Just wanted to share really.
I’m fairly new to it all so forgive me if I ramble on a bit!
Firstly let me say I have a beautiful family BUT I don’t think they quite understand how I am feeling.
It all started with a really worsening bad back last year when I was in severe pain. I was advised by my physio to go and see my GP. The GP noticed some issues with the white cell count and referred me to the haematology clinic. I received a call 2 days later from the Consultant to advise me I had MGUS ( I had no clue what it was ) and that he was placing me under the care of Clatterbridge Cancer hospital. I nearly fell through the floor.
I then had a bone marrow biopsy a couple of days later which showed that I had moved to Smouldering Myeloma! I will now be under a wait and see sort of approach. I have now also had a hysteroscopy as they have spotted a thickening of the lining of the womb. I am awaiting the results from that. In the meantime the continues to be horrifically painful and I remain under the neurological consultant.
I am just tired and feel so in limbo !!
Sorry for the essay but I feel I have likeminded here
Hi @LettyLaw and I am so glad that you have found us and had the courage to post.
Firstly I think your first paragraph and last sentence say it all.
I firmly believe that you are amongst like minded people on our forum, no matter what blood cancer we might have.
You are now part of our forum family.
I couldn’t explain to family (who I love dearly), friends and work what I did not understand myself.
I think anyone who has not had a shock diagnosis like us finds it very hard to understand and especially as you say you have been put on a ‘watch and wait’ (active monitoring) regime.
Everyone, including me, felt I would immediately be treated, cured and we would all get on with our lives, happily ever after.
I especially related to your post as I have chronic back pain.
I have been on a ‘watch and wait’ regime for 19 yrs.
I was diagnosed by a gynaecologist after an op, and a few years on I had a hysterectomy.
I think back pain really is so wearing and really wears you down.
Please be pleasantly assertive and persist in saying how bad your symptoms are and the effect they are having on your life.
We and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please keep posting and letting us know how you are.
Look after and be kind to yourself
Hi @LettyLaw. @Erica has said lots of what I would’ve and had given some great advice.
The initial diagnosis is so tough and we all remember it so well. I’m so glad you have such a supportive family but completely understand when you say they don’t completely understand. I don’t think anybody does unless they are in your situation, that’s why the forum is such a great place to share and say what/how you really feel.
Keep posting - we are all here to listen and support X
So So frustrating,if I ramble apologises in advance. I fully understand Dr,s ,Consultants, are terribly busy,and yes I know I am not there only patient.
Yes a But coming !!
I am NHS patient,and also NHS patient under Doctors at Private Hospital.
I previously said had lumbar spine MRI 4th February (nhs) at private hospital,my general GP sent me there to Orphopedic (spelling I know) regarding 14months of horrendous lower back pain and left side hip pains .So outcome my hip pain is referred pain from the back spine area,he got me MRI scan,however this not his medical expertise.
Follow up appointment two weeks ago, I referred to Spine Surgeon April 26th,but briefly said can be compression fracture disc L4-L5 ?? Rang hospital today please can I get results now ,nope waiting till April
Super stressed anxious,why not tell me
Ps my tappy tappy finger hurts now
Hi @Kevin1 I have fractured and compressed L1-5 and T12 this has meant I have lost 5in in height, I am now 1/2 pint sized !!!
10 yrs on I now manage to do a lot of walking every day, apart when it is chucking it down.
The main thing is to look after yourself and try and keep moving although it might be the last thing you want to do. I am not medically trained so do follow medical advice though.
Since diagnosis I seem to be to spend my life waiting tests, results and appointments
Be kind to yourself and please keep posting
Hi LettyLaw. Just know we are here for you and dont worry if you need a rant. We all do time to time.
Good morning all,
Touching base on latest ongoing/of going’s,yea feeling alone even if you fortunate to have great wife Children best friend mental health access,yet wake up having that black cloud above you,first steps (crutches)having concrete blocks for slippers.
I’ve been lucky had CBT courses,mental health assessment,psychological assessment.
Aware of the tools skills learnt,but still it’s tough struggle.
Update! Back Op cancelled(lipoma big)end may now …anxiety stress .
Next Wednesday see spinal surgeon regarding MRI lumbar scan results!
Mondays Blood test’s every 3months MGUS…serum protein electrophoresis (abnormal as expected) B12 raised? Anyone know about Serum creative kinase? This was above the normal is it myeloma/kidney related? No Doctor call just results released on my patient access.
Pacemaker still on discussion for when!
Yet 15months on have that dull stabbing lower back pains ,hip and left leg pains come go,the bone not muscle 7/10 constant sitting sleeping it’s there .
Meself I advocate to find out things,I keep on to medical people,am not waiting till MGUS has reached myeloma stage,when obviously I’ve problems now ,do not want kidneys to get damaged,especially if this should have been avoided.
Those suffering from all blood disorders keep posting and talking
Hi @Kevin1 yes, I know that feeling alone even though I have family around me. It can be a very lonely place and I know that I can revert into my shell as well.
I also have tools in my tool box, but I sometimes forget to use them.
Yes, I really find posting on here helps, it is like talking for me.
However if we need to talk we are lucky enough to have the Blood Cancer UK support line on 0808 2080 888.
Thanks for posting @Kevin1 you have made me think.
Look after yourself and yes, keeeeeeep posting.
Sounds like you have a lot going on. I hope you will get the answers you need from the spinal surgeon regarding your mri. You must be very frustrated about the cancelled op. I guess you will also be having a conversation with your haematologist over your latest bloods. It is a lot to cope with. Hope all goes well and keep posting.
Just seen your post. How are you doing?Welcome to the forum. No need to apologise for your ‘essay’. You are amoung friends here, who understand the anxieties that an unexpected diagnosis of something you have never heard of before and crappling to comprehend what it might mean for yourself and your loved ones. I have igM mgus. Do you know what type of paraprotein is in your blood? My husband switches off when it comes to medical matters and illnesses and doesnt try to understand. I haven’t had a bone marrow biopsy as my paraproteins are currently low. Watch and Wait can be quite stressful too. A bit like living with a ticking time tomb that might or might never detonate.