Hi John,
I'm off out tonight to play at a local session – the first time in twenty odd months; feeling strangely nervous. :-S
Dai.
Hi John,
As a fellow muso I have been wondering about the logistics of putting on a concert – by mm'ers, carers, family and friends etc. as a promo/fundraiser. Any thoughts?
Dai.
Hi Nicki,
The Sam you know is still there, all this snapping and snarling is just a by-product of feeling so down and helpless, combined with his not really wanting you to see him like this.
Janet caught a cold just after my stem cells were returned and so I didn't get to see her (or anyone else for that matter) for twelve days. I missed her dreadfully; her company, her practicalities and most of all that feeling, that frisson of thingamajig that I feel every time she comes into sight (we can be together all day and she can go to the toilet and I still get it when she comes back into the room). She came in to the ward reception and left bags of essentials and goodies on four occasions but I didn't get to see her (but she felt closer on the phone, which is stupid but real nonetheless).
Thing is, in hindsight, I am glad that she didn't have to see me at my worst. I coped with it, I had no choice, but I am glad that she didn't have to look at the phizzog I was looking at during the two or three worst days.
Janet was like you Nicki and all you carers out there – you have to see us when we are bad, ill, sick, sticky – you have to deal with our mood swings and our doubts and drizzles but you also share in our little triumphs, see us recover, grow stronger and hopefully reach a plateau of normality; where we are the person we used to be, or near as dammit.
For me, those few days mid-SCT were the worst I felt in terms of physical well being and I am glad that Janet didn't have to 'share' them. For those that do, you in particular Nicki, please try and understand that we are not ourselves at that time, we are merely the shadow of ourselves, waiting for some light to lead us out into the other world – a world less 'real' and more 'normal' where we can feel human and look forward and outward, not inward and backwards.
Sam will soon be Sam again, it is enough at the moment that you can say 'I'm here, I always have been and I always will be'… and I promise you that, for now, will be enough.
Dai.
Hi Roberta, glad you made it – I hope we don't lose any friends in the move across to beta.
Dai.
Well I've done my bit. Didn't really want to as I find the whole exercise of relying on benefits both demeaning and humiliating but needs must (claiming and campaigning). I hope this survey helps show just how much out of tune the benefits system is in relation to mm patients.:-0
Dai.
Hi Nicki,
The idea of 'worse' is relative. Sam's system has just been given a massive jolt through chemo… or perhaps jolt isn't quite apposite, perhaps scour is better. His system has been scoured by the mephalan and he has had some really good stuff washed out with the bad, good stuff like his immune system and suchlike. He will have to survive on the bare minimum of good stuff until the stem cells bind to his frame and start relining the system.
Thinking about it the jolt theory isn't so far off the mark, his batteries have been drained and his stem cells have to get positive and recharge his batteries… until then he will feel drained, perhaps a touch of sore mouth, usually a few days of welsh full back (dai rear) and a general lack of appetite for food… and everything else for that matter [b]but[/b] not (unless he is unfortunate enough to get an infection) illness as you might imagine it (or at least not for me and most others that I've swopped stories with).
I wasn't ill as such, more like a bad dose of flu without the usual symptoms – so, total lack of energy, ennui, the runs and waiting, waiting, waiting… for that marvellous moment when he gets his first reading back (mine was 0.1) – a reading that says its working and a few days from home and the road to recovery.
Don't worry, just be there for him and don't expect much by the way of exuberance and sparkling wit for 10 days or so. 🙂
Dai. (8 months post SCT).
Ian's got the same camera as Gill – not enough exposure. Welcome Ian, we are getting there… here.
Dai.
Hi Gill – thank goodness for that.
Dai.
ps. you need to alter the exposure on your camera 8^).
Thank you team – for your patience and perseverance in getting us on board by hook and crook. If you could just pluck Gill out of the ether we will be almost complete.;-)
Thank you a thousandfold for such a wonderful site.:-) 😎
Dai Crowther.
Hi Roz,
Not having been in this position I find it hard to offer advice – however I can offer an opinion based on what you have told us about Michael's previous option, conditions and reactions.
It seems to me that:
a). The operation will enable Michael's arm to be secured against further infection – and that:
b). If the arm is made good and infection free then he can resume essential chemo treatment. Which:
c). Will give him a chance to get some invaluable remission or partial remission (with or without maintenance regimes) that will give him some quality of life and freedom from the stresses of ongoing treatments. Which will:
d). Give Michael back his dignity and ability to be himself with all the attendant benefits for you.
For me its a no brainer because it is a real, bona fide chance for c) and d) which you both deserve. What you need to know from the surgeon is just how good those chances are. From all I know about this damned disease it would seem that those chances are very good indeed; that Michael has had some damned bad luck topped up with deep rooted infections that can be tackled if and when his arm is mended. Michael has not had the opportunity for the second/third/fourth phase medicine that will give him a shot at c) and d) – so he must be shown/told that those opportunities are real and start with a) and b).
I understand that the disappointment of his relapse followed so closely by a series of painful and distressing fractures, infections and illness has sapped his positivity and his vision for hope. Make sure the surgeon knows this and that he does his best to convince Michael by giving him something to look forward to – if he comes on board and allows the procedures to kickstart his future.
I truly hope this happens.
Dai.
Further to my previous post: at the moment I am noticing several small irritants; irritants that would never have registered at all when the 'big stuff' was on the agenda. So on that basis, keep them coming and keep the 'Big Stuff TM' at bay. 🙂
Dai.
Hi Sarah,
And you too David – you and Gordon and all the Holly Branch SCT candidates. I don't envy you but neither do I dread for you; just keep positive and look forward to getting home and reasonably well enough to enjoy Xmas. Your appetites might not be the greatest but thats not really too much of a problem at Xmas time. 😉
4 weeks post-SCT? Yes, I think you'll be able to manage a cracker or too by then. 😛
All the best.
Dai.
Hi Roz,
The bain of my life is my PN – I'm a martyr to the tingles.:-/
Mine is definitely worse when I'm tired or when I feel off in some way – a bit like my Tinnitus. If I didn't have PN I reckon I would mark myself 80% mobile, with it about 65%… but given the alternatives I'll take it.
I'm sorry that Michael has PN on top of everything else he is having to endure and I am fortunate that my hands have hardly suffered at all (or at least hardly worth mentioning). Please pass on my best wishes when you get to see him next; I've still got everything crossed that the operation on his arm will be the kickstart back to reasonable health.
Much love
Dai.
Hi David,
My ankles have a permanent dry and scaly feel, with a bluish tint to them and several small to medium almost burn like marks above; all left over from radiotherapy elsewhere on my body (so I'm told). They improved no end in the summer (17th, 18th and 19th June and 23rd and 24th of July) when the sun got on them but alas grotify when left in the dark. If they don't bother you, then don't bother them is my advice.;-)
Dai.
God knows that we can be eternally grateful to and for the NHS for its 'not for profits' services and levels of care and I am sure that each of us can testify time and time again first hand about the wonderful personal experiences we have enjoyed – but if we don't conversely flag the bad practices and bad personal experiences, then things will only go from bad to worse, from wonderful to woeful, from bouquets to bucket banging and bricks.
You have had not one or two but many, even myriad bad experiences with your hospital Roz and its about time someone was told. Start small by getting in touch with PALS and having them look at this particular problem, which may seem small in the whole shebang but is potentially life altering in Michaels case.
Much love
Dai.:-(
