Yesterday I said I would try and blog once I got home, rather than using my phone in the hospital to write with. However nobody would have seen that post (until just now) as I posted it to the wrong blog by mistake!
Anyway here is an update:
I’ve nearly finished my fifth cycle of the PAD I have one more velcade next Tuesday. As far as I am aware I’m only having 6 Cycles, so one more to go.
The last month I’ve been totally exhausted and it has really taken it out of me. I’ve been sick quite a bit and and had constipation and diarrhea (not at the same time, but nearly). I’m also not sleeping at night, partly due to the shingle pain keeping me awake (yes I still have the pain) and partly due to my feet hurting/aching; caused by the Velcade and Doxorubicin.
Most days I’ve been getting a couple hours during the day when after taking some pain killers it gives me a few hours relief where I’ve been trying to sleep, not always successfully.
I’ve now had my blood taken to be sent off to Liverpool to see if there is a match with Nigel’s (my eldest brother). Nick my youngest brother hasn’t had his done yet as he has been working away and hasn’t been able to get to the hospital yet.
Other things that have changed since last blogging is that James has now moved out and gone back to Shrewsbury to live with his Mum again. I wont go into details, but it wasn’t working out for him up here with me!
On a really good note, I have wonderful neighbours. Chris and Jodie have worked really hard over the bank holiday period and throughout the week to build the decking in my garden as well as put up a shed and laid flags and stones in the front garden. I will post some pictures when I can. It looks really good and I can’t wait for some good weather to sit out in the sun, if we have any more!
Dr Lee has written to Liverpool asking them to take over for the transplant, so I’m waiting to hear from them soon I hope. Although I’m not really looking forward to having to go to Liverpool for my appointments. Apart from it being a lot further away, the environment isn’t as relaxed as it is in Chester and it is more clinical with lots more people being shunted through. My health at the moment feels about the same as I did when I got out of my first transplant, so I don’t feel as strong and as confident as I did the first time. I don’t think knowing exactly what I have to go through helps much either, as I’m probably getting even more stressed because of it.
I’m hoping there will be a break from the end of the cycle to when I go in for the transplant, to give my body a bit of time to recover; although I don’t want to wait too long, just in case my paraprotein starts to creep up again.
Time will tell.
This sounds like a rough road you've been on... many potholes and lumps and bumps. I am intending for things to do a turn-around for you right now, the shingles are going away, you are getting some better rest and overall feeling better and that Nigel is an excellent match for you. A relative in the states had a good match with a sister and has a great response since that transplant. I intend this is the same for you. I intend this for the highest and best good of all concerned, so be it and SO IT IS!!!!
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