[ree2112Participant]

Hi kh0305
I hope your dad is getting on ok.
I feel like this journey is getting beyond a joke now. My last appointment was with a doctor from haematology not my consultant, that didn’t bother me as it’s expected but her attitude was very crap. I asked about my blood results and all I got was yeah they’re ok. I asked about my kidney results and I got a half-hearted answer saying that wasn’t good. No levels, no numbers, no nothing. At the time my legs were severely swollen and I told her. The response I got was that I’ve always had swollen legs. At this point I got a bit shirty… I informed her that I haven’t had any swelling since my chemo ended and that it was a side effect from said chemo. This I was told by my transplant consultant. Her response was that it could be heart trouble get in touch with your GP. I’m in terrible pain with my back and apparently was supposed to have a referral to see someone about pain management. When I asked all I got was it’s a different department, you’ll have to wait. Does anyone else feel like they’re a drain on medical resources? I do!
Oh well, I’ve got a face to face next month with my consultant. Still nothing about pain management though.

[ree2112Participant]

Hi
Yes it went ok thanks. I’ve had my next appointment through already! I wouldn’t say it was a positive consultation as she asked if I’d heard from transplant hospital. I said I had heard from anyone but wasn’t expecting to due to Covid (such a swear word 🙁 ) and they’ve got to be below 15,000 then I may get my SCT. She laughed telling me I’m going to be waiting a long time. She doesn’t fill me with the greatest confidence. Oh well.

[ree2112Participant]

Hmmm…
Out of the blue, I’ve had a phone appointment come through with my consultant. It’s this Thursday, First 1 in 3 months. Had my bloods done yesterday so hopefully she asks for the complete set of results unlike in October.
In my original post, I put that my kidney function was good. Not this time. I was on the limit whether or not I got my Zometa as it was so poor. Worrying…
Oh well, fingers crossed everything goes well.

[ree2112Participant]

Hiya…
Your CNS is your cancer nurse specialist, if you have one that is.
Chin up

xx

[ree2112Participant]

Hiya
I don’t know if it is the lenalidamide. I feel all my husband is there for is to rub whatever part of my body is cramping whilst on this drug. I love him dearly but I do feel like I’m failing him, he says not but you can’t help how you feel… One side affect mentioned on the McMillian leaflet is erection problems so I’m wondering if it works both ways hmmm
You will feel human again but when I don’t have the answer, sorry. Have you approached the subject with your CNS? Have you seen your GP? Maybe some form of counselling might be a good idea because let’s face it we’re all going through a bit of a crappy time and a little bit of love does no harm.
Good luck xx

[ree2112Participant]

Mulberry – I’ll check that site out. Thanks.
Fendi03 – totally agree if I’m doubt ask the professionals. That’s what I say.

I’m a bit nosy and see how people react to their SCT and wish them well with a 👍 (like).
I’m only a patient with MM and definitely not qualified to offer medical advice it’s not helpful but can comment if I’ve experienced similar but always sign off with ‘ask you medical team’.
It really annoyed me yesterday when ankle swelling for 1 person was diagnosed to kidney failure by another. WTF???
I’m no doctor I’m a patient who listens and it goes in 1 ear out the other. I listen to the good things I’m told it doesn’t qualify me to diagnose that what I got annoyed at.
Sorry I had another rant

[ree2112Participant]

I’m handwriting a daily log (I feel like I’m on the Enterprise, but I’m not a captain with his log haha) I digress, I’ve taken it from when I first attended my consultant’s clinic which was 1 July 2020.
I’ve put down everything so it might make an interesting read to someone one day. I’m on book 5.
I’m waiting on my next appointment with my SCT consultant (10 June) with the date of my admission etc. I’m going to take my note book in with me. I might take the hubby’s tablet and compare notes on your blog.
I won’t read it yet as I know it will be a difficult journey but thanks a lot for sharing.
Did it help with your recovery? I’ve found my writing does.

[ree2112Participant]

Hi Ros
How’re you getting on? Hope you’re ok. Just being nosy 🧐

[ree2112Participant]

Hi all
My back brace is like a velcro corset too. I’ve got an aged fracture on my T8 and one a lower vertabrae but I’ve lost my T7 and shrunk 1 1/2 inches. I couldn’t afford to loose anymore inches, I was only 5′ 3 1/2″ to begin with (haha).
I haven’t been given a length of time for me wearing my brace, I’ve had it since August last year. I just put it on, especially if going out.
Sue, mine is washable, but obviously take the rods out, with mega shots of fabric softner. I let it drip dry. All’s good when I put it back on.
Good lick with everything.

Marie x

[ree2112Participant]

Hey Susieundies. I was lucky with my chemo but then again, I didn’t think of it as chemo as it was just an injection in my vast tummy… I had Bortezomib (Velcade) with Dexamethasone and Thalidomide and treated it as more meds to make me rattle. I had 4 consecutive cycles, didn’t have all of them complete as I suffered with water retention and lack of breathing but I got through. There were tears. quite a few, but I kicked myself up the backside and carried on for another day until the tears come back. I used to dread going for my injection for fear of being admitted into hospital again. That was back in the summer. I got through it and celebrated my last injection (Thursday 17 December 2020. Not like that I remember it haha). All the nursing staff were lovely. So is my consultant and specialist nurse, unlike yours by the sounds of it. We all seem to be robust until this hits us like a hammer in the face. Have you spoken to anyone? Are there any groups local to you? You can pm me if you like. You’re not on your own xx

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