Gina and Angelina,
Thank you you both for allowing me a poor-me moment, I think I was due one.:-P
I am aware that I am far removed from some of the problems that others are going through at this time and I do feel for them, truly. Without trying to sound macho I sometimes think that I prefer pain to other, general sickness disorders. Believe me I have had my fair share of pain but at least I can throw things at it or at least lie as still as a muse and breathe softly… I hate the nausea and general stupor of these side-effects because they flatten me, especially my spirit which I can't abide.
Just whining makes me feel better… because it makes me feel slightly ashamed… which makes me feel angry… which makes me swallow water like there's no tomorrow and then I pee for Wales ( youth team reserves but still valid).
Genuinely feeling a bit perkier.:-) 😎 😉 😛 :-S 🙂
Dai.
However good your lead nurse this is a consultancy mater and your consultant should have made sure that you were seen for a full explanation IMHO. As Eve says, its early days but I'd be pushing for a full consultancy meeting sooner rather than later, you deserve that for sure.
Dai.
What are you like. You are supposed to be taking it easy, not head dives down the stairwell. It was a good job Steve was there and I am glad you are home and recovering… just take it slow, sit in the garden and get an escort up the stairs… here I was taking your silence for an enjoyable, carefreee time. Tut, tut… and I mean tut. 🙂 :-/ 😎
Dai.
Fingers, toes and a thousand best wishes Min. Peter knows what's coming and, as you say, he has his aplomb and his courage and something to aim fro… something positive, something really, really good.
God bless and a following wind.:-)
Dai.
Thank you kindly Jo,
I don't want to hog the Off Topic section but you never know who you are going to 'speak' to, so unless someone sends me a private message asking me to desist I will post the occasional lyric or finished song. I would not take offence… 😉
Dai.
When we did our emergency flight from Wales we ended up in a friend of our in-laws' bungalow that they had just put up for rent due to a lack of sale. Two years later (yesterday in fact) we are still here, with carte blanch from the owners (who live in France) to do whatever we want to the house. Apart from a little decorating we have left it more or less like we found it, which was pretty good, excepting the garden, which we (the Royal 'We' aka Janet) have enjoyed planting and shaping to our own tastes.
Saying that there was already a mature plum tree, hazel bush and several bushes various to wok around. Now we have our seasonal wildflowers, primrose, daffodils, crocus, poppies, sweet-peas, roses (several bushes various, some existing, some planted by Janet, that give us a splash of colour most of the year around, oh, and about a dozen or so pots of various size that we brought up from our pub beer garden in Wales, which Janet is planting out as I speak. We also created a space for our 5 year old grandson; last year it was pumpkins and squashes which were a great success, so the same again and a few additions which they (Janet and Alfie), plant out and tend to every Wednesday after school. I just admire and eat, so I am happy too.:-D 🙂 😎
Day one of Cycle two of Velcade on Monday past so I am just floating on by a little out of it but not nearly as bad as Cycle one as yet (that was when it was fighting the secondary tumour and a good job it has done with that because it has gone from the surface and the underlying tightness seems to have eased as well. I have got a CT scan on Thursday,with Day 2 Cycle 2 to follow). The CT is for the secondary, so fingers crossed there is little to find and they leave it to the Velcade to finish it off – I hope so… the talk about it being in a 'dodgy' place didn't inspire, especially as they said they would only have one shot at it with radiotherapy (if needed). I am quietly confident… but you never know with this bl***dy disease. No… Velcade has it, I am sure of it and I haven't been far wrong yet (he says grabbing his solid pine dresser/come desk). 🙂
Myeloma's not getting the last word here, so I've looked in out of the window for something new and I can report a clump of foxgloves just starting to tower and flower by the back fence in a nice sunny garden.:-)
Dai.
The best of luck to you both Min, if anyone can do it you can.
I am forever amazed by the recovery from a doubtful position, my own included. I have just started my second cycle of Velcade and I hope for the best, especially as I look and 'V' side-effects and Dexness aside, I feel so well. Ok, I have my physical restrictions but they are both expected and accepted but generally I am ticketyboo.. and that will do for me. I hope Peter joins the club sooner than later.:-)
Hi Carol,
In remission and riding horses is hardly likely to draw much sympathy:-) But I understand where you are coming from, there is always the fear that it might be 'more' than 'just' arthritis and wear and tear and that is totally understandable and for that you have both my sympathy and empathy.
Refuse complacency from your medics. Ask your consultant about biophosponates.. if you are already on them and heshe rules out infusions (Zometa) as an alternative then go with David and get your GP to give you pain killers to mask the pain.
I suspect that ruling out anything nasty will help as much as anything – the rest is just white noise.:-)
Dai.
Hi Tina,
I recently wrote this as part of a response to another thread in the 'Off Topic' section. It regards Janet and her watching over me.
'I catch her, in quiet moments, with her eyes upon me, quietly drinking me in, assaying her thoughts… and I leave her be.
I am her here and now, she is my beautiful. In the days to come, through their desire to please me, touch me, give or take from me, my children and family will delve with loving eyes, minds and hearts and hope to get close to an understanding of what they are seeking.
Not Janet. She knows the secret.
When I am gone, when memory takes over, from the rawest memories of the first days to the mellowest of the last, she will simply say to herself, with utter conviction:
I was loved'.
And so were you Tina, and so were you. xxx
Dai.
Thank you Jo. 🙂
Primarily I am a folk singer/songwriter with 30 years experience of folk clubs and performing solo and in a range of folk/folk rock bands… plus 15 years playing in a Ceilidh Band and 7 years singing with a Shanty Band.
But when it comes to songwriting I write across the board… from jazz to hip-hop, pop to country rock and all genres in between – I love the disciplines and the challenge. 😎
It is still my intention to bring out 4 albums this year:
'Country Bound' – mixed genre country (Janet's favourite).
'Etcetera' – pop, jazz, indie etc (my favourite)
'King For A Day' – all shades of folk (my family and friends favourite)
Plus of course the challenge of the 'Angelina' song cycle.
Apart from the Angelina project all the songs are written and recorded – its just a matter of collecting, collating and mixing… for my enjoyment and for my children's posterity. 😎
Busy, busy… time and energy sponsored by Velcade… hopefully. 🙂 😎 😉
Dai.
Miss, miss, me miss!
Vivid dreams of the highest order in Technicolour TM with all the bells and whistles.
The whole body super-twitch (usually when I am about to drop off) is a classic, I would love for someone to set me up in laboratory conditions with forty strategically placed cameras etc. to capture the moment in slow motion. I swear that my whole body clears the mattress by a good inch or so… and if you had someone with really quick hands they could pass an aluminium hoop along my body before it landed. The mini leg jerks are frequent too but I don't mind them… they amuse me.;-)
I've been on Gabapentin and slow release MST for over three years now – am & pm – and if I miss a dose (which has happened about four times in total) I get real bad withdrawal symptoms, including stomach cramps, shaking, dehydration and a whole body dull aching – not pleasant. :-S
Occasionally I take one 3.75mg Zimovane sleeping tablet – I can't take them too often because they lose their efficacy after a while… and you have to wean yourself off them and start again… so says the teeshirt wearer. But, used cautiously, once or twice a week, and this baby sleeps like one… and more importantly dreams like one… bliss.8-)
Dai.
Hi Min,
I wish Peter the very, very best with his treatment. It certainly does not sound very pleasant, having been through most of that at one stage or another but it is a plan… and hopefully a plan that will get him his shot at the SCT. I appreciate that the medics are warning Peter that he will feel very ill with this radical treatment but radical (or drastic) can often lead to good results, however weak it temporarily leaves him. Personally I would be reverting to my old mantra…'Whatever it takes' and snarl at the Mephalan as it went in (at least that's what I did last time).
It's an unenviable position to be in min I know that… but it is a plan and it [i][b]co[/i]uld[/b] lead to a very positive outcome.
Here's hoping and wishing with everything crossed. 🙂
Dai. xxx
Thank you all.
Discipline! Good grief Bridget, what's that when its at home? 😀
I'm weaned off Dex for the moment (Cycle 2 starts on Monday) but even without its manic meanderings my mind is going ten to the bakers barmcakes at the moment and I jump from novel to songwriting and back again, several times a day. Funny thing is there is a semblance of balance forming… which means I trust my judgement, or rather my instincts, on when to change.
I am looking to write this book from the perspective of a ten year old boy but most definitely in an adult world. I want to capture a time and a place, the rapidly diminishing world of the small hill farmer and a lifestyle that was archaic at best by the turn of the 1960's. I want the language, the thought processes and the dialogue to be as authentic as possible while painting a series of portraits of the main characters. It is going to be a tough call but I enjoy the editing process and I absolutely know that I can reproduce the life and time because it is, with a few embellishments, my story and my people.
This is my one attempt at the Booker prize. A massive challenge but one that I will relish. 🙂
Dai (Thinking big while remembering small). 😎
Thank you Ellen.
From what I understand the reservations have been based on overall efficacy, that seems to have been answered, so I do hope that a method with equal efficacy and superior management of side-effects will soon be the order of the day. (I am about to start Cycle 2 and my consultant did say that I might get subQ administration within my planned cycles). 🙂
I won't hold my breath but I am breathing slightly easier.
Dai.
Ah Min,
I have nothing to offer except love and support. If the doctor is questioning the results then there is always the hope that what Peter needs is something to stop the rise, be that Bendamustine or whatever.
My consultant has said that when the stepped programme of licensed drugs has run its course they will try previous courses that have been successful, such as CDT or equivalent.
You say that Peter feels reasonable so it shows that there is strength there yet – hopefully one of the novel agents will balance and then start the downward journey so they can try again with the big guns.
I do hope so. xxx
Dai.
