[AliParticipant]

Hi Helen,

Well that sounds great! Dont think I could actually camp, we have a touring caravan which I absolutely love, being in a tent just seems too much like hard work. Im abit of a clean freak so could not cope with all the loose grass and mud, would drive me crackers! I have never been to a festival either…may put it on my list, but for now watching it in the comfort of my living room seems fine!

Family holiday is a cruise, we were trying to think of something that would suit us all. Dad at first suggested a villa somewhere, which would be great but Mum and I would be on the go all the blooming time, you know cooking and tidying. Then we just thought of a hotel in the med, but Mum and Dad arent much for sunbathing. So by going on a cruise we all get pampered, there are clubs for the kids, Mum and Dad can spend as much or as little time with us, as they choose. The best bit is though I get to visit places I always wanted to go! Athens, Istanbul:-0 (oh dear at the moment) a couple of Greek islands so we can have a splash in the sea. It all just sounds great!

How are you doing?

Ps My Mum found out the other week that her cousin (who lives away from us and a part of the family that we dont hear from very often) also has Myeloma, strange that.

Love Ali x

[AliParticipant]

Hi Helen,

How are you? Are you glamping or camping?Glastonbury lucky you, hope you have some fabulously decorated wellies.

Mum and Dad are still away. Gone for 17 nights. They are having a fabulous time, long overdue. Vicki and Colin, I would urge you to book something, it sounds like the best medicine for my Mum. I think she was even tipsy when she phoned last night:-)
Listen to Helen!

We are doing the family holiday in October, can't wait.

You are posting in the early hours, is that the dex?

Love Ali xx

[AliParticipant]

Hi Tom

Well done for collecting those lovely cells:-)

I remember this time last year, my mum went through all of this. It seems like ages ago. The bone pain she experienced was immense, she says worse pain than being in labour. Poor you for having a reaction to gcsf, but at least that's another hurdle jumped and cleared.

I dont think a&e ever know what to do with haematology patients, but my mum always welcomes the isolation room:-)

Hopefully, it won't be long until the transplant and then the road to recovery.

Love Ali x

[AliParticipant]

Hi Pauline and everyone

I have read through the comments and thought I would add my two penneth.

Every consultation my Mum attends we all troop in to the office. Mum, Dad and I. I call us "The Committee" At the begining of our journey I would sit, more in the corner, with the Myeloma UK diary, furiously taking notes and recording every detail, then when we got home I would write up the notes and check that all bloods were within range. If the next month things had changed slightly we would start to worry and we would pore over the results. Mum has always said she wanted only limited information, she rarely asks questions. Dad and I would chirp in occasionally.

After Mum had her SCT last year we were really disappointed that her PPs reached 0 and then went up to 2, we were told not to concentrate on the actual figures but that the figure remains stable. Mum also decided not to have a copy of the letter thats sent to the GP, again incase she reads something she doesnt want to see.

I now understand why she does this, its her way of coping. So now when we go to see the consultant we are just told "things are within normal range" and not given any specific data. This works for Mum and I feel easier about things too. We are not bogged down by the numbers, and if we dont know, we cant worry about them……can we?;-)

Thankyou for your comments Helen, its nice to hear it from the patients point of view. Im guessing this is kind of how Mum feels. All I want to do is support my lovely Mum and be there every step of the way.

Hope you all enjoy the lovely weekend ahead:-)

Love Ali x

[AliParticipant]

Well done David,

May I suggest you don't book a ski holiday then! 🙂

Something to look forward to, great. Maybe you could get 1 or 2 brochures to get you in the mood.

Love Ali x

[AliParticipant]

Hi Vicki, if you need a chat/rant let me know and I will send you my number 🙂

[AliParticipant]

Helen

Hehe I wondered what had happened to the head! Jumper is right up my street, its a beaut, you are very clever. I may see if my Mum fancies taking up knitting. I remember when I was younger she would start something, then it would be stuffed behind the sofa untill my Nana fished it out and finished it off!. I hope you are having a better day and have found the correct anti sickness medication.

So, Mum went on the cruise last Friday and I am lost without her! Im so grateful she is able to go away and like everyone on here deserves to go away. She will be having a whale of a time im sure.

Vicky, do you not just fancy biting the bullet and just booking something? I feel you need to be making the most of this time in remission. Just go for it!

My emotions are still all over the place, however, I am trying to put Myeloma inside a little box in my brain, only to be fetched out when necessary (not as easy as all that though). Mum in herself is doing really well, very tired at times ( though I do think thats just Myeloma in general)and alot of the side effects from taking Revlimid/Vorinostat are easing.

We are all going away together in October and I cant wait 🙂

Helen, cant you book to go to Cornwall? or does the treatment schedule not offer you enough time?

Hi San, hows your Mum doing?

Love Ali x

[AliParticipant]

Hi Tom,

I'm sure all will go well, do you have to stay in hospital?

Love Ali x

[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

[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

[AliParticipant]

Hi Jill and San

Im not sure if the risk is just for maintenance treatment, as I suppose potentially one could be taking it for a longer period of time?

Worth the question though.

San, isnt it awful sitting and waiting around in hospitals, its like torture, especially when you are really not feeling up to it. I hope they get to the bottom of your Mums jaundice soon.

Love Ali x

[AliParticipant]

Hi Scott.

My Mum got 8 million or so cells in the one sitting, enough for 2 transplants.

Good luck with it all 🙂

Love,Ali x

[AliParticipant]

Happy birthday to you, happy birthday to you, happy birthday dear Frank, happy birthday to you.

Love Ali x 🙂

[AliParticipant]

Hi Emma

Its lovely to hear your Mum is at home after such a long time in hospital, and that the treatment has been worth it 🙂 Is she very mobile now?

I know its bittersweet, but you have to have hope dont you? Im trying to push it to the back of my mind, and there are days I dont think of it at all! Enjoy each other, every day. Thats what we do….

Love Ali x

[AliParticipant]

Helen,

I'm so sorry to hear its a relapse. You are more than entitled to have an all over the place head. Once its straight again , focus and give it some wellie.

Like Tom, I'm sending a very large hug your way.

Flipping heck, you feel so well too, what's that all about?

Love Ali x

[Author]

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