[bikerchrisParticipant]

Hi everyone, thought I had better add a blog as I have been lazy and not been on line recently, hope everyone has enjoyed the sunshine!
My treatment at the Beacon Centre in Taunton has settled down to a monthly review and blood test, except for a few days in Hospital when I picked up an infection and ended up with a high temperature so they kept me in a general ward for 3 days. What a nightmare! No chance of sleeping with the other inmates snoring and coughing, the bloke in the next bed had pneumonia, not his fault, but I was worried about catching something even worse than I had! After even more tests and scans, including a chest scan where they inject you with an infusion while they scan – very weird feeling, they finally let me go home to normality, and real food. It was nice to have a rest but I found it makes you very lethargic in hospital just watching 'Homes under the Hammer' and waiting for the next awful meal.
I have completed 3 cycles of the CTD now, and my PP level has reduced from 55 to the most recent at 23. They want to get me as close to 0 as possible, so the previous mention of a stem cell transplant at Easter was too optimistic, but it may be in the early summer before I am ready for that.
In the meantime some good news on the finances! I got a Blue Badge which saves on the hassle and cost of parking, and some Disability allowance (well earned after filling in the endless repetitive form), and I am battling with L&V over an income protection insurance policy payment. They want to know the ins and outs of everything, you wouldn't believe that I had actually paid premiums for this policy, talk about 'blood out of a stone'! I am determined to screw as much as I can from everyone given that I am very unlikely to receive any State Pension, so why not?
I am feeling pretty good in myself, decent appetite, and not too much back pain unless I go silly on lifting stuff, still on the Oxtcontin twice a day, with a few top-ups if I need it. If I overdo it I do suffer, so the odd day in bed is called for. I have an adjustable back rest in bed so I can sleep propped up as it hurts me to lay down flat, it works well now that I have got used to it.
The other good news is that Lena and I are getting married in May, so we are really excited about our big day! It will be at St Audries, a lovely country house near Taunton. We decided to go for it while I am feeling ok, and before my SCT as I may take a while to recover. Its lovely to have something happy and positive to look forward to.
Good luck everyone, and keep happy and positive!
Chris.

[brochoParticipant]

Hi Chris great to hear things are going well Congratulations for your wedding, at least you should have some sunshine , you are so right it really helps to have something good to look forward to. Good luck wth the insurance company the older I get the more I think they are a bunch of crooks!! Stay well and happy Bridget

[tomParticipant]

Hi Chris

Pleased you are doing good (well as good as we can be) The blue badge is a godsend saves you money and park nearer to where you need to be (cept in Scunthope General Hospital).

I tried to get something from the State and all I got was £63 per week and when I went back to work after a few months I got told by tax man I owed them money:-S and that added up to what sickness beafit I got :-/ dont know why they gave me it?

And as for the wedding dont forget to post Photo's

Stay fit and stay strong

Tom "Onwards and Upwards"

[HelenParticipant]

Hi Chris
Good to hear your stay in hospital was short and treatment progresses, look forward to seeing the wedding photos
Helen

[eveParticipant]

Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.

Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in ITU,just sorry we did not do it before.Just remember to change your wills they become invalid when you marry.

I think it is so wrong to put cancer patients on a general ward,as you say,there is more chance of you picking up other infections,from ITU Slim was put on a general ward for 10 days,the only way I can describe it was hell,I was so glad to get him home, at least you had a telly to watch.

I agree completely with your thoughts,on benefits,so many people do not claim what they are entitled too,and they do make a difference,took me a long time to get Slim to claim,he gets attendance allowance,found out the other day I could get carers allowance,they just make everything so dam hard.

One thing Myeloma does,is make you,make the most of each day,Eve.

[PerkymiteParticipant]

Hi Chris, Firstly congratulations on the pending nuptials, as Eve says you take a different perspective when you get something like Myeloma!

I know what you mean about hospitals and infections I have been suffering with a really bad cough and cold, my temperature got up to 82 and Mo telephoned the Beacon Centre to check. They confirmed my bloods were good enough to fight the infection and I must say I felt some relief that I did not have to spend a night in Hospital, nothing against Musgrove Park, in fact quite the opposite, but you sometimes end up worse than you started!

I totally agree with you about getting EVERYTHING you are entitled too. I am in receipt of my pension but it really annoys me that ?they? are going to get it back, even more so when I see the cuts that they have made to the SERPS (additional pension) that I have paid in for all my life. Originally when SERPS started my wife inherited my contributions but various shades of Government have whittled that away and she now receives less than half I think it is now, bloody robbery.

Kindest regards ? Vasbyte

David

[mhnevillParticipant]

Hi Chris

Good to hear from you. Glad PP levels are going down steadily.

What lovely news about your forthcoming wedding. I'm sure it will be a very special day and brting some well needed normality into your life to put against the invsion of the dreaded MM.

I'm not going to put any bets on you not getting to pension age though! You were very fit before diagnosis, and are responding to first line treatment, and there are so many more in the pipe line. Mind you, the way Governments are whittling away at pensions, and increasing pension age, evantually there may be no retiremant age at all – just enndless DLA like booklets to fill in to collect anything!!!!!!!

Hope everythting goes smoothly till May with no more hospital visits. And yes, don't forget the photos – we need cause to share celebrations on this site.

All best wishes to you and to you both!

Mavis

[DaiCroParticipant]

Hi Chris,

I'm glad to see that your pp's are dropping steadily… the more i see and hear about mm the more convinced I am in the 'sure but steady' aspect of treatment and response. In America the medics seem to follow the 'little but often' approach and they are getting much, much better results than us… + they are also not slaves to the magic and mystery surrounding stem cell transplants.. usually treating the patient according to what might work best for them… and not act as slaves to the equivalent of NICE (our funding bodies which also dictate our treatments).

I must admit that the drugs in the pipeline, coupled with the 'less is more' approach, fill me with the hope that MM will soon be downgraded to 'Chronic' from 'Terminal'… perhaps a little too late for the likes of me but you are young and fit and full of vim and vigour… so 10 years + should be a reasonable target the way things are going.

I do hope so and I wish you all the best for the wedding and all your joys to come.:-)

DAI.

[BADGERParticipant]

hi Chris

glad you are doing well and your PPs are coming down all be it slowly congratulations on your forth coming wedding I know St Audries its a lovely place:-) I hope you have a wonderful day Keep well and strong
Love Jo x

[OutdoorsPaulParticipant]

Hi chris
I have not replied to a post of yours yet but must say "congrats" for the up and coming wedding good to hear some real good news.
cheers Paul

[shirleyParticipant]

Hi Chris,my congratulations to you & Lena on your forthcoming marriage,. Good to hear your doing well and that your pp's are coming down,and hopefully you get to have SCT,take care and best wishes Shirls 🙂

[eveParticipant]

Hi Shirley
Just replied to a post on treatment you might be able to answer a few questions???? sorry to put this on you .Eve

[ElizellenParticipant]

How did I miss this post last time I logged on!?!

Many congratulations on your forthcoming wedding, Chris and Lena!!

And my wishes for an uneventful journey towards your SCT and beyond.

Eliz
XX
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[DebsParticipant]

Good luck Chris and Lena!

Sounds like you've got an exciting time ahead of you 🙂

Take care
Debs x

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