Heartbroken

Hi

I have had Mgus for about 6 years with regular 3 minth blood tests. In October last year I started with what I thought I had started with some muscular pain not until March this year did I see my GP due to our circumstances.

He sent me for an MRI and then a CT Scan followed by a full body MRI and a Bone marrow biopsy.

It was then confirmed I had multiple Myelomas in my spine, ribs, and pelvis. Not the best news to be honest but told whilst incurable it can be managed.

I won't lie, we've had our weepy moments but on the whole staying positive.

I have been started on a new regime of Chemotherapy. Tablets at home and twice weekly visits to Lincoln for my obs and 2 injections in my stomach one visit and one on the other visit.

I have experienced no nausea at all. Dexamethazone seems to be the only drug that really affects me, keeping me awake but I only take them twice a week.

Being type 2 diabetic I have to watch my blood sugars as some of the steroids can raise my readings.

I have just turned 60 but now my morphine dosage has been correctly calculated my pain is now manageable where before I was excruciating.

As is your husband, my vital organs have remained untouched.

12-16 more weeks of chemo and then it's off to Nottingham for a Stem Cell Transplant to knock the legions into next week.

Stay positive, we are in the best hands possible. Life has dealt us this hand so we must play along.

Anytime you need to talk, we are all here for you.

Too look at me you would never think I was receiving chemo.

Stay strong

Dave xxx

Hi Dave The Jolly Northerner. I just noticed that you are going on to have Stem Cell Transplant……. We do actually have a dedicated Stem cell transplant support group where folks from many blood cancer types support each other on the SCT rollercoaster.

I have a rare type of Non Hodgkin’s Lymphoma and after 16 years treatments went on to have two Allo (donor) SCTs and I am now coming up to 6 years in complete remission thanks to SCT.

You may want to have a look through the group.

So sorry for your diagnosis. My partner just got diagnosed with mm too we have just had a new baby and moved into new house when he got diagnosed. He could not move off the floor as he had fracturn his back that we didn’t know of, he couldn’t walk or wasn’t mobile in any way he’s only 45. We were shocked when they said he had cancer. He is now in a much better place and more mobile he’s wag to go for his stem cell transplant at the start of September I’m hoping this gets him into remission and go back to the things he loved doing. He loved golf he’s not done it in over a year it toim over 5 months to hold his new born baby but he can now and honestly couldn’t be prouder. There is hope and I’m hoping after transplant he leads a normal life. Good luck to you

Thank you so much. 
My partner is 51….although he had been under the eye of the hospital for a few years due to his paraprotein levels and we knew that eventually one day it could lead to his , it was still a huge shock.

He has been a lot stronger about it then I have…I’m finding it extremely difficult.

May I ask how he was during chemo? Did it affect him much? I read different stories about people that handle chemo pretty well and still manage to go to work at least part time and then those that really can’t.

He wants to continue to work as he believes that it will be the best for his mental health and I completely agree.

Wishing all the best for when your partner does his stem cell transplant

Thank you so much…sorry for the late reply..:I have been struggling.

My partner is also high risk due to 2 gene mutations ..it feels like everything is against us. 

I hope that my partner is like you in terms of side effects from the chemo….he really wants to continue working, even if it’s only 3 days a week. 
He knows that if he just stays home it will bring him further down and that won’t be good.

I know that he will have to go at least once a week to the hospital for treatment …that day he will will need to be there for quite a few hours. 
There is an injection also that he needs to have but doctor said that if he can give it to himself at home then it will reduce number of days he needs to go to the hospital. Then there will also be the 2 different pills..not to count any sickness etc …it’s a lot to take in.

I really wish you al the best and hope that when SCT comes around that it gives you the best possible result of complete remission xx

It is a shock especially the word cancer you think the worst, I was the same at the start I didn’t know how to handle it but over time you begin to accept it  he has been totally fine on chemo no side effects a little tired but that’s it, he has stopped work for a while due to the bone pain he has had due to fractures he is hoping to go back next year on stem cell is over with, I think if he can work and chemo doesn’t affect him he should, like you say it’ll help his mental health it isn’t good being stuck in the house 24/7. Good luck to you and yor husband yous will get through it ️

Dear Ema, 

I'm so sorry to hear your news. My partner is currently having treatment.

For me, the process has not been anywhere near as lonely (or alone) as I had feared.

Sending you lots of positive & healing thoughts xxx

Dear Penny36

Thank you so much for your reply.

Im sorry to hear that your partner is also having to go through this.

How is he doing with the treatment ? How are his side effects ? I think the unknown is what scares me the most.

We at least now have a date for treatment to start 29th August

sending you and your partner lots of healing love xx

Sending my deepest sympathies xx

Hi sweetie 

Been thinking if you and your partner.

How's it going?

1. Sending you both lots of love, hugs, and healing thoughts xxxx ️