[DaiCroParticipant]

Hi Roz,

I never received a visit from a cleric of any denomination but I can understand why Michael might open up to a stranger… and not tell you about it.

He most likely thinks of her as someone who is discreet and used to being a confidante; someone to whom he can pour out his misgivings, his fears and his sense of hopelessness – without having to worry that he might upset her, or make her feel negative and/or helpless. He wants someone – non-family, non-medic – to listen to his darkest fears without making them feel responsible or guilty.

There have been plenty of times when I would have welcomed someone to offload to like that. I don't know about Michael but sometimes I just want to offload; to hear myself say those things that you normally have to hold back or hold in… without the need for reply, or answers, or even reassurances – just a sounding board… nothing more, nothing less.

I know it might not seem much poppet but you have us; you always have one of us – on duty at most times of the days – and you know that sometimes it is enough just to let it out. It seems to me that Michael has found someone in lieu of 'mates' on a discussion board (I know we are much more than that) – someone to whom he can offload and know that it is 'OK'.

Be glad for him and please don't take it as a personal slight – I am sure that he feels he is protecting you from the 'dark' side of his illness – nothing more, nothing less. 😐

Dai.

[DaiCroParticipant]

Good morning David,

I remember this stage well – waiting to bottom out (most like Tuesday or Wednesday) followed by the 'interesting' plateau for a few days before the magical 0.01. Once they consider you have reached the plateau you will be woken up each morning for blood samples (a bit optimistic for the first four or five days but you never know, some of us respond quickly).

The good thing is, each day that you wake up brings you one day closer to going home… and while that sounds obvious it is also inevitable – everything else just has to be endured (its a bit like getting the Flu, once it settles in its just a matter of battening down the hatches, taking/doing whatever it takes to ease the passage and then waiting for things to turn around).

You sound as if you are well set up, with everything and everyone in place to get you kickstarted and out on the road to recovery. I have no doubts whatsoever that you have the wherewithal and positivity be able to get through the plateau, safely and stoically… for everything else there is always the 'MY' gang.

Lie back and think of England (not my choice but each to their own :-D)

Dai.

[DaiCroParticipant]

Hi Roz,

Like Tom I don't believe its over until its over. The fact that his myeloma is improving surely says that the premium has to be put on controlling his infections. You are both having a truly rough time but I am sure that the medics will find a way.

Best wishes to you both.

Dai.

[DaiCroParticipant]

My good wishes for a trouble and incident free transplant. Go with the flow and you will be home before you know it. Believe me it is well worth it. 😎

Dai.

[DaiCroParticipant]

Hi Jo,

Click once on the smiley face at the end of the row above (shown when you go to reply). Then click once on the face you want to apply and it will appear as code (lines, dots, letters etc) that represent your face. When you press post the code will transform into a face. 😀

Hope this helps.8-)

Dai.

[DaiCroParticipant]

Hi Debs,

CDT must be imminent, so a quick note to wish you good luck and send you some positive vibes.

My body was near enough broken, with rampant and ravaging bone deterioration and very limited mobility as constant companions when I popped the first pill (cyclo) in May '09. 3 cycles later there was no discernible trace of Myeloma; after the 4th cycle I was told I was in 'virtual' remission.

17 Months down the line from that first pill (harvest and SCT in March included) my problems are all related to the damage done before the pill, not to the disease itself.

I felt a tad nauseous for a day or so a couple of days after each C but anti-nausea pills held that at bay and the only problem I had with D was in dealing with the sheer number of the little blighters. I though of the T as the magic potion, the miracle pill and took them with hope and relish.

CDT was a miracle for me and I hope it has the same effect for you.

My MM (or My My as I call it) might come back next week, it might stay at bay for a number of years and coming to terms with that fact is my biggest challenge, everything else is just life and I deal with it… and I am grateful, beyond measure, for that life, challenges included.

Dai.

[DaiCroParticipant]

[quote]He had op yesterday, the staff just tell me he is doing fine. [/quote]

Hallelujah! At least (and at last) things are finally moving Roz. A decision was made, Michael's gone along with it and even as I write and you read his arm is responding and recovering to and from the surgery.

In my big picture for you and Michael it is Christmas and Michael is home and you both have a plan to work to – chemo, recovery, remission. Baby steps but steps nonetheless.

Much love and positive thoughts

Dai.

[DaiCroParticipant]

[quote]'I'm prepared for the worst but hoping for the best'[/quote]

You've already got everything you need – but my best wishes won't be a burden, so here they are.8-)

Dai.

[DaiCroParticipant]

You don't have to be anything but yourself at the moment Nicki and if down and irate is where you are right now then that's allowed; you know that things will change.

From the moment they start the drip for the mephalan everything goes out of our control; both patients or carers alike. After that its a matter of waiting for the mephalan to do its work and then get cleared from our system, followed by the return of the stem cells and the wait for them to bind, grow and kickstart the new, cleaner, brighter system.

We then have to find our own coping mechanisms as we wait for that first positive reading some ten days or so down the line. Its not a matter of better or worse, just different but all ways and any, its allowed, its OK, no right or wrong, just different.

I wouldn't be surprised if by this time next week you will both be home and facing up to the new challenge of recovery and the eventual rewards that that process will bring.

Hang on in there poppet.

Dai. xxx

[DaiCroParticipant]

Thank you Michelle.

[DaiCroParticipant]

Thanks Bridget,

Yes, as i thought, about the end of August. I don't know if Mary or Theresa ever left an email address, I'll go look. If not I just hope that they pop in now and again; I'd like to stay in touch.

Dai.

[DaiCroParticipant]

Ooh, I'm in. Holding mid-fielder. Can I reserve a shirt No.? 16 if its still available.

Thanks David.

Dai.

[DaiCroParticipant]

Hi Roz,

Good grief girl, you and Michael are certainly getting a rough ride; a real roller coaster of mights, maybes, ifs, whens and dependings. I appreciate what you say about the bad access, it sounds like a real, actual pain for you.

I am still crossing everything in sight that all this finally leads to your getting Michael home for a period of rest, recovery and an acceptable period of remission – you deserve it, you really do, both of you.

Hugs a plenty
Dai. xxx

[DaiCroParticipant]

Hi Gaye,

I'm glad that you are telling us about your adventure from this side of the hospital bed. I had the rigors before, during and after my Hickman Line replacement procedure and I know that they make for an extremely unpleasant experience. Sleep, a hot shower and clean smelling hair are real treats when you have to do without them but please try and make it another seven years or so before your next trip in. 😀

Dai.

[DaiCroParticipant]

Hi Mari,

It sounds like there are quite a few muso's within our clan, perhaps the idea of a concert should be taken seriously – I will start a train of thought about it when the present one has left my station (I'm a one platform kind of guy these days).

I didn't make it out, I got very tired during the day and my inner voice said 'no, not this time'… but I am thinking about another session a bit further away tonight – we will see.

Dai.

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