[ree2112Participant]

Thanks for that bit of advice. It’s really appreciated.
My CNS has told me to be the tortoise, as in the fable, so I’m listening to my body now and resting when I need to.

[ree2112Participant]

Thanks both
I’m feeling a fraud. I’ve been on about this blooming SCT forever well it feels like it.
I haven’t been into work for the past two days as I feel a fraud. I’d made plans for being off and I’m still blooming there.
I don’t like being woe is me at all but I don’t feel like me at the moment. I should write this down in my notebook.
Jane, what you said about your friend is really encouraging as Dr F did say that would happen so fingers crossed eh?
KH0305 I hope your dad’s doing ok with his treatment now.
I’m sorry to bore you with moaning but thanks for caring xx

[ree2112Participant]

Oh Jane
It’s appointment after appointment isn’t it sometimes?
Last week I had Medical Physics on Tuesday then 24 hour urine collection and Thursday my SCT consultants appointment. It does all blur into 1 at times.
I haven’t heard anything from my consultant about my test so I’m taking that as a positive.
Thanks for taking the time to read, reply and care.
Marie xx

[ree2112Participant]

Morning Tony
I’m travelling to a different hospital at the moment about my SCT but that’s another story!!!
I do ask for my levels when I go for my zometa and get told they’re ok. When I speak to my CNS I ask her and get told my creatinine levels are high and then get told to drink more.
Since I got admitted with severe back pain to diagnosis until now my consultant has been a bit rubbish. But now my new consultant is not leaving any stone unturned.
I am in no doubt my kidneys are fine but the purpose of my original post was wondering if anyone else had been to the Medical Physics department and what they do…. But I’ve been now !!!
Thanks

[ree2112Participant]

Hey kh0305
Not heard anything from my consultant about yesterday but they do say no news is good news don’t they.
I think my consultant is trying to do her best for me as the other one didn’t. She is thorough.
It was boring thank goodness I’ve taken up cross stitch again!!!
Thanks xx

[ree2112Participant]

Today was BORING
I was at the hospital for 08:40 and left 7 hours later.
I was injected with some radioactive stuff and bloods taken at 4 hours and 6 hours intervals. It went straight to the centrifuge.
My consultant will have the results tomorrow sometime.
I’m very tired tonight all that sitting around doing nothing…
Bonus though I bumped into my sister and brother in law.
I hate the unknown but isn’t this myeloma just that? The unknown

[ree2112Participant]

Morning Tony & Mulberry

Tony… Yes I have had a biopsy and I have been formally diagnosed with Myeloma. That was back on 22 June 2020. I’ve had 4 cycles of VTD and have been harvested ready for my SCT. All through my treatment my kidney function has been a bit rubbish. I’ve never been given any GFR rates from my medical team other than the other month when I did all the other times I was told “could be better” although my creative has been as high as 144. The Myeloma has taken my spine but my new consultant has noted I’ve never had them scanned. So maybe it could be the multiple not the singular.

Mulberry… I am so pleased that my new consultant has taken over my care. She seems totally on my side. I’ve finally got someone in my corner. She’s chasing my SCT team (I even get phone calls, well I’ve had a call from my SCT CNS which is rare) and I think she’s checking all bases for me.

Both… Today will be another experience in my Myeloma journey and thank you for being with me.

Marie

[ree2112Participant]

kh0305
How is your dad?
I’ve had a new consultant since I first wrote this and quite a lot has happened too.
My hubby got in touch with his sister’s palliative consultant as my old consultant was dragging her feet, who agreed to see me back in March. I now have a hospital bed as I couldn’t sleep with my back pain. I have got my pain under control too. I’m on morphine 3 times a day plus oromorph if needed, so pain is all good 🙂
My new consultant turned out to be the one on the phone and oh boy I was wrong about her. I went with my hubby as I was expecting a telling off for sorting my pain out but no, she wanted to know how we did it and John in his bluntness told her… I was asked how often I go to the CNS clinic, I didn’t know she had a clinic. She now phones me on a regular basis. She chased my Stem Cell Consultant and I got a call from him back in May. I’d been chasing information for months and nothing. But I’m still waiting for that!!! I even got an impromptu phone call from her the other week wanting to know why the transplant is still pending, asking if I still hear from my CNS and a general chit-chat. Although, she did tell me I must not have any more delays to the SCT as proteins are showing in my bloods again.
Oh and as I’ve never had my kidneys checked, she was going to get in touch with the medical physics dept. The next day I got a phone call with an appointment.
I feel for once, I’ve got someone in my corner.

Marie xx

[ree2112Participant]

Sorry for late input.
I’m the one in our family with MM and we’re travelling to the South of France in our motorhome.
I got our travel insurance with Staysure. We’ve used them in the past numerous times as my hubby has type 1 diabetes and they cover illness. Because of my MM being in remission, no SCT (but that’s another story) we could only get a single trip cover and it was almost £260 which I didn’t think was too bad.
Have a good holiday.

[ree2112Participant]

Back at the beginning of my treatment, I was on VTD and couldn’t stop itching. A neighbour suggested an antihistamines and it work. When I started on Lenilidomide the same happened again so I was back on them. Just supermarket tablets worked brilliant for me.

[ree2112Participant]

I had terrible swollen legs the other week. I mentioned it to the haematology doctor who I was having a telephone appointment with, and was told to get in touch with my GP.
I couldn’t get an appointment to see him but the surgery sent me a link to send photos to ready for the next morning when I might be able to get a call back. Anyway, he did phone me the next day and looked at the photos his reply was @oh my. Dear o dear’ I explained to him that it hurt to walk and I’d been in bed with my legs raised etc. He asked if I had seen my CNS which I haven’t since August last year. He told me that she should stay in touch every 4 weeks and if this happens, compression socks can be ordered. I’m on strong water tablets and still manage to swell.
I hope your dad is feeling better.

[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

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