[DaiCroParticipant]

I had my 3rd infusion of Cycle 2 today and a sorry sight I made too. I think the staff normally see me in a positive light, not forced or jolly but certainly sanguine and up for whatever is on the menu. Last Thursday, pre-infusion, I had a CT scan on my sternum and it hurt. I had to lie back, with my legs over a sleeping policeman and arms stretched back behind my neck… it ouched a lot and left me with a week-end of total misery, with my lower back and kidney area banjaxed and my soda-stream a veritable trickle. I felt slightly nauseous all of the time… rather than nauseous, sorted and moved on… I hate that state of play.

I was seriously worried that I had kidney problems for the first time (rather than a previous slight infection) because of my inability to get pressurised. I dozed and tried to drink throughout the week-end but I found it very difficult and very frustrating, feeling lifeless, extremely tired and listless.

I drove in to the hospital this morning, which was, on reflection, stupid (Janet is a wonderful driver) but I desperately wanted to take my mind off the 40 minute journey. When I got there I tried drinking the cold water from the dispenser and was glad to achieve a couple of tumblers. The nurses were marvellous. A soon as I told them how I felt it was all business… temperature, two kinds of blood-pressure (sat-down & stood-up), bloods, checklists and a lovely Romanian Doctor. The tests came back showing the possibility of a slight infection but nothing worth treating… Hg okayish, platelets down but nothing to damning as yet (re-check Thursday) and no sign of anything un-towards with the kidneys in general. 🙂

So general relief and a nice dose of Velcade for dessert.:'-(

But I still feel as if I've done several rounds with a pit-pony, still wiped-out and still finding it difficult to garner enthusiasm for drinking as much as I should (but I am persevering).

I'm certainly not like me and I'd like me back thank you very much.:-P

Perhaps it's a stage I'm going through. 😀 🙂 😎

Dai like Eyeore. 😉

[gina45Participant]

I cant imagine how it must be going through such a awful thing. But you are always positive Dai and you make others feel positive with your support.
You are all allowed you downsides to the treatment and you seem to have been through the mill.
You take care of yourself and hopefully you will start feeling like you again very soon
Gina xx

[AMcGuireParticipant]

Oh dear, bless you … Eeyore, 😀 it was Pooh that got John 😛 lots and lots of Pooh! >:-) on his cycle 2 of Velcade.

It certainly is a harsh drug Dai, but heavens the results seem to be fantastic if your body can handle it. I do hope you'll soon be feeling like your old (or new) self soon.

You are such an inspiration, always finding the positive in the negative scenario. Your team there seem to be on the ball, thats fantastic. My John started at his new hospital today and I have to say so far so good, they were marvellous. He's off to the hospice tomorrow however as still not doing so well and is a complete rambling looney on drugs – has no idea who he is, where he is, its so sad watching him struggle trying to put a sentence together. Anyhow, pain management at the hospice is the order of the day. As for Velcade, well its still on hold for John, but hopefully on the cards again soon as his bone pain is terrible just now, bless him.

Hope you'll soon be bouncing around like Tigger and avoid Pooh Dai, Eeyore always was my favourite 😉

Sending healing thoughts and love
Angelina xx

[DaiCroParticipant]

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.

[brochoParticipant]

Hi Dai glad to hear your Eeyore moment is passing , you really would be superhuman if you never felt down and I know what you mean about pain v sickness give me pain everytime too!! Heres to a better day tomorrow but if you do still feel lousy ring your docs it really isnt worth suffering in silence and perhaps a small adjustment to the dose would help love Bridget Heffaalump xx

[MinParticipant]

Hi Dai,
sorry to hear your not feeling too perky, Hope it gets better soon. Peters soda stream was bothered by velcade and his GP gave him some rather nice tablets that returned it to normal. Think they were something for an enlarged something or other you men have, it did work a treat so if it persists see your GP he did tell them on the day unit but they were not too bothered, as the tests all showed no problems.
GPs are more used to dealing with day to day problems not related to the mm so might be worth a try
Min

[DaiCroParticipant]

Thanks Bridget and Min,

You know its true about the everyday things re: Consultants and GP's. I am given checklists to monitor all sorts of aches, pains and general condition but who monitors them? I was started on Velcade and then given a 6 week consultancy appointment… I would like to think that someone pores over the results and bloods etc but I don't know when… or who. When I had the one bad PN attack after week 1 the only person available to discuss it with was my lead nurse… who suggested upping my gabapentin levels with my GP???. I have also had this CT scan without any indication of who or when re: the results.

I do have these Q's for my lead nurse on Thursday (end of Cycle 2) because I would like an update. I thought an update after 2 cycles would be reasonable… but who monitors the houses inbetween… so to speak?

Dai.

[brochoParticipant]

Hi Dai I have been pondering after reading your reply Waiting for results of x-rays , mri and ct scans can get frustrating as Uch wait to discuss it in their meeting before telling the patient As for the overall results bloods etc and well being , tolerance of side -effects I have great faith in the nurses at the front line giving us the drugs Often they have spotted a potential problem and either got the doctor to see me or spoken to them for advice So I dont feel too badly off in that regard Hope today is a good one for you Dai love Bridget x

[DaiCroParticipant]

Morning Bridget,

I still feel wiped out but in a sort of 'wiped out but with it' sort of way… which is rather nice compared to the last few days. 🙂

Dexed up, so anything's possible.8-)

Dai.

[BADGERParticipant]

Dia

I think you are allow an eeyore moment now and again the only problem with MM with me at least is every twitch ache and pain is it MM, not usualy but it s the first thing that goes through the mind I am glad you are feeling a bit better today it does sound as if the treatment is staring to work which is very good news 😉 😉 😉
Lots 0f love Jo xxx

[DaiCroParticipant]

Hi Jo,

If the treatment truly is working then the side effects can enjoy their field days with immunity from my tongue for ever. There are side-effects and side-effects of course and if the medics have got something they can give to ease, unblock, block, badger or blast away then gimmee and gimmee now, lots of it, big spoonfuls, ladles, that wooden spoon I saw once at a country fair somewhere oop north, I forget where but it was a girt big spoon… as a matter of fact I'll have it converted with a girt big tiny one at 'tother end, lke those given with Oramorph (I always use the big-end, just in case mark you so the small end will be for balance and show only).

But the genuine side-effects, the ones that show that the poison is hitting its mark, blocking the cells and making their poisonous little minds explode… I'll take them and I'll laugh in their face and say 'do your worst you turgid wastes of space, I'm not afraid of you, go on, out in the garden now, puttem up, puttem up'.

Dexed? yep. Feeling better, much. Jumping out of bed and laughing at he world? Nope, not yet… but if you don't mind I'll stay where I'm comfortable, trust in the meds and enjoy a little giggle at my own expense 🙂

Much love all.

Dai.

[tomParticipant]

Well My friend Dai, you want a whine/moan or just a plain old complain then you my friend are due to have one, as most of us know its hard to be tip top all the time, and to be fair its hard to be tickety boo when you are on the drugs:-S

Good Luck Dai and moan when you want (you do it so well for a novice) your upbeat manner will soon return and yeold Dai will be back 😀

Onwards and Upwards

Tom 🙂

[zasrsParticipant]

Hi Dai

Sorry to read you are soo wiped out, horried drug velcaid, gordon had wonderful results with it, hope the dex does it's work and you feel better soon. Glad to hear nothing too horrible was found!.

Hundred Acre Wood just up the road from where i live here in Sussex, not to sure where eyore is today!

Sarah:-D

[DaiCroParticipant]

Thanks Sarah,

The dex does help (Dex free day today) but this has been my worst week for being wiped-out so far). Still, one more V tomorrow and then the free week to get me to the end of Cycle 2. I am hoping for some interim results then… and if it is proving to be working then bring it on – and I'll drag my sorry a**** through as many cycles as it takes to get me fit and free from MM for a while.8-)

Dai – not quite Tigger yet but striving.:-)

[DaiCroParticipant]

Well, that was the week that was, that was. 🙂

Had my 4th and final VJab of this, the 2nd Cycle… one dose of Dex tomorrow, a few down days and then hopefully a week of building up and feeling good. 😀 😎

I'm back for the 3rd Cycle on Monday, 20th June… with a consultant's meeting first, where I will hear of any interim results. I am hoping to see some positive reduction that indicates a nose dive towards 'Complete Response'. My consultant has told me that if/when we achieve CR she will authorise another 2 Cycles as top up/beat down.8-)

No chicken's being counted here and no holding in of breath… but my body is exuding a susurrus of quiet confidence… 😉

What else is there amongst such uncertainty? 🙂

Dai.

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