PS Sorry but I have to rant to you all virtually as apart from my husband /GP I haven’t told anyone else about my “mischievous blood”. And to spare his stress levels I’m going to be blase about it when he comes home… 🙂

xx

Hi

I’m afraid I can’t help you but if you ring the Myeloma Infoline I’m sure one of the nurses will be able to.

I hope all goes well on the 18th

Cx

Hi Andy

Thank you for posting this. Please get well soon!

Love & hugs,

Cxx

Hi Eve,

We’ve never “spoken” but I’m one of the “newbies” who have read your  previous posts with interest since I joined the forum & been very, very grateful to learn from yours & Slim’s journey  & experiences. It has particular resonance for me as I’m not that far away from you in Kent.

Thank you for coming back onto the forum to update us o…[Read more]

Hi Bijou

How are you?

Sending love & hugs
C x

Glad to hear you’re home Mervyn – well done!

Thank you for sharing your experience – take it easy & take care of yourself as you build your strength back up.

Cx

Oh dear –  I’m sorry you are having  such a difficult time. It’s bad enough being where you are without lost bloods & yet more confusion.

Could you talk to your GP  about feeling breathless while the hospital gets itself organised? I think most people get their first haematology appointment within 10 days or so of the initial findings – I im…[Read more]

Good luck with your August appointment at the Marsden Ben – it will be interesting to see what they offer you.

It does seem sadly to be a bit of a treatment/postcode lottery out there which is why this forum is so useful & why we need to support Myeloma UK to help them keep campaigning on our behalf. We owe it to ourselves to keep asking…[Read more]

Hi Ben

The Helpline nurses can supply you with a list of leading myeloma specialists/units if you want one.

I am monitored at a small haematology team at a unit in Kent & I am intrigued by the variety of approaches everyone on here describes. I think the protocols are determined by local policy & funding – my unit for example does not routinely…[Read more]

Hi Bijou

So sorry to hear your story & I’m not surprised you’re feeling frustrated and angry. When do you see your consultant again ? Perhaps it will help when you have a clear indication of your treatment plan.

In my experience there is always someone on here to listen and lift your spirits & with a wealth of experience around whatever…[Read more]

Can I  please add my congratulations too!

Sending love & hugs,

C x

Sorry to hear about this Mike – fingers (& everything!) crossed for your next blood test.

C x

Hi Sandra

So sorry to hear you & your husband are having to deal with this.

Have you rung Ellen or any of the other specialist nurses on the Helpline ? They are very helpful & have been a great source & support for many of us. You can e-mail them if you prefer.

I hope this helps

Cx

Hi Vicki & Colin

I’ve just returned from holiday ( landed @ 1am) & just popped on here to see how you are!

It’s funny how this community evolves like an extended family isn’t it? I’ve been away since the 17th June but have been thinking of you & wishing you well . Although I have not yet needed treatment, by reading posts on here I am starting…[Read more]

Hi

As David said you have enough to deal with so I am very sorry to hear about your work-related stress.

I would strongly recommend you take this up with your trade union – I have  some union experience &  management experience & this does not sound right at all to me. Alternatively you could speak to someone like the CAB or, many employment s…[Read more]

Hi – sorry to be slow in coming back to you.

As well as considering seeking another opinion on your SM, have you thought about seeing an osteopath, physio or chiropractor? I suggest this because my regular osteopath/physio sessions & exercise help me manage my pain. Please bear in mind issues with your upper back ( cervical/thoracic spine) often…[Read more]

Hi – I’m sorry to hear you’re suffering….

Can you describe the pain for us? I ask because I too have smouldering myeloma & quite alot of joint pain – including back pain. I’ve had neuropathic pain in my abdomen /pelvis – is this similar?

What sort of arthritis do they say it is?

I do feel for you because chronic pain is so tiring & it’s also…[Read more]

Hi Vicki

I’m sorry to hear you & Colin are having such a difficult time with this. Just to let you know the nurses on the Myeloma UK helpline can e-mail you a list of specialist centres with the leading myeloma consultants.

I hope this helps,

C x

Welcome home Ian!

I’m glad all has gone well after all your worries.

Love & hugs to both of you

C x