[andygParticipant]

Hi Vicki & Colin.
Well Colin does seem to like that hospital food. From what I've read about SCTs you do spend you first weeks of "freedom" popping back and forth to hospital so I don't think Colin is unusual in that though his haste to get back was a little to keen. You must have gone through a wide range of emotions today but with that temp he needed to be back in hospital. I really do think carers have the worst of it with this awful disease there just doesn't seem to be any let up for you. Hopefully in a few weeks time you will be able to put this little episode behind you and you'll be able to marvel at Colin's progress.
Wishing you both good times ahead.
Andy xx

[tomParticipant]

Hi Ann and pete

Its not a bother at all.

so here goes,I had my Blast of Chemo a couple of Months prior to my harvest (my consultant sent wrong patiant??) But I went in one Monday Morning and was sent up to X Ray Dept to have my Femoral Line inserted (no pain no discomfort )

the Tues I was up early breakfast then a Transport car takes me to "Seacroft Hospital" in Leeds where they took some bloods to check, about an hour later the Nurse came back and told me Plenty of Cells floating about so I was going to get ready for the machine, I was on the machine for about ?? I think 3 hours (pain free) then was sent back to Scunthorpe General.

I was told that I hade shoved out enough Cells for near two SCT and that I wouldn't need to go back to Leeds (was booked for three days ) My consultant came back to hospital and took the femoral line out and two hours later went Home.so that stay that should have been a four day stay turned out just a two day stay .

How Pete will feel is Fine no pain no discomrt and one route to the road to remission complete

Love Tom "Onwards and Upwards" xx

[tomParticipant]

Hi Vicki & Colin

Well That devil likes hospital food?? or is it a pretty nurse?? Lol
Tell That Colin yes he has had it rougher than I can recall my time but he will get through it, keep the fluid level topped up and all being well it will keep him healthy.
The IV drip will soon have it sorted and soon be home but ask for a few plates of hospital food so as Colin can stil have a Hospital fix for a few days he he..

Love and Hugs
Tom "Onwards and Upwards" xxxx

[VickiParticipant]

Hi all,

Andy, thanks for your support…..how are you doing? Hope they are giving your pps a battering.

Tom, you're right I reckon it is the nurses as they are pandering to his every whim!.

Temperature seems to be more normal, not sure of the cause yet, still waiting for some other bloods. He is pretty fed up, and the pain in his upper arms has not got any better!

Still let's hope today brings an improvement, and less rain but I don't think so. One out of two would be good!

Vicki

[AliParticipant]

Hi Vicki and Colin

Crikey you two, what a worry! Good news that Colins temperature is a little better. They will sort him out. No luck with the rain stopping im afraid so im hoping theres an improvement with Colin. Do they still say the arm pain is due to GCSF?.

Love Ali x

[foxy555Participant]

Vicki

Oh hang in there, I hope it won't be long before Colin comes home to stay!!! You really have been through the mill, so too speak!

Hope Colin is on the mend, keep us posted!

Love Ann and Pete

xx

[bikerchrisParticipant]

Hi Vicky, so sorry to hear about the false start on Tuesday, you must have been so upset having finally got him home! Colins sickness may well have been the temperature – a few months ago my temp suddenly shot up and I was really sick and ended up in the hospital. Definately sounds like withdrawal from the hospital food LOL!

Poor chap really is going through the mill, I did pick up an infection, but almost immediately afer the new cells, so I was having tons of antibiotics in my 3rd week which soon did the trick and got the temp down, but they kept them up for 7 days to be sure.

Touch wood (or bald head!) I have been ok so far – no visitors so far, but I have ventured out, watched by hawk-eye Lena, a few times for fresh air, and drove the car a few yards today before getting stuck in the storm induced traffic jam, then went home!

Regards the arm pain, I put some of this down to the hundreds of blood pressure tests which squeeze pretty hard on my poor thin arms. It has been much better since I have been home, just some shoulder aching which I usually have, so I take a small dose of Oxycontin each day.

I hope Colin gets his good behaviour release very soon, sounds like he is nearly there!

Keep smiling, it must be very tough for you, Lena is desparate to hear that you can both be at home with your comforts around you, it really makes a difference.

Chris and Lena xx

[tomParticipant]

Vicki and Colin

Has Colin still got hnis Line in?? as sometimes that is the cause of infection and High Temp, Hope its all sorted and you both are back at home am sure its bloody hard work for you both so am sending you BOTH some of my Cyber Hugs (((((Hugs)))) (((Hugs)))) and trust me these work 😀

Love and Hugs with the Hugs

Tom "Onwards and Upwards" xxx

[andygParticipant]

Hi Vicki & Colin.
I'm feeling good at the moment which is at odds to what I should be feeling given my situation but hey ho I'm not going to complain – well not too loudly. Get my latest pp results tomorrow at the vampire shop. They'll take the usual armful of blood as well hopefully my neutrophils will have improved a bit. Monday I'm of to see the Prof again to see how the hunt for a donor is progressing and maybe get a time scale for my Allo.
I hope Colin is home again soon and is not lured back to the hospital for some more of that delicious hospital food.
Take care of yourself Vicki as well as you take care of Colin.
It'll soon be all behind you and "normality" will soon be restored.

Love and best wishes
Andy & Steph xxx

[VickiParticipant]

Hi all,

Andy, good luck with your visit to the professor. Really hope you get some good news as you are due some! Tom, thanks for the cyber hugs! That's helped :-). Colin does still have the line in and they did mention that possibility. You are right about the hard work, it's an hour each way to the hospital and with the really heavy rain it's been tough, and for Colin I know he has tried to be positive but a big blow when we had to go back in so soon! Still hopefully they can get to the bottom of these pains in his arms,

Chris/Ali thanks for your posts, they are saying now that they think his arms are over sensitive, but i don't know to what?, I am seeing the SCT nurse or consultant today so that they can explain to me where we are with this…..it's an interesting point you make their chris about the blood pressure testing etc. Colins arms have been so sensitive they are now taking it on his leg! He was low yesterday but seems a bit brighter today, fingers crossed we can get to the bottom of this and move on!

Stay well all,

Vicki

[tomParticipant]

Hi Vicki and Colin

Am pleased the Hugs were good for you both, its not a lot but its good enough to cross the distance we have between us all 😀

I hope all went well today with whoever you ended up seeing and are soon on the way back home Arms sorted or at least an answer to Why.

Love and Hugs to you Both
Tom "Onwards and Upwards" xxx

[bikerchrisParticipant]

HI Vicky,
glad to hear that the hospital are looking into the pains, I got the nurses to measure from my forearms a few times, or swap arms as they always used the right one ('it's what your right arm's for' do you remember that advert!) haha, where was I? Oh yes I was going to say that I was warned that 9 out of 10 patients get an infection, not from other people, but from your own bacteria in the tummy, mouth, line etc, so it's very common.
I hope Colin is better today, and will be home soon (even if by canoe!)
Chris and Lena x

[VickiParticipant]

Hi all,

Chris, you are sounding quote chipper so hope things are on the up for you. I was amazed that you did a bit of driving! Well done, be careful not to over do 🙂

Well with regard to colin, next saga. They are now saying they think the pain he is getting in muscles is a condition called polymyalgia. Apparently his inflammation marker is way up, and consultant has said this is the likely cause. They are starting him on steroids today, which apparently if that's what it is start to react immediately. The mistake I made was googling this condition……we will leave it there! Apparently he could be on these steroids for quite some time, and ironically they can make you more prone to infection! How much more prone can you be than with myeloma! Anyway that's the next course of action.

To make matters worse his neutrophils have dropped back to 0.2, which they tell us is normal, and they are starting the gcsf again, which they did last night! To be honest we are both so flabbergasted with it all that we are just ploughing on like a couple of robots!. Also they apparently have not done an xray on arms and shoulders so I don't know what the xray was before so that still needs to be done. I was a bit feed up yesterday as it does seems they've let this pain this go on for a long time, especially when we both told them he had had v little to no pain with gcsf when mobilising. Anyway, this is another twist and turn…..as long as the myeloma is out of the way that's the first hurdle crossed.

Best wishes to all. I'm conscious I've not been much support to others these last few weeks, but it's just had to be focussed on Colin, and achieving the goal of being out of hospital for more than an hour and a half!

Vicki 🙂

[andygParticipant]

Hi Vicki & Colin
Hang in there Vicki I'm sure they will get to the bottom of Colin's pains. I haven't googled his new diagnosis so I won't pass comment on it. I've been reading up a lot about sct's lately ( allo sct's for personal reasons ) and they are frought with problems it is a major major reboot of the immune system. Unfortunately some have a lot more problems than others who happily sail through the process. I'm sure Colin is not unique though that is no comfort to you both at this moment. I do hope you get some respite soon and you can start to see the light at the end of the tunnel.
In the mean time Vicki you concentrate on Colin and don't worry about the rest of us we will be here for you as support for you whilst you need it. Colin is your number 1 priority.
Take care and don't spread yourself too thin Vicki.
All the best
Andy xxx

[VickiParticipant]

Andy

Thanks, have they found a donor match for you then? I remember reading an entry on the myeloma beacon site from a man who had donor transplant. Yes I think it's rough but he seemed so much better and making bit improvements. Also like the own cell transplant I observed how experienced and knowledgable all the staff are…..not much consolation but they've seen and done it all so are very sure what to do in the very strange world of transplant. Hope you had some good news anyway.

This polymyalgia thing, he did not have it before SCT and I reckon it came on after. It seems to be a rheumatic thing of the muscles…. Ourselves when I googled it I picked to read worse case scenario and that unnerved me. However I suppose what was worse than the myeloma thing!. They said that if the steroids made an immediate difference then it's more than likely to definitely be polymyalgia. And sure even today colins arms are much better and he can do more. Just another thing to get used to and as long as it's not life threatening that's all that matters.

Oh and finally, if all goes well he can come home tomorrow :-), hopefully for longer than 1 hour 30 mins!

Take care all

Vicki and Colin x

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