[cygnetParticipant]

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

[cygnetParticipant]

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

[cygnetParticipant]

Hi Andy

Thank you for posting this. Please get well soon!

Love & hugs,

Cxx

[cygnetParticipant]

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 on how you are doing in this next chapter of your life. Take care of yourself  & happy motoring!

Love & hugs,

C xx

[cygnetParticipant]

Hi Bijou

How are you?

Sending love & hugs
C x

[cygnetParticipant]

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

[cygnetParticipant]

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 imagine this set of blood tests are ahead of this?

The Myeloma Helpline nurses are wonderful – don’t hesitate to contact them for more advice or support. You can e-mail if you prefer.

When you have more  details from your test results eg paraprotein levels you will  probably find it easier to use the information on this website to help interpret where you are.

It is scary hun..and it is crazy… but slowly the fog will clear for you- hang in there.

Sending love & hugs,

C x

[cygnetParticipant]

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 questions too (in my opinion). Life isn’t a dress rehearsal as the saying goes…..

Cx

 

[cygnetParticipant]

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 test for or monitor light chains. My consultant also said they don’t routinely define people as “smouldering” either – you have to ask otherwise you are defined as MGUS or active myeloma.

I have already discussed seeking a second opinion with a myeloma specialist with my gp but I have decided not to do that until I need treatment.

You may want to post separately to ask people about their experiences of Oxford.  There’s nothing to stop you visiting the unit to have a look around for yourself.  Good luck!

C x

[cygnetParticipant]

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 treatment/tests we face. Remember you can call the Helpline nurses too;  personally I felt very alone when I first heard the diagnosis “myeloma” & found talking to them helped alot.

Sending love & hugs,

C x

[cygnetParticipant]

Can I  please add my congratulations too!

Sending love & hugs,

C x

[cygnetParticipant]

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

C x

[cygnetParticipant]

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

[cygnetParticipant]

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 to try to understand how difficult it is for all concerned.

Sending love & hugs,

C xx

[cygnetParticipant]

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 solicitors will offer a free consultation. You may  also want to consider talking to your gp so the stress this is causing  you is officially recorded. Document everything to create paper trail – even an e-mail record will do.

Good luck & look after yourself

C x

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