Ah… life on this planet. 😀
I was getting worried… no messages or replies from anyone about anything for a good 24 hours… I know there was some maintenance done at the week=end… but I tried coming on board only to find it like the Marie Celeste… floating quietly along with no one on board.
Back to normal now… 😛 I hope.;-)
Dai.
Hi Helen,
The thing, for me at least, is that we do have choices and options in the direction and management of our Multiple Myeloma. But… these choices and options, the ones that will dictate our medical/clinical paths through MM, arise when we are at our most ignorant, our most vulnerable… and inevitably, our most frightened.
In those circumstances it is virtually impossible for most ordinary layman to take stock, consider all available options and then make informed choices.
This site is full of people… patients and carers, who can offer the benefits of case histories and personal experience… there are a plethora of blogs for the differing treatments, processes and procedures which have come and gone and have disappeared into the archive somewhere.
What we need is a comprehensive list of sections (including grief and counselling therapy etc.,) where these experiences, processes and procedures can be stored and accessed…
I need a longer, more dedicated thread to get my point across… but it would be a pity… a crying shame… if all our experiences, advices and blogs were lost for the sake of site organisation.
It would be much easier to advise and direct new patients if we could point them towards the 'Stickie' sections containing our collective experience and then just talk them through it…
Another time… I know what I mean.:-(
Dai.
Happy Anniversary Jo!
Good grief, 46 years is a long time… but you are still here and hopefully celebrating. 😀
Anniversaries, high-days, holidays and birthdays are good to look forward to… especially those milestones… whether they are naturally occurring (like a Golden Wedding etc.,) or set in the road ahead as a marker… in my case my 60th birthday due on Xmas Eve 2013… my personal milestone. 😎
Our wedding anniversary is on the 10th October – only our 13th… :-/ but we have been together for 19 years – we met on the 10th October, so next year will be our 20th… another milestone – and a very nice one to look forward too. 🙂
I hope your day is good and getting better all the time.
Much love
Dai.
Hi Gina,
That is good news. You can tell your Mum from me that I have often felt at my absolute worse after getting good results… it just means that the medicine is doing its work. Unfortunately she is feeling the double whammy of the chemo being active and the accumulated side-effects, especially fatigue, that accompany the drugs at work. Essentially the drugs are making her feel ill, not the disease. The effects of the drugs will wear off but the actual disease will have decreased.. and so it goes on, beating it down until it achieves either complete response or an acceptable plateau.
I had a secondary tumour when I relapsed in January/March and it grew like topsy on my sternum… but the first course of Velcade made it disappear in a few weeks… I was fortunate that the tumour was MM related and I hope the same goes for your Mum. I am unfamiliar with the workings of Revlimid but hopefully it will have the same effect and shrivel up your Mum's nodules in no time. 🙂
Best wishes to you both.
Dai.
Leaving us OTH.
Okey, dokey…
OTHERWORLDLINESSES
Giving you SES
Dai.
VEST – leaving…. errr… EST.8-)
Dai.
Hi All,
What a strange unconnected day I have had. In for the last infusion of Velcade Cycle 6 – wearing one insulated glove on my left hand as I drove in to keep it nice and warm… which encourages the veins to rise… Janet made me.
The day-case unit was very, very quiet… never seen it so… we even got a parking spot opposite the front door! But it was 1.15pm when we arrived… and 'between' clinics, with most of the staff on their lunch-breaks. So apart from 3 or 4 dozing 'clients', cooking slowly while being basted with multiple marinades, there was me and Janet and 2 of my favourite nurses.
We were straight in, barely a minute's wait, off with the glove, in with the cannula, first time, clean as a whistle, a quick chat and done by 1.45pm. My nurse rushed off with my HB test and came back within 10 minutes – 11.4HB and everything else 'Just So' or even better than Monday. Given that I have 3 infusions doing their rounds and my daily 'Clexane' injections… all designed to keep your counts low… I was/am ecstatic.
As we left people started appearing out of crooks, crannies and shadows… patients, nurses, admin… even the Prof smiled at me from the Nurses Station as I passed by… surreal.
So me and my girl raided MacDonald's West Bridgford (after a quick rummage around Lidls for the first time in an age) and set off for the Holme Peirrepont Water Sports Centre (River Trent side) to munch on 1/4pounders and fries (with milk shakes) and watch, feed, and tease the ducks various for a good hour or so – sublime. 🙂
Dare I say it? I feel good. (Brave Boy, Brave Boy). 😎
Dai.
My Dear Min,
Like Gill's wishes for Stephen I would like to think that I could have a 10 year tenancy with MM… I was 54 and 4 months when I was diagnosed with cancer, I'll be 58 on Xmas Eve… which would make me 64 when the renewal comes up… I'll settle for 62… I've set my sights on 60 in the first instance.
My Kappa Light Chains were 3,500 when I reached Nottingham. I arrived in our small village wrapped in 2 duvets and several pillows in our car driven by my brother Roy with Janet in the front seat offering succour and sweets throughout our journey. We made one stop… where I peed into a plastic orange juice carton because I knew I could not make it though the services to the toilet. One quick stop, a take-out coffee then away to a strange new world looking for a miracle.
We left my beloved Fishguard followed by an extra-large van driven by my youngest brother Stephen, with his son, my nephew Ricky riding shotgun – the van crambed with our belongings… they made a second trip a week later, from Swindon to Fishguard, to Aslockton, to Swindon… both times.
My journey, in the widest sense, was akin to the flight into Egypt. After my well documented horrors, under a certain Doctor from Swansea who refused to either investigate or treat, my GP found me an oncologist in Nottingham… a name and an appointment… and on the strength of the I wrapped up my affairs in 3 weeks and made the desperate dash for help.
And it was desperate Min… it was a matter of fight or flight… so I compromised in my own way and flew… taking my fight with me… because my fight was against the disease, not incompetent medics.
On the day of the move 12 of the Lifeboat Crew and several other friends from the Folk Club (all good customers and mates from the pub/restaurant that we had just been forced to give up) turned up to strip and load… my best friend Steve, the inshore boat skipper and bodhran drummer walked away wiping tears from his face because he couldn't say goodbye… he had lost both his parents and his sister to cancer over the previous 10 years and he 'knew' he would never see me again. We swung around the headland above our house, looking out over the Irish sea as we turned inland for Carmarthen and the M4 beyond… I never thought I would see the sea again… or Steve.
Six hours later I managed to walk the 5 yards from the car to our new, unseen bungalow with the aid of 2 sticks – determined not to be carried and sat down in my adjustable chair which was first in and wired for duty. Four days later I had my first appointment… ten days later, after a battery of tests and scans etc., I had been diagnosed with MM, had a joint meeting with my oncologist and 2 consultants from the Haematology team… at the end of the meeting the Haemo's took over and I was off… and onto CDT within 3 days.
It was a chaotic, tumbling turmoil of a time. I made my mantra… 'Whatever It Takes' and went for it. I started my CDT at the end of June… by the end of September I had reached 'Complete Response'… by the end of October I was declared in 'Complete Remission'… not a trace to be found.
I wanted to reach Xmas… and suddenly I had a chance of the 10 year deal.
I was told that my CDT results put me in the top 10% and made a 3 to 5 year remission quite promising… but the 6 intense sessions of RT overkill for the tumour on my vertebrae also destroyed most of my Stem Cells… the harvest was extremely difficult and even with 2 extra 'Plerixafor' shots I only managed 2.1 million cells… into 14 preservative filled bags… to my mind my STC never had a chance… at least I got 10 months. The sudden relapse and accompanying secondary tumour knocked us both for 6…. 12 even… but Velcade has done its job… the tumour disappeared, my numbers are at 0 across the board, my HB is at a 4 year high… I have hope again – hope of reaching 60? … perhaps, if Revlimid is as effective (I can't use the word 'kind' about treatments) then who knows? I might even make the 62 mark… shhh.
And during this 2nd awful period of my illness, a period that I have survived with a little hope, I have watched, read (literally and between the lines) and listened as Michael, Patrick, Gaye, Gordon and your wonderful Peter slipped away… all the options and snippets of hope denied.
I am not frightened of dying Min, truly… I am scared, I admit… but mostly I am worrying about the pain that my going will leave behind. For my wonderful Janet whom I adore completely and unconditionally… and my children and grandchildren… I agree with you wholeheartedly… death is a final curtain… but those left behind have to take the stage every day and every night, public and private as they try to fill gaps, make sense, reach out… and It is my job to try and soften that leaving as much as I can… but for those that literally died fighting it was difficult… because they were still reaching for a little more hope and time and breathing space… which never occurred, which never materialised in a recognisable form. Grief, and the counselling needed to help the bereaved as much as possible, should be a major part of the MM journey. Of course it should be available to all… but MM is known to be incurable… however polite and circumspect the medics may be they know that we have a finite time… and to my way of thinking MM bereavement counselling should be built into the medical action plan… because of the inevitability of the event.
You must do as you see and feel fit Min… but if you disappear I will be mortified… not because of your absence by choice of release but because I know that I will be feeling your grief… wherever you are, whatever you are doing… because you are my friend… and you are in pain… wrapping yourself in duvets and pillows that don't really comfort or console… because the voice on the other side is silent… because however soft you lay you will never feel the 'spoon'.
But we are still here, for as long as you need us… let your anger rip if you will… wail, cry, shout at the moon… but let us hear it… and then see if we can channel it… 'it' being our determination to get this site to recognise 'Grief' as a section… a section where we can learn from each other, teach, advise, prepare… as an organic, blossoming movement for recognition in the consultant's clinics, day-case units and hospital wards… even the GP's surgery… perhaps especially at the GP's surgery.
I need your grief, I need your friendship… so does Janet, even if at this embryonic stage is is not yet tangible… but the time will come.
But most of all I believe we need each other… to see each other in the truth, honesty and raw clarity of the upsides and downsides of this short life sentence which is Multiple Myeloma.
And what's more, I like you… very, very much… and I would miss your 'voice' and your courage and your sense of proportion – yes, I would miss 'you' most of all.
Really, you don't have to offer anything to stay… just be… and that will do for me.
Whatever you decide to do… please don't give up.
Dai. xxx
ILS = Solitude
UDE – up for grabs.:-)
My sympathies to both of you… it sounds painful… but why the cannula? I cannot imagine receiving Mephalan without the aid of a Hickman or similar multi-line… as a matter of fact I can remember being told that it was crucial to have one for both the doses… pre-Harvest and the pre-SCT.
When I was admitted the time before last, for an infection related incident, they quickly used up 4 cannula entries in the back of my hands for anti-biotic purposes. A doctor was called in during the night and fitted a cannula into the crook of my left arm, which worked easily and well but then took up the only decent access for general bloods, which they seemed to need at least 3 times a day. When I asked why this was not used more frequently (i.e. for Velcade etc., where they often struggle to find an access) I was told that it is harder to control if anything like a leak occurs. Apparently they can control, observe and/or treat 'leak damage' if it occurs in the bottom arm but it can prove extremely difficult if it disappears into the upper regions of the arm… which might explain why they used the back of your hand… but not the use of a cannula… which again, I recall being told, is never used for major chemotherapy… and in my book 'Mephalan' is major. Did they offer a reason for not fitting a Hickman?
Dai.
Hi Gill & Stephen,
Well part1 has been done and while full removal would have been ideal at least they will know the cause and will be able decide on how best to remove the rest (Chemo for MM – RT for associated). It makes me wonder if they might have gone for the lot if Stephen had been under a general… but then that would more than likely meant a much longer stay in recovery.
I imagine the results will determine the next corse of treatment, be it long or short term – personally I hope its a RT course for the tumour leaving the next MM based treatment to the MM necessity. I was extremely fortunate that my secondary tumour co-incided with my relapse and disappeared under the dual attacks from Velcade and Dex… it was a beauty before treatment began… and in a supposedly 'awkward' place, sitting loud and proud on the apex of my sternum but, as stated, the treatment withered it to nothing in the first 3 weeks.
I do understand your concern Gill… especially for something that has been causing you so much worry for the past few months, you thought it would have had the decency to be out and done with, regardless of its cause and origins.
'What's the use of worrying
It never was worthwhile… So
Pack up your troubles in your Old Kit Bag
And smile, smile, smile'.
Be it ever so wan and trembly… believe it just one more blip and then, if I may 'Tom' a line… Onwards and upwards and best foot forward.:-)
Dai.
Hi Graham,
Welcome to the forum, by the looks and sounds of it you have as much if not more experience than most on here. Your Stem Cell mobilization is interesting… how many did you have left from your original harvest?
Dai.
My 'need' is less conventional, being folically challenged by nature rather than medicine… and I have several hats of different textures for different seasons… but, if I could make a donation, I would love to own a woollen 'beanie' by way of a 'Bridget Original'… which I would wear by way of pride and comfort.
Wouldn't it be great to get you a bunch of sew-on tags with 'MM by BR' or something like for all your hats?
Don't let me pressure you… pretty, pretty please!:-) 😎 😀
Dai.
Hi Liz,
The side-effects will pass, they always do… but… I just realised how insensitive I have been in my post above…
[i][b]'everything else went fine, with a nice 4 way chat between myself, an elderly afro-carribean leukemia patient and 2 new Myeloma patients… well, new to me that is… with both of them being around with MM for 4 years or more… much banter and sharing of news medical and family… making for a really nice hour or s[/i]o.'[/b]
Forgetting of course the 2 nurses who joined in with the conversation and banter… the daughter of the female MM'er and my wife Janet who pulled everyone in and made sure no-one was left out.. what a plonker (me that is).
Dai.
Hi Sarah,
I am reminded of a simple ditty spoken by Bilbo Baggins to Frodo in the first of the Lord Of The Rings Books when Frodo is about to start his epic adventure and Bilbo is quietly reflecting back on his life.
[b]Bilbo's Song in Rivendel[/b]
I sit beside the fire and think
of all that I have seen,
of meadow-flowers and butterflies
in summers that have been;
Of yellow leaves and gossamer
in autumns that there were,
with morning mist and silver sun
and wind upon my hair.
I sit beside the fire and think
of how the world will be
when winter comes without a spring
that I shall never see.
For still there are so many things
that I have never seen:
in every wood and every spring
there is a different green.
I sit beside the fire and think
of people long ago,
and people who will see a world
that I shall never know.
But all the while I sit and think
of times there were before,
I listen for returning feet
and voices at the door.
It is, as I say, a simple ditty… but it is also a powerful evocation of all those that have gone before… all those people, places and things we will never see and, for some of us, experiences we will no longer share.
You will see and share a world with your children and Grandchildren that Gordon will never know… that he has never even been aware of… I know that Janet will have similar experiences when I am gone… and I want her to enjoy every single second. That will be her time, as this is yours… I wish I could stay and share every second but I can't deny those destined to carry on the joys of new experiences taken on a different path. I know my love will travel with Janet and with those that loved me… until, in a generation or two, we all in turn will pass into memories and legends on the perimeters of where love begins.
For now I am content to wait my turn and dwell happily on my favourite part of this powerful ditty:
I sit beside the fire and think
of people long ago,
and of people who will see a world
that I shall never know.
It is ours, it will be yours, it will be theirs.
Amen.
Dai.
