leave me for a day and then give me back my 2 million of my Stem Cells back. He explained about sickness etc and I should be expected to stay in for 3-4 weeks. Visitors anytime but no children and no one with colds etc.
All much the same as you told me in the posts above really. Looking forward to getting it underway. (Actually correctly once it’s finished!)

As I say there will be WIFI so I will keep you updated.

Thanks John

[JohnoParticipant]

Brilliant answers, just what I was looking for, thanks Carol and Rebecca.
I had a Hickman line fitted but it got infected so our local hospital St Richards removed it and kept me in while they hit me with antibiotics. Tuesday I had another line fitted in Southampton General, then straight up for 5 hours on the harvesting machine and we managed to get just enough stem cells for two transplants. The consultant likes 4 million stem cells, 2 for each transplant.
I have had all the tests, blood, kidney function using nuclear medicine! Pulmonary, heart ultrasonics, so all ready really.
At Southampton they have had problems with building work and flooding but I’m hoping that following next Tuesdays meeting with the specialist I might be in the following week for the transplant, or maybe I should take an overnight bag!
I was just a bit apprehensive wondering what happens next but I think your replies have allayed that apprehension.
Biggest problem I have at the moment is cold hands and feet and feeling like I’m walking on rocks! All this started with fractured vertebrae so I have spent a long time sitting around so my leg muscles have really wasted and I can barely walk even with a frame. Another problem to sort! I am a very positive person so I’m absolutely determined to get through this. By the way I’m 61 and want to get back to work.

Thanks again John

[JohnoParticipant]

I know this subject has been done before but I’m hoping a bit of advice directly related to what I am experiencing will help. I have for some time had really bad tingling, shakes and cold in my hands which stops be writing, doing up buttons etc. Also my feet are the same but are swollen and up my ankles. Also, and I can only put this down to months of sitting around I cannot walk without a Zimmer frame. It feels like I’m walking on painful sponges, if that makes sense. I don’t have any strength in my leg muscles and the muscles look wasted.

I started out on this journey last October with 3 fractured vertebrae hence the sitting round, the back feels a lot better although I am on painkillers, including fentanyl, garbapentin and paracetamol. The doctors have just taken me off of Thalidamide in readiness for further stem cell harvesting next Tuesday and I haven’t had Velcade for 2 weeks tomorrow.
I was hoping that coming off off these would help but not as yet. As a matter of fact my right foot feels so ‘spongy ‘ that I fell yesterday even though I was using the frame.
Any advice or comments would be appreciated. Also feel free to ask any questions. John

[JohnoParticipant]

In the past I have worked in the nuclear industry ( Berkley Power Station ) at the same time as Chenobol happened, the petro chem industry and various other places. Any of these could have been the cause but I will never know. So I just have to look forward to getting rid of it rather than what caused it.
John

[JohnoParticipant]

Eve

The bed is brilliant, brand new, delivered and erected, all free of charge. Doesn't even look like an hospital bed. If I can work out a way to put a photo on I will. I totally agree anything that can make for an easier or more comfortable life I'm all for!

[JohnoParticipant]

Just to add to that because that was actually yesterday evenings update as I messed up!

I am actually at home now and VERY much better. Decent hospital bed, tilt and rise chair, the lot really.

Just another thing I haven't been able to get my socks on by myself for months so I bought an Easy On Sock Aid, brilliant! Well worth the money. I bought direct from their website, cheaper than Amazon or EBay. Costs about £34 but I think worth it.
John x

[JohnoParticipant]

Hi,
Well I have just submitted by Blue Badge application, I can't imagine how it can be refused. But we will see, I will let you know.
John

[JohnoParticipant]

I guess the danger of reading this site is that one can get worried or confused. I have now been admitted to St Richards Hospital, Chichester with severe back pain and was told yesterday that my light chains were, I think this right, LGg Kappa and were 52000. The Doctor wrote this all down for me and it was definetly 52000, considerably higher than the posts above. Not absolutely sure what means but as I'm in the ward I will ask when I see him. Also my kidneys are working perfectly.
John

[JohnoParticipant]

Thanks Eve and Tom, I guess things will work themselves out in time. If the pain gets so bad that I can't move at home then it will be A&A, hopefully not though. Eve I'm not actually doing anything at the moment, can't even lift a cup let alone anything else. I am however trying to walk around the house carefully just to keep myself mobile ish. I think you're right, listen to my body and try to adapt to suit if I can. Things can only get better.
John

[JohnoParticipant]

Eve, thank you very much for your reply. I guess I am being a bit impatient and I need to pace myself as you say. I have however already had a full bone scan, full skeletal x-rays, MRI, bone marrow biopsy (the doctor took extra bone marrow in readiness to join the trial), blood and urine tests. All in less than a week! I think by the way the consultation was going he was assuming that I would agree to the trial. On Friday the team were going to go through all the scans etc to determine my bone problems and inform me on Tuesday. I do have a list I will hand to the doctor at the beginning of the consultation on Tuesday. Soon find out I guess.
Thanks again. John

[JohnoParticipant]

Thanks Eve, will they start the treatment on Tuesday please? I really want to get started as soon as possible. I'm worried sick that I am going to damage my back even more, I'm already on 3 painkillers including morphine.

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