[DaiCroParticipant]

' It will be interesting to see if it comes back in a few days , feel a bit silly if it doesnt though!! '

I sincerely hope that you feel as daft as a brush you ninny. I will celebrate your silliness with you. xxx

Dai.

[DaiCroParticipant]

Jean, Bridget and Jo, thank you very much for listening. I'm glad you enjoyed the site Jean, its a bit all over the place in terms of different genre of songs mixed together but I tend to leave them in chronological order.

I have about 130 or so songs uploaded Jo – if you press 'music' under the navigation on the left hand side it will take you to them – it currently says 132 songs over 6 pages but there are some remixes amongst them.

I enjoyed singing this one Jo, my passion for the subject obviously came across… but I wish I had never been given cause to write it.:-(

Thanks again all – including those that listened without comment..:-)

Dai

[DaiCroParticipant]

Mary and Theresa,

I am so glad that your Dad found both peace and the grace to go surrounded by love in a loving environment. I am sorry that you did not get a longer time together, mm seems to have no rhyme or reason.

My thoughts are with you and your family.

Dai.xxx

[DaiCroParticipant]

Belated Happy Birthday Bridget. xxxxx

It was Janet's Birthday yesterday too and after three hours at the hospital we drove to the National Water Sports Centre at Holme Pierrponte, Nottingham with a couple of MacDonald meals (her choice) and sat in the car park overlooking the river. Instead of boats and canoes she was treated to the sight of several hairy men changing in and out of wet suits while we ate. I know how to give a girl a good time.

I hope your day went well. 🙂

Dai.

[DaiCroParticipant]

Well here is to years of bum pinching 😎

My mantra of 'Whatever It Takes' is a bit dated for stage 2 so I've come up with a new one… 'I'm Not Dead Yet' – a reminder to myself and a message to all those who are smiling wanly and waving me goodbye. I imagine stage 3 will be 'I'm Still Here' and with pompom and other drugs on or in the pipeline I'm hoping for a few further stages and a few more mantras.

Love to you both – I'd love to meet up sometime… and with Bridget, David,Gale, Min, Tom, Jo and the rest of the crew..

Dai.

xxx

[DaiCroParticipant]

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xxx.:-D

[DaiCroParticipant]

DItto, with lots of love.

Dai.

[DaiCroParticipant]

Hi Gill,

I am truly lost for words.

I am devastated for you and Stephen and in the reverse of reflected glory I feel the weight of your news on my own back. Stephens tenacity and your positivity have both been massive influences on my mm journey and I can only hold out the hope that either the revlimid, or a second SCT will give you both much longer time together than the consultant's prognosis.

Later, with love.

Dai.

[DaiCroParticipant]

Thank you, email on the way. I am very interested in this development, especially as I already have PN courtesy of my CDT course of treatment.

Much obliged 🙂

dai.

[DaiCroParticipant]

Hi Mary and Theresa,

I am so sorry to hear that Patrick is having such difficulty in responding to treatment. Did they dismiss Revlimid as a possibility? I'm glad that he has had the enjoyment of Cheltenham and Aintree and I hope that they can find something to keep him stable for as long as they can.

My SCT also failed after 10 months – so its Velcade next for me… and I am hoping that it works..

All my best to you both and all your family at this time… and please say hello to Patrick, he and you have often been foremost in my thoughts.

Much love

Dai.

[DaiCroParticipant]

Blooming Hector you lot…. one thing at a time please!!!

I read the OP and then started scanning the replies… I was horrified at finding out that people were finding it hard to get to the toilet on time and had resorted to using pads. It took be back to my SCT holiday and I thought 'Not again!'

Then I re-read and realised what was going on… so mightily relieved (not in the toilet sense).

I was at the INFODAY in Nottingham last Saturday and someone mentioned at lunch that there were cases in the USA where Velcade was given subcutaneously (injected under in the skin in the stomach) because tests showed that done this way there were far fewer side effects and very low to no PN. I asked the question in the afternoon session and the Prof said that this was not standard practice but they were following the progress – apparently they will need to know that the general overall efficacy is not affected or compromised by this method. Velcade is my next option and I already suffer from PN so I am particularly interested in this treatment/procedure.

Anyone else heard of this?

Dai.

[DaiCroParticipant]

Hi Jet,

It would seem that you (and I) have Bence-Jones, light chain myeloma. My pp's have never been a factor but my light chains were 3.500 when I started CTD. I was down to negligible after 2 cycles and 0 after 4. I had to wait for 4 months for my SCT due to shy stem cells but I stayed at 0 from November 09 t0 January 11 (SCT in March 10). My reading was 22 in January, although my consultant didn't tell me but they had crept up to 94 at the end of March. Due to 2 upward readings my consultant has declared remission over and relapse into disease at that meeting. Depending on my next reading on April 27th (Janet's Birthday bless her) my next treatment (Velcade I believe) will start soon after. I have a cold/chill/manflu at the moment but apart from that I still feel as good as anytime since the end of my CTD treatment.

Hopefully Saturday will provide a lot more answers and indicators of and about all things MM. 🙂

Dai.

[DaiCroParticipant]

I hope to see you on Saturday Jet, I have a chill at the moment but I'm hoping it will clear up before the week-end. Dr Byrne is my usual consultant but we have met them all during my treatments and while we have only met Sarah on a couple of occasions we know Jenny quite well (and I know that she feels nervous about speaking). 🙂

I'd like to say I'm looking forward to the day but in truth it is more of a necessity than a pleasure :-/.

Thanks for the tips from the rest of you, we hope to make the most of the day and I am sure that we will leave feeling both better informed and a little calmer than of late. 🙂

Dai.

[DaiCroParticipant]

Hi Susan,

I am almost exactly a year post SCT and my consultant has had to explain/reassure me that most of the pains I get are from the residual damage caused by the original myeloma and not indicators that mm is back. She has told me that because I am on eight week cycles of consultations it is far more likely that mm will be picked up by the tests rather than from pain generated from new disease.

It is a small comfort but I take it… mind you, some mornings when I wake up with an aching back or with a nagging ache somewhere else (several choices) that stays for most of the day, then I am wary and jittery. Usuall a good night's sleep, without lying in an awkward position, usually has me back in the world of 'living every day without fear'.

Yesterday was a bad day, today is good… and so it goes. 🙂

Dai.

[DaiCroParticipant]

Hi David,

I recall a few occasions where it has taken a few months for the readings to record a true value due to residual leftovers after the SCT's. I am coming up to 12 months SCT (mid-March) and I often have aches, pains and stiffness. My consultant has told me not to worry about such things as they are residual aches and pains due to the damage caused by the myeloma and not evidence of myeloma activity.

I often feel out of sorts, stiff, achey, blooming pn etc., but I am 57 with quite a bit of residual bone damage and limited mobility… so I sort of accept that as par for the course. The rest of the time I feel AOK (ish)… and that'll do for me.

I just want some sun, a few warm days, access to the outdoors and a literal spring in my footsteps.

Don't rush it… 10 weeks is still very early days. 🙂

Dai.

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