Oh bless you – why do they do this!!! You have every right to rant……
They tried to postpone my appointment like this ( for first results from bmb etc. Answers to the big “have I got cancer question). Actually they left a message on my answerphone on Monday afternoon saying “Do not come to clinic this Wednesday – we have rebooked you for next Wednesday…” I went ballisitic – husband had taken day off,( & couldn’t come the next week) appt booked 7 weeks ago etc etc etc. In the end I rang the consultant’s secretary & said- like you – I was coming as booked & would jolly well sit there till someone spoke to me. She put the phone down on me!! Then she rang me back ( all sweetness & light) & said (grudgingly) the consultant in charge had said ” well you’d better come along then.”
By then my Gp had offered to fax a letter to support me being seen as booked as he was equally horrified at their behaviour. Trouble is, as patients, we’re loathe to complain officially because we feel vulnerable… & then they get away with it!
I’ve been keeping everything crossed for you – do hope all went OK
C x
Hi Helen,
Hope all goes well with your appointment.
C xx
Hi – I’m sorry you’re having a stressful time.
I agree with Richard though, do ring the Myeloma nurses on the Infoline – I have done several times & have found them wonderfully helpful & reassuring. I also think you should ring your nurse specialist because she can help you interpret your results & refer to your consultant if clarification is needed.
MGUS is a confusing diagnosis so please don’t feel you are alone in feeling bewildered & worried. I have been researching it alot & there seem to be conflicting views about how “benign” it is but every case is different. There is loads of useful info on here but I would also suggest looking at the Myeloma Beacon website. Mgus itself is where the stress begins I think because although we are told “good news… no treatment” & put on active monitoring it’s difficult to know what’s normal when there’s so much grey & nothing’s black & white. I hope this makes sense.
When I start stressing now I try & remember I can’t change my blood or bone marrow chemistry – if anything stress will make me more vulnerable. However I have learnt that there are markers for when treatment begins & very little happen that quickly so that’s what the monitoring is there for.
We’re all different but I finding the saying “Life isn’t about waiting for the storm to pass- it’s about learning to dance in the rain ” is helping me stay calm as I come to terms with where I am . ( Yes.. OK.. I drum my feet & stomp sometimes but I’m only human!!) Sometimes we all have to cry/vent/rant too. That’s difficult but this is agood place to do it 🙂
For me,tiredness seems to be my worst enemy because it distorts my perception & like you I have other medical problems which drag me down so on my GPs orders, I am trying to be kinder to myself. With three children & recovering from kidney problems ,you must be exhausted. I feel for you.
I hope this helps –
Love & hugs,
Cxx
Hi Janey
I can’t help with this personally but have you thought of ringing the Infoline? I’m sure the nurses will be able to help you.
Good luck
C xx
Hi Chrissie
So glad you’re feeling calmer & talking to Ellen helped. Nothing wrong with a good cry if it lets out the pain & makes you feel better. It’s tough living in this parallel universe as we try to stay strong for those around us. Don’t give yourself a hard time hun.
I’m adding my love & hugs to those above!
C xx
Hi Yvonnese
Sorry to hear you’re having a difficult time. I am in a similar position to you in terms of being classed as mgus/borderline myeloma – and yes, I hurt alot of the time!! Bone ache/muscle pain….. it sounds horribly familiar! – & I am an active person who does Pilates 5x per week. When I spoke to Ellen ( one of the Infoline Nurse Specialists) she confirmed it is not uncommon and if you go to the American Myeloma Beacon website you will find more discussion on it. We are not imagining it!!
I ended up at Haematology via Neurology ( like you I have pins & needles which was diagnosed as peripheral neuropathy) & the neurologist recommended gabapentin &some other drugs but I decided I didn’t want to take stuff 24/7. My Gp is very good & he has prescribed painkillers which I take if I’m desperate. Stress & lack of sleep do make it worse but when you’re struggling to function because you’re in pain & worrying about appointments & what the future holds, life becomes stressful so it’s all a bit chicken & egg !!
I don’t think there are any easy answers but I know from personal experience that there is alot of support on here & it helps knowing you’re not alone. I’m also getting into mindfulness which seems to help me .
Be kind to yourself & try & stay positive:)
C xx
PS Helen & Chrissie – sorry to hear you’re having some tough days. I’m sending virtual love & hugs to you too xx
Hi Noel,
Thinking of you & hoping all goes well 🙂
C x
Andy – so pleased to hear this news! I have read many of your posts & appreciate your input into this website.
I have everything crossed for you for your appt!
C xx
Hi Rosie,
Just wanted to add my best wishes to Keith’s!
I hope all goes well tomorrow 🙂
C x
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 needed anything – info or results chasing.
If you’ve had contact with the Marsden could you try their specialist nurse directly? One common theme reading posts on here is that you really have to fight your corner – or that’s how it seems to me.
Or speak to the specialist nurses on the website Myeloma Info line here. I have found them invaluable already & I am very early on with my myeloma/mgus journey.
Sending “virtual” love & hugs,
C x
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 everyone on here very supportive, reassuring & helpful & the Info line nurses are too. I believe “knowledge is power” & understanding does help keep things in perspective. It can seem a scary, lonely place to be when you’re in limbo waiting for results.
I am 53 in a few weeks time & I have read 3 out of every 100 over fifties test positive for Mgus. If we are identified early we can be monitored & therefore offered treatment if necessary – I see this as a good thing.
Stay positive – there are many inspiring stories on here to read when you need a boost.
Love & hugs,
Cx
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
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 suggestion that I had a brain tumour ( which was not found) multiple sclerosis ( seemingly ruled out). He accessed the blood tests which had led to the haematology referral & yes there were alot of red exclamation marks indicating something but I have taken his advice & tried to stop worrying/panicking. I can’t change my blood chemistry!
I’m glad you’re starting to recover from the bombshell that was your diagnosis. It sounds like you’re doing everything right to keep as well as you can.
Love & hugs,
C x
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 you have made me feel much better & less alone.
Noel – thank you for your reassurance re referral onto a myeloma specialist & for sharing your experience of how your bone pain progressed. Mine has never been persistent for longer than 10 days – more flaring but I understand about it impacting on driving. By saying that was more than an issue than treatment, you have made me feel tons better!
Thank you Chrissie for your kind words too –
I wish you both well & will let you know how I get on
C xx
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 stopped you driving – even for a short time?
I am 52 – I have been to & fro my GP for about 2 years with what now seem to be ticking the box for Myeloma symptoms. That said they previously investigated me for head cancer, possible brain tumour & then suggested it might be MS! It is the neurologist who has picked up the paraprotein & referred me to haematology.
I hope I am in safe hands but I will talk to my GP about that later as tactfully as I can. My local hospital is in NHS special measures.
Thank you so much for your reply
Grateful thanks & wishing you well,
Cx
