Hi Christine,
As you are finding out this forum hosts people from all backgrounds and all ages… the youngest being about 32 and the eldest about 83. You will also find a wide range of experiences with MM on board too… with some people, like Carol, just barely ahead of you and people like me who has run out of metal roads and is trusting to dirt tracks and invention. 🙂
We are all here for similar purposes, to support and be supported… to help and be helped… to offer cyber hands and to receive the same back… with friendship, camaraderie and our own kind of love. 😎
For love it most certainly is. 😀
Welcome. 😎
Dai.
Hi Maureen,
Yes, it is one of mine… written on the day of the first funerals.
Andy and Jamie Murray would have been at school that day… about 8 and 7 ish, so in a higher class. They never seem to mention the massacre of their younger schoolmates other than occasional references to 'that day'… but it must always be there somewhere, in the backs of their minds… buried deep and perhaps that is the only way they can cope with it… mind you, it is the same with the media and the UK population as a whole… buried deep… in company with Hungerford and other gun related massacres… events beyond our normal understanding. 🙁
Anyway…
Best wishes
Dai.
Hi Maureen,
Your post also reminded me of another poem… based on perhaps one of the saddest events of my lifetime and set in Dunblane.
[quote]She's modest as any, she's blythe and she's bonny
And guiless simplicity marks her its own
There'll ne'er be a villain divested of feeling
Who'd blight in it's blossom, the Flower of Dunblane.
[i][b] Jessie: The Flower of Dunblane – Maver's Genuine Scottish Melodies [/i][/b] [/quote]
[b]The Flowers of Dunblane[/b]
But he came – this villain divested of feeling
And he blighted in blossom the Flowers of Dunblane
Small green buds in the hands of a grim reaper
And he scythed them down without pause for pity
In a safe haven built for sincere and gentle tumbling
The wide world's compassion cannot reach
To teach them that this is not the way of humanity
Wretched as we may seem, outside of familiar circles
Bogey Men and soft voiced, sweet bearing molesters
Preying in the shades and outskirts of sanctuaries
And I cannot kneel down even at an arms length
To hold hands and promise a world of gentle nurture
To show that a stranger's face can be worthy of trusting
Because I dare not and I cannot and I know in truth
I would be first to tell them so, from an adult safe distance
Because he came, that indurate villain divested of feeling
The exception to every rule, that damns us all forever
He had a licence for his scythe and a callus for a heart
With his feelings locked tighter than his trigger finger
While he blighted in blossom the Flowers of Dunblane
[b]Dai.[/b]
Hi Maureen,
I am so glad you had such a good day, the 'free bar' and copious amounts of champagne notwithstandinding. 😀
Do you have a copy of the poem 'Love'? I wrote one for mine and Janet's Wedding which I also read out at my step-daughter's Wedding by request… it is called 'You Are My Bower'.
[b]You Are My Bower[/b]
You are my bower, my summerhouse laden with favourite flowers
Scented and lovely – pastels and bright blazes, all petals and peace
When the sun is high, fierce and unforgiving and beating on my brow
It is to you I turn for shade and shelter, for cooling comfort and repose
At the tide of autumn, you are my harvest home, my house of leaves
Russet and golden, supple boughs bending to offer fruits and fragrance
When the sun is setting and the owl's light brings in the chill of evening
It is to you I turn for wine and the lingering rose of my Indian summer
When winter comes howling, you are my hearthstone, my home, my harbour
Drawn together, wrapped in Yuletide contentment and cozy consolation
When the sun sleeps or skims the surface, fooling neither bud nor blossom
It is to you that I turn for inspiration, spurning fears and easy hibernation
And when times springs the eternal promise, all shyness and birdsong
Youthful and dancing, radiant and racing, blood rushed and star rising
When the sun seeps into my heart and bones and sends me leaping and fervent
It is to you that I turn for smiles and approval and signs of loving confirmation
Equinox and solstice twinned, seasoned summers, autumns, winters and springs
All may come and pass our way, revolving around this, our hallowed world
So whether the sun is high, setting, sleeping or seeping, this I know full and well
It is to you that I turn to share my love and love you now I do and always will.
[b]Dai.[/b]
[quote][b]Anyone else with iga lambda and failed CTD?[[/b]/quote]
Whoa! Back up a little there Carol. Are you really expecting us to believe that your CDT treatment has failed after just 3 weeks? It seems to me that your readings are just about normal for such an early stage. I wouldn't begin to worry about early indications until after at least 3 full Cycles. 🙂
I do understand your frustrations and your desire to get home to your family in Australia, where I understand they have a pretty well established MM programme (conversely my Consultant is from Western Australia… and an excellent Consultant she is too). 😎
[quote] [b] I reckon of the 21 day cycle I have around 11 OK days and 10 not so good. [/b] [/quote]
At this early stage a 50/50 ratio of good/bad days is pretty good, especially where chemotherapy (Cyclophosphamide) is involved. Once your CDT course is over and you have that hiatus between frontline treatment and pre-SCT procedures, you will feel the benefit of the rough early days by feeling pretty good. 🙂
Of course your aim should be to gain your SCT and get recovered sufficiently enough to be able to take up your bed and move back to Australia.
[quote] [b]The consultant at Ealing advised me against (switching to PADIMAC) saying most people respond to CTD and it s easier than the Velcade route[/b] [/quote]
And IMHO he is right. I wish you well but I would urge you to be guided by your present consultant re: CTD and PADIMAC. For one, it would mean starting again… and there is no way you will be able to withdraw or dictate to a trial. A full 6 to 8 Cycles on PADIMAC + at least 2 Cycles of CDT would delay your SCT and use up your Velcade option… which could well be a vital ingredient in future treatments. 😐
If you were reporting in after 3 Cycles of CDT I could understand your concerns (given that you had any to report that is). But until then I would advise gritting your teeth, enjoy the comparative ease of your 50/50 ratio and give CDT its chance to work. 😎
All the best.
Dai.
Hi Gill,
[quote] [i][b] I suppose this has been the end of a chapter in my grief although I cannot imagine the pain ever going. I did feel good managing to do the journey and coping. Something Stephen always said I was capable of.[/i][/b] [/quote]
Rather than seeing your grief as an end of a chapter, cannot you imagine it as the beginning of a new story? A story where you collect, select and then collate your favourite and therefore most painful chapters of life with Stephen. Perhaps you can live them out, where appropriate and then choose methods to end each chapter with a positive action, as in this particular case. 🙂
The reason I don't see this chapter as an ending, is due to Stephen now residing in "La Maison du Puits"… or at least in one of its fields nearby. You now have something to draw you back… many times over many years. I can imagine Crystelle moving the sheep for each first day… to allow you some Wellie clad privacy, for smalltalk conversations and hopefully, ever decreasing heartbreaks. Its allowed… you can allow yourself many things at "La Maison du Puits"… small, big and extremely large, if you so wish. 🙂
You can take into consideration any thoughts that Stephen might have voiced or thought aloud… but ultimately it is down to you. Put on your Wellies, walk through your field and tell him what you have decided if you so wish… but each and every decision… upon every single action, small, big or extremely large… will be yours and yours alone. 😎
It is now your story, your life and although your grief may now be measured by the pain you feel I am sure that you will be able to cope with it much better with the beginning of each new chapter. As you have stated… "It was the worst of times and the best of times"… well we can see the worst of times, perhaps we will now be able to see some of the best of times… for you and for Stephen as he reflects in each of your small glories at "La Maison du Puits". 😀
[quote] [i][b] "It is a far, far better thing that I do, than I have ever done; it is a far, far better rest that I go to than I have ever known." [/i][/b][/quote]
So ends Dickens' "A Tale of 2 Cities"… but perhaps we can apply the first part to your endeavours: "It is a far, far better thing that I do, than I have ever done" and the second part to Stephen, free of pain and, if you choose to believe, as I do and I will, at complete rest: "it is a far, far better rest that I go to than I have ever known." 😎
I hope so. 🙂
Much love and deepest respect
Dai.
C: Difficule is a pig of an infection Tom… I know because I have had it as an almost permanent companion since last May (2012). It blighted my relationship with Revlimid and finally the medics decided to move me off Rev and onto Bendamustine… against my will, especially after a Haematologist at another hospital (where I was taken after an emergency high infection) said that the C: Diff would most definitely interfere with the absorption of the Revlimid. 🙁
I told this to my consultant to no avail… the 'team' had decided to move me on to Bendamustine and that was that… for 4 months, until it failed and my consultant and I decided to take the novel route of Velcade for the second time. In all this time I have been on, or weaning off, the drug called 'Vancomycin'. 😎
They did not discover that I had C: Diff until the end of July 2012, although I started suffering (and that's the right word) with C: Diff in May. My ex-wife, a senior home carer, told me that the symptoms all pointed to C: Diff, in June… but the medics at the hospital ignored her/my suggestions. My ex-wife also told me that 'Vancomycin' was the only effective long term medicine against C: Diff.:-/
I wish you as much relief as possible while in hospital and a good long-term course of 'Vancomycin' while you recover.:-)
You have had a bad turn of luck by picking up the C: Diff and I truly hope you can have it treated and defeated quickly and permanently.8-)
Regards
Dai.
I agree with everything David said in his post!
[quote]http://www.youtube.com/watch?feature=player_embedded&v=4-2xw9efsuA[/quote]
Please watch this if you have not already done so and may I echo David's recall of: [quote]'Listen to your body, if it says rest then bloody well rest'.[/quote]
MM=Fatigue=MM.:-P
Dai.
Hi Eve & Slim,
I have been there but they didn't give me a 'T' Shirt or an operation… which sounds good.:-)
I had a full blown DVT in my right leg in June 2011, followed by a course of Clexane: 150mg, for 6 months, reduced to a maintenance level of 40mg, which lasted until July, 2012 when I had a perfectly matching DVT in my left leg. They upped the Clexane back up to 150mg which I am still on to this day. A ward Doctor told me that only 60% of the dosage is effective… so 90mg of the 150mg and only 24mg of the 40mg dose are effective… in his words the 40mg will never help repel or stop a DVT. (Forgive my maths if I am wrong but hopefully you get the idea)
Both times it took approx. 3 months to get each leg back to normal. I found that driving long distances caused my ankles to balloon but relatively short distances (40 miles or so and I'm Ok).
As I said a few weeks ago, the Hospital, or rather one of my Lead Nurses, supplied us with a long term basic wheelchair which pleased Janet and I have come to accept it as an aid rather than a proof of my body failing to do its duty. As far as I am concerned it is a form of freedom… for both Janet and myself, allowing us to go to places beyond my walking range… although we know that even those journeys will have to be planned to avoid too many gradients etc., because while Janet is delighted to have the chair, going uphill is no fun.:-P
I hope that Slim's mental capacity improves while off the Chemo, of which he has had his fair share and I am utterly convinced that the side-effects of the medications make up for circa about 80% of the problems with our quality of life.:-(
I wish Slim well and while I never made it into the Armed Forces (I tried when I was 17 but failed the medical with blood issues…) I did manage 14 years as an underground miner and learned a lot of hard lessons from some very hard (but always fair) men. 😎
Don't take any crap from him while he is suffering… you know that if he was anything like his true self he would not be proud of how he sometimes reacts to your care efforts.;-)
Much love to you both.:-)
Dai.
Thank you one and all for your support… I am putting last week's experience down to 2 things… Start of treatment syndrome (actually the start of Cycle 3 but a new regime of once a week for 4 weeks followed by a 13 day rest/recovery process which to all extent and purpose meant starting again and all that that brings). Today was totally different… in for 10am… called through at 10:20am… treated and home by 12:00pm (including a 40 minute home journey. 😎
Everything went smoothly with friendly chat, a couple of new acquaintances… including Zak, an RAF helicopter pilot with MM at the age of 32… it's just not right. Married with 2 children aged 6 &3… a great career and a young family that he obviously loves to pieces… Zak is as positive as anyone I have ever met, with a love of life and a vibrant, positive outlook on life, MM notwithstanding. It certainly puts my small complaints in their place for sure. He may register and say hello, I hope he does… and if he does I hope we can help him by exchange of experiences etc. I told him about the Under 50's section and I hope he joins.
Week 2 of the new regime has started on a positive note. My nurse for the day noted that my PN survey had included an increase of PN in my hands and she went away to take advice about my 2.75 Velcade infusion. I was quite happy to go ahead and ask questions later but she had already raised the question with the Lead Nurse… who took advice from my Consultant. My Consultant felt that it was important to keep the efficacy of the 2.75 infusion given the new once a week regime and I agreed. So PN noted and Carry On Regardless. I had seen her briefly while I was in the Day Case waiting area and asked her about my Zometa regime… I had not been given any since the last Bendamustine infusion… my Lead Nurse informed me that it is booked in for next week. 🙂
So here we are, on 2.75 Velcade… with monthly Zometa infusion… 50% Dexamethasone and feeling good… physically and mentally with bedsores looking better. I had an excellent weekend and I am feeling as good as I have felt in a long. long time. 😎
Dai.
Well done Tom,
I am glad we have caught up with Sue and now at least we know how she is doing.:-)
I f you read this thread Garry please let Sue know that she is in our thoughts and that we are pulling hard for her to get her platelets sorted and that she manages to get back onto an even keel sooner rather than later.8-)
Regards to Sue and her family.:-)
Dai,
Hi Dick,
I am also on Velcade (started Cycle 3 yesterday) and after one Cycle my Kappa Light Chains dropped from 3,087 to 380… a fantastic result for me. I completed a 6 Cycle course of Velcade 2 years ago and on a similar note my 1st Cycle wiped out a secondary tumour and my Light Chains were down to 0 after 3 Cycles, which were sustained until the 6th Cycle where treatment stopped. 🙂
Unfortunately the Light Chains started rising after only 6 weeks and relapse was called after 12 weeks. It has been the story of my MM journey… I respond well to treatment but once treatment stops I quite quirky relapse. This time around we are simply playing for time not remission. 😎
I hope your journey is similar during treatment but the opposite during remission with long bouts of treatment free healthy living.:-D
All the best. 😎
Dai.
Hi Dawn,
I was/am a great advocate of Pomalidomide/Pomalyst and I am greatly surprised to see someone in the UK already reaping its benefits. I can only surmise that you are part of a very small trial as Pomalyst's other breakthrough drug Kyprolis, was licensed by the American Food & Drugs Agency (FDA) last July and is only now going through the trials set by its European equivalent.
Pomalyst was only licensed by the FDA in January this year… so I don't expect full trials of Pomalyst in the UK until much later this year. (As part of the European arm of testing (you would expect that the full force of American testing and the strict and very thorough approval of its FDA to be enough for us… but it isn't). 🙁
The last new Myeloma drug before Pomalyst and Kyprolis was Revlimid in 1996… so these new drugs are extremely important to our generation and those that follow. 😎
Count yourself treble blessed and please keep us informed of you progress. 🙂
I wish you every success. 🙂
Dai.
Well done you,
I wish you all the best for July 1st, please keep in touch if you can… good blogs, tracking the process through good and bad are invaluable resources for those who follow and I am am certain that you are more than capable of producing such a blog.8-)
Here's looking forward to as smooth a ride as possible.:-)
Dai.
Hi Maureen,
Congratulations,
Everything sounds great, especially your son's cake (if not the aftermath). I am so glad that Ian was well enough to join you (although I imagine it would have taken a full squad of beefy nurses to stop him getting out) but the fact that he stayed longer than arranged showed he enjoyed the party as much as anyone given his circumstances.8-)
It was your day though and I am so glad you enjoyed it… even allowing yourself the rare treat of getting 'quite emotional' in public, albeit your family and friends.:-)
Best wishes for a much better year ahead.:-D
Dai.
