cygnet replied to the topic Trying to find how best to cope in the forum General 11 years, 9 months ago
Hi – & thank you for your earlier reply to me. I’m still catching up with myself 🙂
I’m sorry you are having such a difficult time. Have you tried talking to your gp? I understand from mine that referrals on are made via him & even yesterday when I spoke to another partner at the surgery( my dr is on holiday) she told me to call at any time if I…[Read more]
cygnet replied to the topic Waiting and worrying about diagnosis in the forum Newcomers 11 years, 9 months ago
Hi Rosie,
Yes it is a bit of a rollercoaster ride mixed with “wait & see” isn’t it? I’m a few weeks ahead of you ( first haematology appt on December 1oth )& now in the test cycle – skeletal survey, bone marrow biopsy, more armfuls of blood etc etc!! It will be the end of the month before I get confirmation of where I am with this.
I have found…[Read more]
cygnet started the topic Myeloma Specialists – London/South East in the forum General 11 years, 9 months ago
Hi All
I am looking for personal recommendations for myeloma specialists in the London/South East area. I am only just starting my myeloma journey but my first appt at my local hospital made me decide if treatment is suggested I would like to go to a specialist for a second opinion.
I have a list from the Myeloma UK nurses but am interested in…[Read more]
cygnet replied to the topic Low blood pressure after bmb in the forum General 11 years, 9 months ago
Hi Fozz
How are you feeling? I’m new to the forum & a few weeks behind you in terms of tests etc but reading your posts it sounds like you’re having a dreadful time.
Thinking of you
C xx
cygnet replied to the topic Advice welcome in the forum Newcomers 11 years, 10 months ago
Hi Helen,
Thanks for this – I feel so much better tonight which is helping me get a “sensible head” on ready for my appt:)
Everyone who has replied has been so supportive – as was my GP, who has been there for me through previous not-so-tactful letters from the hospital. In fact we even found ourselves laughing about it as he pointed out the…[Read more]
cygnet replied to the topic Advice welcome in the forum Newcomers 11 years, 10 months ago
Hi Chrissie & Noel
Thank you both for this – I really appreciate it. Both of you reinforce my thoughts that if I need a bone marrow biopsy I will sally forth with a local & loud music!
I have just been to see my lovely GP who has looked at the bloods with me & told me not to panic, get some sleep & wait & see what the appt brings. All three of…[Read more]
cygnet replied to the topic Advice welcome in the forum Newcomers 11 years, 10 months ago
Hi Noel & thank you for this reassuring info.
If I understand your history correctly, you are now preparing for an allograft transplant – I wish you well.
Can I ask a few more questions; was your bone pain persistent or did it flare & then subside?Also have you managed to keep working &/or exercising around your treatment. And has treatment…[Read more]
cygnet‘s profile was updated 11 years, 10 months ago
cygnet replied to the topic Advice welcome in the forum Newcomers 11 years, 10 months ago
Hi Chrissie,
Thanks for this very welcome reply. I feel very alone with this & the timing is terrible as I am currently spending every weekend crossing the country south-east to south west as my mum is in the final stages of pancreatic cancer.
Can I please ask did you have conscious sedation or local anaesthetic? And could you return to work the…[Read more]
cygnet started the topic Advice welcome in the forum Newcomers 11 years, 10 months ago
Hi all – I’m hoping for some help!
I have an appt with the consultant haematologist on Wednesday after blood tests done by my neurologist showed high protein levels with ” a strong suspicion of myeloma”. This first mention of myeloma was in a letter which came with my haematology appt!!!
I’ve had more blood tests ahead of Wed’s appt but what…[Read more]
cygnet became a registered member 11 years, 10 months ago