Hi All,
I hope it doesn't come across that I am decrying people's contributions, far from it. I understand just how easy it would be for me to withdraw quietly and fight my corner… with Janet and those I love beside and behind me.
The MUK discussion forum is just that… a forum… it doesn't say which direction the forum should take or what kind of community builds up around it, it allows us to determine that for ourselves.8-)
I imagine that the persona of the forum will change several times over the years… from informative and supportive , to familiar and free… and back again, depending on the current incumbents.
There are still a few of us here who remember the old board. That was informative, friendly and fairly free, without ever having that familiar close-knit felling of the past 18 months or so. But I was so grateful to find it… to latch on to Stephen and Gill as they approached and then took on the dreaded SCT procedure. But they (Gill) kept a blog… a blow-by-blow account of the procedure, complete with tips and techniques. They, and our lovely friend Gaye, made the place (the forum) accessible and friendly… far more than just a forum. 🙂
It was a time and a place… just right for me and I gladly jumped on their coat-tails. They are the reason I stayed… the presence of people displaying the openness of friends… to strangers.8-)
Perhaps that is all we need… kindness, openness and the human face… whose face doesn't really matter. I will rely on the fact that the worst kind of condition, terminal illness and all that comes with it, brings some people to the fore… with a willingness to fight corners, inform those just behind and raise questions that helps us all deal with a hand we never expected or asked to play.:-|
In the meantime I will enjoy the closeness of my friends (bugger cyber) for as long as I can… and hope that our friendship draws them in to stay awhile… and perhaps take up the mantle when we move on.:-)
Dai.
[i][b]' hello to everyone & jean who i have spoken to.
I'm stephen im 47 years old. We have 2 kids joe who is 24 & jade who is 17. I'm writing this now & I'm crying like a baby. My wife dawn had al amyloidosis myeloma.she was diagnosed in aug 2010.sadly she passed away on 29/01/12. She was trying to be so strong, she was so very brave… for the last 18 months of her life my mother-in-law would look after dawn while i was at work. i was usally home about 1pm then i would care for dawn etc until i went to work at 5am the next morning. My work have been amazing.they helped me so much. Me & my son work for spar, i drive the lorries, my son in the warehouse. To cut a long story short my son & 3 other friends walked 54 miles to raise money for myeloma uk.joe & with the help of spar shops raised over £4000. Dawns funeral was on the 8th Feb, that raised over £400. i havent got the exact amount yet, Im waiting for the funeral directors to tell me. Please excuse my grammar. I'm rubbish at writing. i probably could write a book on whats gone on in my life since Aug 2010. We had alot of good times & a few bad times too. i hope my 1st message wasnt too boring. God bless my dawn. i have read many of your messages on this site; my thoughts are with you all & i wish you all well.
best wishes
stephe[/i]n' [/b]
Hi Stephen,
Don't worry about grammar, your words say everything we need to know… about you, your kids and your lovely Dawn. What comes across most to me is your love for Dawn, your love for your family and that terrible sense of powerlessness over the disease and the devastation it has brought to you and yours.
I wish you and Joe and Jade the strength to carry on with life in the way that Dawn would have wanted for you… and the togetherness that will pull you all through.
Regards
Dai.
Hi Mavis,
As Tom says, you are definitely going through the wars… but if they can sort you out and get you going forward then all well and good. 😎
Keep us posted and chin up.:-)
Dai.
Hi Ian,
I first encountered PN with my frontline treatment CDT.. the 'T' being Thalidomide.. but it only really became a problem when I was on Velcade… where as well as galloping PN I also developed a DVT complete with legs like an elephant and badly swollen ankles. I am now on Revlimid (2nd Cycle) and I am wary but my consultant told me that Revlimid does not usually cause DVT/PN problems and so far, so good.
As Eve says, swollen ankles are usually a sign of water retention and there are tablets you can take to resolve the issue. As for PN, it depends how bad it is… mine is there 24/7 but not as bad as under Velcade. I am on Clexane (40mg) as a maintenance for my DVT.
Dai.
Hi Helen & Jo.
Thank you for your support… I was wondering the same thing Helen, that I could have fractured it by over-stretching etc., although I can't remember any particular occasion where I might have done so.
I was sent by my haematologist consultant to see an orthopaedic consultant at the Queen's Medical Centre, Nottingham… not long after I was first diagnosed at the Nottingham City Hospital in June, 2009. The consultant reviewed my case and agreed that I needed pins in both upper arms, bottom left and my femur… (the femur being the most urgent as it was load bearing). It was agreed to wait until I had recovered from my SCT… but my SCT failed after 10 months and there has been no word since (although we have been busy with other treatments etc.
I am told that I have extensive bone damage but I have only ever had Bonefos for my bones. I have heard of Zometa and other treatments but they have never been discussed as an option. The orthopaedic consultant told me I had to take care because the lack of marrow in my bones meant that I could easily cause stress fractures etc… but again, no word of support or treatments.
I will discuss it with my lead nurse on Tuesday… if the indications are that Rev & Dex are still on track then I will push hard for causality of my shoulder damage… and get my skeletal position reviewed while I am at it.
Yes Jo… the fact that paracetamol seems to ease the problem tends me to be cautiously optimistic that the damage, inflammation etc., is either not mm related or it is residual.
We will see.;-)
Dai.
Hi Bridget & Tom,
Thank you for your encouraging words… I have sort of convinced myself that it is 'normal' damage… or that if it is by way of mm disease, that the pain is due to the residual damage caused by the disease which has now been dealt with by R&D.:-)
Otherwise I feel okay… good appetite, PN bearable, look okay… ah, yes…
Janet brought me breakfast in bed this morning… with the plan to eat, take my medication and go back to sleep… because I didn't drop off until 6 am …ish, after a 'live' night. 😐
I said 'Amitryptiline 2 Dex 1… but when I went to take my medication (which I sort and check into a small ramekin) I found last night's Amitryptiline tablet nestling in the bottom of the ramekin… looking small and lonely and wanting to know why I didn't take it with the 'big boys.;-)
Its not the first time (and I don't suppose the last) that I have missed medication… of course, now that I'm on oral treatment I take much more care but I have missed complete doses… usually the morning doses and I only realise several hours later when I have flu-like withdrawal symptoms… quite bad at that and after only one missed dose.:-/
So, back on track tonight but I'll have to suffer through today because after breakfast Dex decided to kick in and I'm buzzing… but all the Dex signs are there for the telling.
Hey ho… silly billy.:-D
Dai.
Hi Eve,
Its either amazing, or an amazing coincidence… but 2 nights of one small dose Amitryptiline and 2 nights of at least 6 hours solid sleep… sans sweats and directly on the back of a Dexday tm…. I'm impressed and hoping for more of the same. I have woke early both days (6ish) and stayed awake but so much more refreshed than with the sleeping tablets.:-)
So far so good.8-)
Dai.
[quote] I feel that we are dealing with our loss really well although we still have our crying days, as we call them. Mum fought myeloma every day and we are very proud of how she dealt with it.
We go to the crem and put flowers down(especially roses, mums favourite) and we have now started to remember the good times before mum was ill and this helps us immensely.[/quote]
Hi Gina,
Its lovely to hear from you… and I am so glad that, however slowly, your memories are turning to the times and the person your lovely Mum was, before the dreadful intrusion of MM into your lives.:-|
I have no doubt that there will be more 'crying days' but I hope that they will soon be balanced out, tears of sorrow and tears of joy in equal measure… and then one day the tears of joy and love and memories of the silly, trivial things… that you can only identify with your Mum, become the norm.:-)
My father was the last significant loss in our family and that was back in 1987… luckily for us, nearly all my brothers and sisters (excepting one who was yet to be discovered… another story) stayed over on the night of the funeral. Because of the distances involved there had not been a wake… something I think my Dad would have encouraged)… so when I got home I had a call from my cousin asking me if I fancied going to a quiz that night… at first it was the last thing I wanted to do… but he had travelled all the way to Mansfield from Swansea… and he was a quiz setter at a semi-professional level… so I thought why not? Before we knew it phones were ringing everywhere and we entered three teams of six… a sombre mood soon turned silly and not just because of alcohol, although that obviously helped but because we were together, sharing our loss while having fun… despite ourselves and we began associating the questions with the mannerisms and sayings of our Dad. It helped us that night… and gave us a foundation for future conversations… it would have been so, so easy to drift away to lick our wounds as individuals, to avoid each other by excuse of distance etc., but that night had helped us and drew us together in a most unexpected way.:-D
I still miss my Dad… but now I see him every day, I just have to look in the mirror. More so because I am being treated in the same hospital, City, Nottingham, where he was treated thirty years to twenty-five years ago… so those eyes reflected back at me now fully understand what he was going through… as well as the spitting image.8-)
Please keep in touch, do… but don't let our news and treatments etc., drag you down. Visit our 'End of Life & Grief' section… share your feeling and experience there, with others who are having similar experiences to you (you might want to re-post your entry above) but either way, it is so good to hear from you.:-D
Take care and best regards to you and yours.:-)
Dai.
Hi Neelie,
Where is here? What's your Dad's name and where is he being treated?
Being nosey.:-D
Dai.
[quote]Am I pushing myself. [/quote]
In a nutshell, unless you are some sort of wonderwoman? Yes, bigtime.:-) 🙁 :-0
You may get away with it but if you body is suffering, including joint pain, then it is you causing the problems, not your body.:-P
Look at it this way Kay… during your SCT your body's capability to produce stem cells, your life giving stem cells, was shut down… completely and utterly. During the procedure your body was running on batteries until the re-introduced stem cells from your harvest cloyed to your bones and started bonding, binding and reproducing… then, when your body showed the magic 0.5… proof positive that your cells had taken, you were sent home to make the slow, I repeat, slow, process of building up to a point where you and your stem cells were in harmony.8-)
Here's the main point… you remain Kay, a full grown woman with a body that wants to get on with life… while your stem cells are babies. They may have gained in numbers but they have yet to mature… they are not even teenagers yet in the recovery process… they, at best, are eight to ten year olds… yet you are pushing them as if they were thirty plus… and you wonder why they are complaining?:-0
Like all children they complain by moaning… by giving you joint pain. And your answer? Kick them into submission with steroids.:'-(
This is where the medics fail us… they send us away with instructions and expect us to follow them to the 'T'. When you went back in with your joint pain they should have looked at where you were, asked what your lifestyle was and then… well they wouldn't but they would have done much better by you to have laughed at you and ask what do you expect. But they being medics went for the option of scans and steroids etc because they thought it was possibly PN… but somebody somewhere should have asked the simple questions… and nipped it in the bud.:-(
But that's just my 2p… but I would bet everything that I own that I am right.:-D
At seven months post SCT you will probably get away with it… but you didn't start your wonderwoman antics at seven months… more likely at five or even earlier… well your body was lying to you… plain and simple… everything was in place except for your pre-juvenile stem cells… bless them.:-S
I do understand your eagerness to be normal but come on Kay… give the little miracle workers a fighting chance.;-)
Dai.
Hi Neelie,
The positive is that your Dad is now in the right place with the right people to take care of him… and they should have been doing so for a long time before this. It makes their job a little harder (having to plot exactly where your Dad is with his mm and the appropriate treatment to bring it under control) and your Dad had to put up with a lot of unnecessary suffering… all because of the ignorance (understandable) and the unwillingness to investigate (unacceptable) of your Dad's GP.
As you can read, that is not an unusual pattern with most GP's who encounter the early stages of MM. They assume hat their patient is suffering from stock problems and treat accordingly… but alarm bells should be ringing when it perseveres. But no… if it doesn't fit then they turn to the next stock problem and proceed.
My GP was also a friend (musically) and he suffers from a bad back… so I had his version of sympathy and he treated me accordingly… even when I was sleeping upright in a chair for the best part of two months. Eventually it got so bad, with back spasms that I wouldn't wish on any person in the world, that he sent me for a scan, where I was diagnosed with secondary bone cancer (tumour on my spine, crushing 2 vertebrae onto my spinal cord). But he only sent me after I had collapsed onto the floor and couldn't get up and ended up in casualty… where a wonderful young asian doctor gave me morphine and admitted me for tests… the senior nurse told my wife that they would wait until they got me in the ward, get me examined by a 'proper doctor' and then send me home with some decent painkillers… I ended up in hospital for four days… I had none of the tests suggested by the young doctor (including an MRI) and Janet, my wife, had to cut me out of my clothes after two days… they just fed me pain killers and had two physios barking at me to get up and move around… well, there's nothing new here… I was sent home two days later… where my GP sent in a chiropractor… who saved my life.8-)
The chiropractor got me to lay on the bed and he examined my spine… and refused to treat… he got me a decent pair of crutches and a Zimmer and visited my GP at his home. Two days later I had my MRI and the rest is history. I was saved by what some people refer to as a quack… and an expensive piece of technology… the medics had their chances and failed me miserably… as they did your Dad.:-(
My back story (no pun intended – but its a good one:-D ) your Dad's story and several others here, are the negatives… the positives start right now for your Dad… look at Jo (Badger) and others with horrendous tales that meant they wee in deep… in bad trouble when diagnosed… wherever, whatever, they are still here… they survived the indifference and the problems caused by that indifference… the medics found the root of the problem, found a suitable course of treatment and they were under the wing.8-)
As will be your Dad. So speak to him… get him to agree that you will never forget (how can you) but the positives (however unlikely that may seem) start here. Being positive is the key… my mantra was 'Whatever It Takes' (Tom's 'Onwards and Upwards' and David's 'Vasbyte', South African for 'Bite Hard')… which they still maintain to this day.:-)
Your Dad needs to focus on getting much, much better than he is right now… and that will happen… but he must be positive and concentrate on doing that… you have to create a positive aura at home… don't allow negativity to cross the threshold… even when it is disguised as loving concern… only allow conversations about his treatment and plans for getting him to his Stem Cell Transplant and the remission beyond… but that is to come… for now breathe.. take in what the medics are saying and look after your Dad… with love and positivity and the determination to surround him with nothing but the same.8-)
With best regards to you, yours and especially your Dad.
Dai.
Hi Sarah,
Tell Henry to take it slowly, to take it one-day-at-a-time, to take it easy… but to take it.8-)
Before you both know he will be up to speed… just in time for the Olympics.:-D
Dai.
BTW – his 2 bags now, 2 later deal keeps my genuine 'World Record' nice and safe. (14 Bags for 2.1 million cells). 🙂
Hi Fiona,
Thank you for picking up on the thread… I have copied your reply to Becky and I will be speaking (Skyping) with her tomorrow. Its her baby and I believe it will do her good to take the lead on this… I'll advise and sort out the entertainments and press releases etc.8-)
I will pass on all the relevant contact details tomorrow… so you can expect a call in the next few days.
Again, many thanks for your support.:-)
Dai.
Hi Eve,
Like Slim I would love to cut back on the Morphine but I struggle with keeping the pain at bay as it is… so I'm legal too… but I'm convinced that the morphine is responsible for as much harm as it does good… especially after nearly 4 years of constant intake.>:-(
I have checked the Amitryptiline and its sell-by date is 02/13 so I'll start tonight. 3 hours last night and about the same dozing this morning… so I feel almost human now.;-)
I think that social networking is fine in small doses… its great for catching up instantly… but like all new fads I can't help but wonder what we would be doing if we weren't doing this.:-|
I won't be bothering anyone, I use fb like a pigeon hole at college… but it is good to know it is there if you need it. But I have family and younger friends who seem to live on fb and Twitter… before that it was Friends Re-united and other such sites… people are desperate to communicate but don't know (or haven't the skills) what to say. When I see rational people getting outraged and upset over trivia… well, I feel outraged… but choose not to say so.:-D
Dai.
Hi Eve,
My GP gave me some Amytriptiline for my PN last year but I didn't fancy taking an anti-depressant (albeit a very small dose) I still have the packet, unopened… I'll check the sell-by date and if they are still 'live; I'll try them.
You can't beat a personal recommendation.:-D
Dai.
