[keznmelParticipant]

Hello to you all…

I have found myself reading so many of your posts on here for weeks, maybe months and it's lovely how much support you all give to each other. I now feel that I could do with some of your shared support – I'm finding things really tough! Here is our story…..

My name is Kerry and am 37 years old tomorrow – it's my 39 year old partner Melvin who has MM. We have been together for 17 years and have 3 beautiful children, 15 year old daughter and identical twin boys aged 11. Our journey started 15th December 2010 when Melvin was diagnosed with a Solitary Plasmacytoma and fractures on the L3/L4 vertebrae after collapsing while doing a routine gym work out. This was followed by 30 sessions of radiotherapy which seemed to do the trick. We were then seen by the team at the hospital every 4 weeks to have bloods checked etc with no treatment until things started to change in February of this year. During the 'smouldering' phase, Melvin did notice more bone pain in his back and ribs and started taking Gabapentin pain relief, however his protein levels didn't rise much at all – so no treatment was necessary. In August of this year – Melvin was admitted to hospital with fractures to the ribs and shoulder. It was then decided that Melvin was to start chemotherapy Myeloma XI trial, RCD arm which commenced on the 4th September 2012.
During the night on 9th September, Melvin had sudden indescribable (as he put it) pain down his legs and back and couldn't weight bare or walk at all. After a 999 call, we were taken to hospital where they tried to manage the pain – eventually relieving him for a couple of hours before coming back with the same force. Melvin's stay in hospital lasted 4 weeks in total with CT scans, MRI scans, Bone marrow biopsy etc etc. The final outcome was that they found that Melvin's L4 vertebrae and pedicals (the legs that support it)had completely collapsed due to the disease and his spine is unstable. He also has spinal cord compression caused by this. He was put in a spinal bed for a few days and later fitted with a spine brace that he has to wear if he sits up.

Melvin is now at home and is currently half way through the 2nd cycle of RCD. He is unable to walk around due to the spinal cord compression – the most he is able to do is walk to the toilet while using the brace.The rest of the time he has to lie flat on a 'new' bed that we now have. He is taking MST twice daily, Gababetin and Oramorph for pain management which does help. We are waiting to hear from the Neurosurgeons at the QE hospital in Birmingham to see if they will be able to operate at this stage but it seems unlikely at the moment due to the Myeloma being so aggressive in the spine.

My Melvin has always been such an active and sporty man and it's heartbreaking to see that he has lost so much independence. He is off work long term which is awful for him. We have had so much equipment delivered to our house…so so much. Which, yes is helpful but it makes everything seem so real – if you know what I mean?? Melvin is getting depressed, as am I although I am trying so hard to push myself to keep it all together for our family.

I just don't know what the future is going to hold! I'm worrying about everything…! Everything has happened so quickly!

I would love to hear from some of you…and I hope this finds you all as well as you can be.

Love and best wishes to you all and thank you for letting me release some of this pent up frustration in this message.

Kerry xx

[LornaParticipant]

Hi Kerry

My goodness you have been handed quite a bad hand haven't you? I remember how overwhelmed I felt when my partner was given his original diagnosis, but I have come to realise over the last couple of years that we had it easy compared to others like you.

I'm not much help when it comes to certain aspects of the blooming disease but I am prepared to listen if you fancy a good moan.

I noticed you mentioned the QE in Birmingham. We live in Wolverhampton if it is any help.

Love Lorna x

[BellaRSParticipant]

Bloody hell! Sorry about bad words but it's the best I can say. I really feel for you two and your family. Please visit us a lot and vent all your frustration here as much as you like. Sending you lots of hugs!!!

Bella

Ps my twins are 5 now

[BADGERParticipant]

Hello Kerry

So sorry to hear about melvin what a shock for you both most of us here are over 50 so I can imagine how heart breaking it is to be diagnose under 40 you must be wondering what next we here are all at different stages and we dont give up i know you will give Melvin strength to get through this
Good luck Jo

[PerkymiteParticipant]

Hi Kerry, Welcome (?) to the site nobody really want s to be, but, we are glad we have the site and the friends and support it develops.

The real big problem with Myeloma is that in every human being it is different same basic characteristics but just about everybody reacts differently. So giving advice or encouragement can become a bit of a hit and miss affair! It never fails to amazes me how many people who where super fit are suddenly struck down. I consider myself a fit person, I used to take Physical training in the army and have always been health conscious so to speak. I always say, ? I do not mind being short and I do not mind being bald but I am bu–ered if am going to be short fat and bald!?. So I can fully see where you are coming from, regrettably, Myeloma has no boundaries, Short or tall, fat or thin it does not matter. Secondly they as yet are unaware of why people get Myeloma.

I got out of bed on the 11 Jul 2009 and my neck broke, like Melvin I was a fit busy person full of the joys of spring. Luckily, I recognised the sound of the breaking bones and quickly grabbed hold of my head and held it rigid until the arrival of the ambulance. Myeloma was diagnosed and checking my Medical records they were able to ascertain I had had it for 2 years prior to the break. Looking back at my records with hindsight and a knowledge of the symptoms you can see it but looking the other way they were just isolated incidents. I had an operation on the neck, if you look at the x-rays it looks like scaffolding around a church steeple, you cannot see a thing outside and I have full movement.

Back in 2009 My wife and I, just like you and Melvin, did not know what had hit us, nobody had even heard of Myeloma. We are now three years down the road and I am in good health. I have just been out in the garden digging up the summer flowers and planting Daffodils for the spring. There may not be any light at the end of your tunnel at the moment but I am sure you will see it in the near future.

All the very best to you and Melvin

Kind regards ? vasbyte

David

p.s. Oh by the way I am 69 – 70 in Jan!

[jmsmythParticipant]

Hi Kerry

Poor Melvin what a terrible experience he is going through (and you too). I cannot offer any advice as I have had no experience of anything like this. Kerry please come on and rant as much as you like. I'm sure there will be someone on the forum who can relate to what you are both going throug and be able to give you advice, support and encouragement.

My best wishe to you both
Love Jean x

[meganjaneParticipant]

Hello Kerry,

You have had such a lot to deal with, it is not surprising you are worrying about everything. It does seem to happen like a whirlwind with no time to take it all in. I am 38 and my husband Phil was diagnosed in May this year at the age of 43. Since the end of May he has had two operations on his legs as well as the chemo treatment and there has been so much to learn as neither of us had ever heard of Myeloma before.

I have found this forum a great support and I hope you do to. Best wishes to you and Melvin.

Megan

[PeterJamesParticipant]

David
You have spurred me on , anything you can do etc, anyway you are just a little younger than me , every little helps
Just started four days of lovely steroids, so sod it into the garden, which I really enjoy, got hundreds of daffy & tulips to plant in place of my now frosted dahlias etc, this year has been the best ever for colour, luckily all planted before I joined this club
Every time Ireland posts re failed bones I thank god I was found early before major bone damage, although my three lower Vertabrea were nailed together with steel etc when I was twenty, so they are going nowhere, but plenty of other places could give me grief
If you finish your garden early get over thote Ribble Valley, I will lend you a spade !
Peter

[Pickle2024Participant]

Hi Kerry,

I'm so sorry to hear about Melvin, its such a shock when you initially hear those words. My dad was diagnosed earlier this year after suffering excruciating back and hip pain. he has lytic lesions in his spine which showed as quite a large "hole" on the CT scan which was quite scary to see. He was also on Oramorph and zomorph but neither seemed to help with the pain. He was in hospital for 2.5 weeks before being diagnosed. They started iv bisphosphonates very early on and he had a course of radiotherapy on his back before starting 6 cycles of ctd. He now only suffers from a slight ache in his back and all his blood has improved. Unfortunately hes only been off his treatment for a week and still very weak and suffering from a few withdrawal side effects. It seems impossible to see a light at the end of the tunnel and its very scary seeing someone you love in so much pain but the treatment does work and it will get easier. Ive not long found this forum and like to hear from other people and their experiences so I know what dad is going through is "normal". Everyone seems lovely on here and I wish I found it earlier.

Hope Melvin is feeling a bit better

Nicola x

[keznmelParticipant]

Thank you all so so much for replying to me. You all seem such caring people and I look forward to getting to know each and everyone of you. I'm off to bed in a min, it's been a long day in 'my' world today and I'm so tired. We are having a Care Alert Monitor installed tomorrow..and it's 'my birthday' so need my beauty sleep – 37 years old tomorrow!!

I hope you all sleep well – speak soon and thank you so much again.

Lots of love xxxxx

[keznmelParticipant]

Thank you all so so much for replying to me. You all seem such caring people and I look forward to getting to know each and everyone of you. I'm off to bed in a min, it's been a long day in 'my' world today and I'm so tired. We are having a Care Alert Monitor installed tomorrow..and it's 'my birthday' so need my beauty sleep – 37 years old tomorrow!!

I hope you all sleep well – speak soon and thank you so much again.

Lots of love xxxxx

[tomParticipant]

Hi Kerry and Melvin

Sorry but welcome, am sure you will probally know us all by now if you have read the posts for months 😀 and feel free to pop in and Vent all you want you and melvin have like us all here been dealt a rough deal but am sure you two will whip it into submission.

Good Luck Melvin on your road to remission

Tom "Onwards and upwards" xx

[jmsmythParticipant]

Kerry happy birthday for tomorrow. I know it will be difficult but try and have a good day.
Take care
Love Jean x

[VickiParticipant]

Kerry and Melvin,

What a nightmare you two have started with. I feel humbled by what you have gone through. My partner Colin was diagnosed age 56 and had a vertebrae at t12 in his spine, damaged by this condition. It was a bxxx nightmare when we heard what he was diagnosed with, and no understanding of what the he'll it was! I've tried to understand as much as I can. Up to a point we've been lucky, if that's the right words :-), in that colin had minimal bone damage but v high light chains and pp levels of 17 to start with.

Happy to be of any help whatsoever, I am 45 and find it all very scary and being a supporter can be very tiring, both physically and emotionally. Feeling helpless but still doing all the chores etc. We thought there was no light in our tunnel but it does come, slowly. We are now 12 months later at a stage where Colin is fit for a transplant, godwilling Melvin will get there too x

Vicki and Colin x

[tomParticipant]

Hey Kerry Happy Birthday Young Lady Hope you have a good one 🙂 xxx

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