[AliParticipant]

Hi Helen,

I hope you are feeling ok today:-)

Your grumbles about the department made me smile (especially the bit about the loo) best thing I find is to put paper down first and the trickle cannot be heard! I work in a hospital and a colleague and I have tried this,one in the loo while the other stands in the corridor listening! We do actually do some "propper work" honest;-)

Crikey, you are going some to half knit half a jumper, would that be the dex?

O oh, kids feet upstairs…..breakfast duty begins:-)

I hope you have a good day Helen.

Love Ali x

[PerkymiteParticipant]

Well Ali it is nice to know that this has been properly researched 😀 😀

Kindest regards – vasbyte

David

[HelenParticipant]

Dear Jean, Eve, Tom, Ali, Megan and David
Am now putting all comments re clinics in a letter, and have contact name for someone to address these issues with, hurrah for dex! 🙂 and Eve I have new iPhone for birthday so have note pad with enormous memory and sat for 2 hours today making copious notes. I did tell them what I was doing and I expect that as a direct result if this I will be in and out in 20 minutes next Tuesday, 😀 >:-) I was of course as charming as possible today and politely declined the big noisy room in favour of the side room and the cup of tea! Then rang specialist nurse for chat so she could observe slowness, cunning eh! :-0 all in all ok though but took 2 hours 30 mins. It is also interesting that this happens everywhere but these are issues being addressed now. I will keep going.
Re the Knitwear Eve, I have system here, I invited family to buy their own wool and patterns, that way they would have vested interest in said garment and might wear it, and not just finding me things to do! Only provision is really good wool and no time frame for me in case i was more ill. As house is now so well insulated with bags of wool waiting for me to knit up, I am still offering same service but time frame is looking like a year now………… Of course if I gave up work I could have side line:-D

I'm ok after 2nd Velcade but really feeling 3rd dex, should stop writing now as brain is running so much faster than fingers I'm unable to keep up. Had visitors round tonight, couldn't get word in edge ways I couldn't stop talking:-S
Love Helen

[eveParticipant]

Hi Helen

Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!

The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they will not make it up until you have signed in, and you are lucky because you are subcutaneous the other way the procedure is at least 30 minutes and hours waiting round. I think it is Dai,s hospital the whole procedure from bloods to Velcade takes only 1 1/2 hours. In Slims case we said hello to staff walking in and we were often saying goodbye to them going home,this is when I took up rally driving,:-P

Slim starts REV. Soon, but told them we are having a holiday first,So new van packed,hope now to get off on Sunday as Slim just about finished,fatigue ,bone pain ,big ones.hoping a bit of sunshine will help…8-)

Using CRD until knocks Myeloma back then maintenance until it does not work,Claxane injections daily plus BMB every 2 cycles to monitor Myeloma,that's the order of the day.:-(
New system in place at hospital so hoping to see progress ,I am going to make sure that we spend as little time as possible in the unit,

I stopped knitting years ago,Slim could not stand the clicking of needles then,so would not stand a chance now,since Myeloma he has become sensitive to noise,

Time to finish packing van,looking forward to going to France,Keep well love Eve

[HelenParticipant]

Sadly Eve I think you could be right but I live in hope! You make a good point about noise, I'm much more sensitive to Noise now as well, I'm up looking for the source of irritating noise at all times and also get driven nuts by music, which in a family of musicians can be a little wearing. i wonder if that happens to more of us, if so it would explain our irritation with clinics.
i do hope the holiday is fun and relaxing, with lots of sun.

Ali I'm taking the tissue issue on board but won't make it part of my recommendation 😉 incidentally to be really yuk here but as a hospital person you won't mind( I'm not sure about the rest of our readers however) when my daughter was little we stayed in a posh hotel where they had no toilet brush in the loo……. She discovered that lining the loo with tissue meant no dirty toilet……
Love Helen

[VickiParticipant]

Blimey Helen,

I was just going to do an email to see how you were doing and If you had started treatment…..yep I can see that you have and that dex is doing its magic :-). I so hope we don't have to spend any time at hospital any time soon other than the 2 monthly check up! 🙂

Glad things are going reasonably well, and sorry for the other ups and downs. Hospitals vary so much from hospital to hospital. I'm sort of a lesser version of eve, ask as many questions but a little less potent (sorry eve in a nice way :-)) after Colin's sct he's still very tired a lot and had a burst of gastro acid resulting in these tummy pills again…..and me I've decided the shocks hitting me after it all as I feel very emotional and unsure of the future…scared and a bit like I want to grab this b disease by the scruff of the next and kick ax! Still can't be helped 🙂

Hope you are okish Helen….knitting eh? A new skill post myeloma or always been good at?

Ali, how did your mum get on, on the cruise? Hope she is well 🙂

Vicki and Colin xx

[HelenParticipant]

Hi Vicki
Thank you, I'm doing quite well really, tired of course but I'm feeling ok. On the dex down day so have sloped off to bed leaving the husband and neighbours carousing in the garden, I feel they have had enough exposure to my dexilicious behaviour over the weekend that they need a few hours off!

I have always been able to knit, and did it reluctantly from age 5 to 23, then stopped as it went out of fashion, my aunt ran a wool shop so knitting was obligatory. I picked up the needles again to do a fairisle sweater about 6 months before I was diagnosed as I felt it made me look as though I was doing something but not using any energy! Since then it has been my saving grace, the more complicated the pattern the better and the most expensive wool you can buy……better again….. Why…… Because if it is expensive and difficult you have to concentrate hard on it, and in doing so you do not think of myeloma, sometimes for minutes at a time. 🙂
Hoping you are able to get away soon and put some holidays under your belt.
Love Helen

[AliParticipant]

Hi Helen and Vicki

Wish I lived closer Helen, would love an aran cardigan/jumper to snuggle in the winter time! Im sure you could knock one up super quick:-) How have you gone on back at work?

Vicky, Hi how are you two? Has Colins energy levels increased a little?. Mum goes away Friday, I feel like I did when my kids started school! How crazy is that? Shes a little apprehensive but so looking forward to getting away. I will really miss both Mum and Dad but im so grateful that they are able to get away after all this time.They will have a blast im sure. Mums doing good, thanks. She decided to come off the Rev/Vorinostat maintenance and is feeling pretty good. I think she has made the right decision for her 🙂

Have you booked any hols yet?

Lobve Ali x

[sanParticipant]

Hi Helen, sounds like those jumpers are fab, have you tried other wool based crafts like spinning, felting and peg looming, bet you would love it too San xx

[sanParticipant]

Hi Ali, just to say that i wish your Mum the best hol, she jolly well deserves it, bet she has a ball, and they will both benefit from it i am sure, just the ticket! San xx

[HelenParticipant]

Dear Ali
I hope your mum has a fabulous holiday, I've forgotten where she was going, was it a cruise? I have loved my holidays recently, we were in New Zealand this time last year and should have been going to Peru this week, maybe next year, I live in hope but fear probably not going to get there.

Nottingham isn't far from Newcastle to visit. As Tom knows we are quite civilised up here! We have electricity and such like and lovely beaches just up the coast for proper holidays with small children, then you could drop your wool off and I'd knit you a pully, mind you my time frame is slipping, I might to give up work soon to keep up with my increasing knitwear business!
I have attached a pic of one of my recent creations. The proviso for me making them is a tasty photo in classical knitwear pose!,,:-)

Hi San
Yes I think you might be right about other wool stuff but I have so little time to do all the things I already have in mind that I'm feeling a bit pressurised by my stash of beads and wool. I did a spot of felting recently and it's very addictive. When knitting goes out of fashion again I will have to give it more thought
Love Helen

[VickiParticipant]

Hi Helen

The knitting sounds well impressive. I can remember trying to knit when I was a kid and yep it looked more like a fishermans' net than anything else. Maybe the knittings not my strong point!, it must be quite relaxing to take your mind off all the troubles and tribulations that all this treatment brings, trouble with me is when I start something I want it finished straight away so get more stressed when doing it, rather than remembering it is supposed to be relaxing! Hope you are still feeling well ish, and it won't be long before Peru I bet ya. A friend from work went…..I would tell you what it was like but she doesn't know either as when she got there she ended up with a blood clot and spent most of her three weeks there in hospital and 6 months after on warfarin!

Ali, hope your mum and dad have a great time. It must be nerve wracking for you all. Colin and I haven't been anywhere, just when we start gaining confidence he has a down dip. Like over the weekend he was reasonable, did too long a day at work Tuesday and now like a wet rag today. It seems like he is either well up or well down. We don't seem to be able to string a few weeks together that is totally good and therefore we don't have confidence to go away. I feel quite anxious at the moment and seem very preoccupied with the future and what each pain, fatigue or issue Colin has as being mm or not. I try not to show it but its hard not to worry! That said we just live in hope that a cracking mm cure will come on line soon :-). Colin elected not to do maintenance treatment as he was fed up to the back teeth with tablets and making him feeling rotten. I think it's all about an individuals body and wonder whether the tablets help or not…..only my thought and no foundation! Mind you there are days when he feels rough now? How's things with you Ali?

Take care Both and keep knitting Helen, is there any money in it…..your new business maybe?

Vicki and Colin x

[sanParticipant]

Well Helen you are so talented, a beautiful jumper! if you give up work you will really enjoy learning new woolly crafts and seem to have a real flair for it, great for earning some pennies too! ps where are the handsome hunks wearing your jumpers for us ladies?? ha! take care San xx

[tomParticipant]

Hey Helen great Photo of you and your Knitting, you look great and your hairdresser is amazing 😀

Lots Of Love Tom Onwards and upwards xx

[HelenParticipant]

Hi San, Tom ,Ali and Vicki
You are kind, I chopped gems head off the pic by accident! The boys are being difficult and won't pose in their jumpers? Unless drunk 😛
I wish there was money in it San, I'd do it like a shot if it'd make a living wage but it doesn't, I can't grumble, I do get the occasional good commission but they are few and far between. Gems jumper is about 60 hours and 800 gms wool. You have to LOVE knitwear to commission it or be very rich. Or have a nice aunt like me:-D

Back to Velcade and chemo unit, said my piece, reported findings from all you people to our day unit, a review is happening. 🙂
Then I waited 2 hours for 8 minutes attention today, on one of those hard plastic cafe chairs, couldn't do anything about it as felt sick when I got there and had to wait for anti sickness tablets to work. 🙁 bad day , very very tired
Love Helen

[Author]

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