[willjames2Participant]

Hi guys,

First time on this forum so apologies if I get it wrong initially and for the lengthy post, I just wanted to share my background and some of my feelings on very recent diagnosis.

I'm 41 year old male and always been in good health, played Rugby and sports for many years up until a few years ago when my work demanded more of my time and have been in good general health. Never smoked, drunk occasionally (ahem…a little more than is recommended on Rugby Tours etc) however always considered myself to be fit and rarely suffered from any type of illness.

About 3 months ago I started with lower back pain and assumed it was a pulled muscle. I went to my GP who advised pain management (Paracetamol & Anti Inflammatory). The pain remained and I struggled on for a few weeks. I was then out walking the Dog one morning and I sneezed massively and heard my back crack and had a massive muscle spasm of which I had never felt before (it was excruciating). This scared me so I went to A&E (because it was a Sunday) they examined me and said I had no other symptoms did basic reflex tests ad sensitivity tests on my feet and legs etc and sent me on my way. Following this I saw another Doctor and a Physio twice in order to try and free my 'pulled muscle'.

I was still working and we were due to go on holiday to Menorca on 13th Aug. The week leading up to going on Holiday I seemed to be making some progress I had not had a back spasm for a week and I was getting more mobile however everything I did was still at snails pace. Physio suggested the Sun and the buoyancy of the water may aid my recovery.

We went away and I really struggled, Kids (Alice and Will) were great and they really enjoyed themselves however my back issue was really grinding me down with me confined to minor sporadic sessions sat in a chair at the poolside and most of the time sat in our apartment feeling sorry for myself whilst my Wife flitted in between me and the Kids trying to make sure everything was ok. Towards the end of the holiday I collapsed with back pain and taken to a Menorcan Clinic where I spent 3 nights and had the following tests – 3 x CT scans, 1 x Chest X Ray, 1 x Pelvis X Ray an MRI Scan and an Ultrasound on my Testicles (all within one day) my back was creasing me with constant lifting on off spinal boards and stretchers etc.

After the tests they thought it could be Chordoma however weren't sure they only knew they couldn't treat it so they had to get me home. I was air lifted home on Saturday 24th Aug from Mahon (an experience I would never wish to repeat – although the Air Doctors were brilliant) to Tameside Hospital and then moved to Manchester Royal Infirmary on Wednesday 28th. I was told the day before that it may be Myeloma, after they had took Bone Marrow from my left hip (oouuucchh!!!) and the bloods etc were confirmed. Whilst at Manchester Royal I met with Dr Simon Gibbs and some of the Specialist Nurses (Sarah Kirk and Amy Sincola) who were brilliant.

I came home on Friday 29th Aug and returned to Clinic at MRI on Monday 2nd Sept for my Chemo Meds and I have started my treatment (CTD) 3 week cycle.

It's been a real whirlwind couple of weeks from having no other symptoms apart from my bad back (which I thought was muscular pain) to finding out my back pain was due to fractured vertebrae in my lower back (which probably occurred when I sneezed weeks ago) to being diagnosed with Myeloma.

My emotions were all over the place to say the least and we spent the first few days sobbing as a family and I was getting upset more at my friends and family being upset than for my own situation. Everyone has been fantastic though and I feel truly humbled at the point that people will help and put themselves out when I am in need. My Wife is superb and has hardly left side since we have been home, she is my rock whom I love dearly and shudder to think how I would cope without her.

I even have had a visiting from Chris Pugh (a friend of the family whom I used to play Rugby with years ago) who i just this week found out has the same condition. Chris is an avid Fundraiser for the site and was a real inspiration when he came to see me the other day.

Well that's enough for now, sorry for going on I feel I have so much to say and look forward to being part of this community going forward and when I'm mobile enough I will be contributing to ensure that that this brilliant resource and charity continues on in its purpose to help Myeloma sufferers.

Thanks for listening and any comments would be most welcome.

Kind Regards

Scott 🙂

[EttaParticipant]

Firstly welcome Scott sorry you have had to join our forum but we are all a grand bunch on here.
I am typing one handed at the moment as just had my shoulder operated on Monday so might be spelling mistakes.
This site will help you and your wife with most questions you have. Hope all goes well for you regards Etta .

[eveParticipant]

Hi Scott

Just a small welcome,:-P :-0 😐 🙂 🙂

Some people do not look in on the under 50 site so 2 things.
Apply to join the under 50 scroll down,and you will see who to apply too,then on bad days you can,really let rip,it's a private site not open to general public ,saying that,we want to hear how you get on as well!!!:-S .So if you go to Newcomers,more people will see it.

My husband is older but was very fit RM for 22 years, he is 2 1/2 years on this roller coaster ,it does not matter what age you are,it's an awful disease .
Will leave space,so people can welcome you,!!! Eve

[willjames2Participant]

Eve,

Thanks for the information, will do. I'll post to let people know how I am getting on and also check on how my new fellow members are progressing.

Hoping everything is going well for you and your Hubby.

Kind Regards

Scott:-)

[willjames2Participant]

Etta,

Thanks for the welcome. I hope your Shoulder is better soon and you will be back to typing like a gooden in no time.

Kind Regards

Scott:-)

[onlymeParticipant]

Scott, firstly sorry you have joined this group…. I just want to wish you well.. Stay positive and upbeat.. This forum is a lovely supportive group of people who will be there to offer words of encouragement and advice wherever possible..
I was a carer to my beautiful Mum, who had a very rare complication of Myeloma… I gained the support when the going got tough and the words of wisdom and encouragement helped me through it all…. I will never forget how words helped me through the good and the bad… Sadly my Mum isn't here anymore, but it doesn't stop me being touched by everyone going through this awful disease and united we must stand together, to help each other..
Don't be afraid to ask anything or voice any of your feelings as you will probably find others in same boat as yourself…
Good luck and keep us posted of your journey…

Angie x

[willjames2Participant]

Angie,

Thanks for taking time to reply. All words of encouragement are welcome at the moment at this vulnerable time. Sorry to hear about your Mum. But at least you are still affected enough to actively contribute to the site and support others who are still affected by Myeloma which is brilliant.

Thanks again

Scott 🙂

[dickbParticipant]

Well, now you are with us time to make full use of all the facilities of this exclusive group. As I am sure you will here often, everyone's MM is different, we are all affected in different ways with different problems, be it with the illness or in our private lives. However, it has to be something really unique for there not to be someone with some experience or knowledge that can help.

The emotions and the crying will stop, I think for us it was at least 2 months. As you've found out, there are people you wouldn't have thought of who will come out and help when they can, a number will be there for you and your family in the long run. Your wife sounds fantastic but please remember that while she is not suffering fom MM, she will be feeling and she will have her own fears and worries to deal with. You need to support each other. I would be totally dead in the water if it wasn't for mine but I am conscious she is no wonder woman. So enough of the rambling, we are all here with the experience to help when you need it.

[willjames2Participant]

Hi Dick,

Thanks for the reply. You are so right in the consideration I have to have for my Wife and close family who we are relying on so much a the moment to assist us. They too have to live with the illness and I'm sure when I'm not in earshot my Wife will cry and get upset but she remains as strong as possible whilst I'm there. Having saying that, just this week she bumped into an old friend at the Supermarket and broke down telling her when her friend asked how we all were, but this will ease with time as you said.

Hope all is well with you and yours.

Thanks, Scott:-)

[dickbParticipant]

Morning Scott,

Wives are brilliant at putting on a brave face being organised and managing things, look how many wives are posting on the website. But we also have to be there for them even though they may think that we are incapable because of our condition.

How are you handling the children? They obviously know something is wrong but how do they express their feelings? What age are they? We tell are daughter on a 'need to know basis'. We want her to have a normal childhood and not grow up thinking regular visits to the onkologist or hospital is the norm.

Anyway your with us now so time to get going. Tom's mantra is 'Onwards and upwards', mine is 'Pick yourself up, dust yourself down and move on' As a rugby player it's something I'm sure you've done many a time on the pitch.

[willjames2Participant]

Dick,

My Kids have been great. My Son is 12 and Daughter is 15. They are good kids and are quite mature for their age (especially my Son) and we decided to tell them from the outset thinking it was better coming from us than them finding out on the grapevine in our small town that there Dad was ill. However they don't know the full 'ins and outs' of the details etc. They know I'm not well, that we will have rough times however we are trying to remain positive. We want their lives to be as normal as possible. As you said we'll fill them in on on detail as time goes by so they can absorb little by little.

I'm off to hospital this morning for a quick check up after being on my CTD for 4 days so I'll check back later…got me thinking now though, I too need a 'mantra' so I best get my thinking cap on for something that is apt for me and my life experiences.

Thanks, Scott.

[wendyduffieldParticipant]

Hi Scott

What a rollercoaster you have been on. Sorry that you've had to find your way to this forum but I am sure you find it helpful. I hope you get the link into the under 50's group too. Just wanted to say hope your first cycle of CDT goes ok. I am also being treated at the MRI, they are a great haematology team and you are in good hands. I will look out for you when I'm next there and say hello.

All the best

Wendy

[willjames2Participant]

Wendy,

Thanks for the post. Yes, the team at MRI are superb and I'm due back in two weeks which will coincide with the end of my first cycle. Also on TEAMM trial for antibiotics or placebo (not sure which) but its all good. I'll sign up for anything me!

I'll look out for you when I'm in clinic.

Cheers

Scott 🙂

[GlobalagogogoParticipant]

Hello Scott!

Got your details via Martin and thought I`d register to better understand your curerent plight mate.

Good to see your being positive and focused – thats the way!!

Keep in touch, stay strong and as Churchill said `never, never, never, never give in`…

All the best

Mark 😉

[willjames2Participant]

Mark,

Thanks mate, appreciate the bulldog spirit and will keep in touch.

Cheers

Scott:-)

[Author]

Posts