[sanParticipant]

Hi Helen, its so hard to have to wait that long when you feel poorly, must be a better way! Mum's next clinic appt is due soon and usually they want you to have bloods taken before noon and the Dr appt is about 2.30, she is normally running late so last time we went in at 3.15 and the had to wait nearly an hour for the prescribed chemo so gosh we are talking 4 hours plus, and she was so ill, not really fair, i will have to talk to the nurse next week about how we can do this differently as she just can't take it, love to you and so pleased that you are still able to work whilst on the velcade, pleased to hear that you have a lovely Aunty, bet that she loves your jumpers in the winter, but gosh we are having some great weather!! you will have to do the Cornwall hol again soon Helen!, hope that you are feeling okish,San xx

[HelenParticipant]

Thanks San I'm having a better day today. Re day case units?? I can't understand why it is so difficult. I suspect not enough people have put pen to paper for fear of making a fuss! And I think they arean area which has evolved and not been planned. I'd like to hear from any one who has attended a really good chemo day unit , tell me why where etc and also if anyone has been to the Cromwell ……. They might like to private message me for fear of us all feeling acutely jealous as I have heard that there……….it is fab…..u….lous.
I'm amused by the aunty thing, I did have a lovely aunt who knitted for us. Now I am the aunt knitting for everyone! She'd be amazed! Just shows what goes around……. 🙂
And yes the weather is nice here too though I'd love to be in Cornwall again… I just love it. My favourite place.
Hope mum does ok next week where is she at with er treatment now?
Love Helen

[mhnevillParticipant]

Hi Helen

So sorry things are so difficult for you. It isn't fair that the service is so poor and the waiting area so uncomfortable.

I know that both Chemo Clinic I have attended were refurbished by private fundraising! I have just transferred to Bradford Royal Infirmary for my infusions. The Haematology Day Unit is very well organised. Whenever possible your drugs are waiting for you. Amazing thing is, I know it is small, but I have yet to meet another Myeloma patient!

I do hope you are feeling better soon.

Love Mavis xxxxx

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

[sanParticipant]

Hi Helen ahh glad that you are having a better day, well dear Mum is still jaundiced and we have a CT scan tomorrow to ascertain what is happening to her liver, we are not sure of the cause but could well be the drugs as she was on an anticonvulsant as well as chemo but is now off all meds and not sure when she will have chemo again and even whether she will continue on the trial, she is very tired, we had a family BBQ today and she so wanted to come but rang to say that she is just too exhausted, we miss her terribly at these things and it is'nt the same without her but she wants us to carry on as normal ands so we try to.We are in limbo at the moment but will know more over the next couple of weeks, thank you for asking, wish i had the answers can just hope that her liver will slowly recover as the drugs leave her body, she was doing really well on her chemo before this so hope that its a blip. take care Helen hope that next week is good for you love San xx Hi Ali so glad to hear that Mum is on her cruise and i would guess having a super time, bet that you miss her too but she will some be home to tell you her wonderful stories, love to you San x

[VickiParticipant]

Hi Helen,

Glad you're feeling a little bit better, Cornwall is the best place in the world; back pack, coastal walk, Cornish pasty, glass of Chardonnay overlooking the sea…..what more can we want? Colin and I really must get away but he doesn't seem to be able to string a full week together being well! And when you're like that there's no place like your own bed. We will get there damn it!

Hope the knitting needles are still clicking!

Vicki and Colin x

[andygParticipant]

Hi Helen.
Welcome back to the joys of Dex!
I've been busy catching up on the posts tonight as I've tried to ignore MM the past couple of weeks – don't think I quite managed but I did try.
We had a great time relaxing in the the sun for a week in Greece and I managed to get back without bringing any bugs with me this time – a result! After last years trip. Spent last week recharging my batteries hopefully for another trip somewhere sometime.
I was back to earth with a bump Thursday with blood tests, zometa infusion and a carrier bag full of drugs for cycle 16. Friday saw me at a pre-admission clinic re me back op. then we went down to Nottingham for the weekend the help Steph's dad celebrate his 80th. I start my cycles on Sundays so I'm having my first Dex night.
I can't remember to much about my velcade experience, I was on PAD, I only had 2 cycles if I remember correctly with no response. I had it in the olden days when you received the velcade by infusion. I can't remember how long my appointments took but because I was on PAD I had a Hickman line in and that needed cleaning and I also needed my doxorubicin bottle to be fitted so that passed the time. I do remember the seats were comfortable in the chemo day unit and we had a conservatory to wait in and we had a plentiful supply of free tea, coffee, juice and even free water!
I think the size of the chemo day unit and hospital will have a lot to do with the waiting times. Our hospitals day case unit is small and the chemo day unit is not too much bigger so I think maybe its a bit more of a personal service and you don't get shifted to a waiting room whilst waiting for blood tests. You get to chat to people because your next to the same group of people whilst your there. My monthly zometa and blood tests usually takes about 90mins – 2 hours if a consult is thrown in.
That's my Dex fuelled ramble done for the night I'll check this post in the morning to see if it makes sense.
Whoops almost forgot we're both wishing you well Helen with your velcade experience and hope it works well and you don't get any of the dreaded PN side effects.

Every day is a gift

Andy & Steph xxx

[HelenParticipant]

Dear all
On the up again after the first Velcade cycle seemed to drop both my mood and temper somewhere else, so thanks to all of you for your replies.
Hello Mavis
How are you doing ? A bit better I see as you are back to doing some services, this must please you a lot. I'm finally feeling better today, not that it is too bad so far really, but adjustments are always difficult. It's all the tummy and gut trouble that causes me grief but if it works then….it's worth it in the long run.

Dear Ali
your mum must nearly be on her way back, I expect she's had a great time, she needs to book the next one ASAP so she has holidays to aim for. ( I have Glastonbury to take my 2 to at the end of the month and we will have a family holiday for 3 days buying the camping equipment and stuff! Hey ho not quite buckets and spades but fun -) re the knitting … Thank you Gemma was very pleased with her jumper but I confess there is the wool for at least 12 jumpers hiding behind my sofa.! I call it extra insulation! Just hope I have hands that work for long enough to knit it:-P

And Vicki, don't worry I plan to get down to the West Country again this year but after the schools are back I think! You must book a holiday, do it now! Don't leave more than 2 months between booking and going so you get insurance easily but do it now. Let me talk to that Colin……. He might not realise it but HE NEEDS A HOLIDAY….. Can he hear me shouting at him yet? I have loved my holidays more than I ever realised. They are so precious to me now, that's why I'm having lots. Our poor cat doesn't know who he lives with now as so many different people feed him these days!

Yassou Andy and Kalinikta
I love the way you and Steph have just got on with things, you are definitely my hero as you give confidence while on all that medication, and I'm very envious of our chemo day unit. Sounds way better than ours. When do you have your op? Got a date yet?
Vecade is ok ish so far. Will Steph bring you up to Newcastle for an hour or 2 one day soon? We could meet for coffee?
Love Helen

[andygParticipant]

Hi Helen
That's my first week of my latest cycle complete so I'm over the ups and downs of Dex though I've just taken my latest cyclophosphamide tablets 😛
Glad to see everyone enjoying the sunny weather we brought back from Greece with us 😎 Yep I'm taking credit for the good weather lol.
I haven't heard anything from the hospital about the op yet – I thought I would of by now – hopefully a letter will be in the post this week. I'm not looking forward to it as it means an overnight stay in hospital. I've managed to avoid doing that for over a year now and I'm not keen to renew the acquaintance with hospital food.
I'm glad you and velcade seem to be getting along ok and hopefully it'll do the business for you and you get everything back under control again. I must say I find it hard to believe you are still managing to work! What a trooper. I find it very tiring just doing the garden a little at a time. Hmmm what I should say is I find it tiring supervising Steph doing the garden.
I will have to chat to Steph about popping up your way for a coffee soon it would probably be a weekend if that's ok with you.

Take care Helen
Every day is a gift
Love Andy & Steph xx

[HelenParticipant]

Hi Andy
That would be good, maybe somewhere halfway, I'm away the week after next so perhaps the beginning of July?
Love Helen

[eveParticipant]

Hi Helen

I have just been looking at your reply to Wendy,and you mentioned something that has also come up in the bloods,you have at least got an explanation,I just get told not to worry although I have asked directly the question of another disease !!

Slims bloods are now showing IgG plus IgM bars,how much or many I do not know ,my reading on it is another blood cancer walderstomes, not worried so much about it,you get to the point,what the heck,can you throw any more at us,but I would have liked Slims consultant to have explained a little about it rather than tell us not to worry!!

I would be interested on your opinion as I have done the research,asked about it from the professionals, I have not mentioned it on here before as in my opinion,its a new path!!? I think the IgG and IgM has only taken place since the SCT meaning to me ,it's another blood cancer in the making,but when you get told no its Myeloma and do not worry,we're do you go. Eve

[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

[HelenParticipant]

Dear Ali
Sadly I think Glastonbury is a step too far for me now and it would have been glamping, but no couldn't get a ticket. My children are going so we will take them there and have a few days in the Mendips together where I have booked a cottage. Then we drop them off and I watch it on the telly! I've never been… When we were young we went to our local city hall which was a fabulous rock venue, I remember Glastonbury starting but it was such a long way away and we saw much the same bands as played there they just didn't have the venues for big concerts in the south west. I've watched it grow though and now with 2 musician children attending I have such a soft spot for it.
I'm so pleased your mum seems to be having fun, make the most of the October week, where are you going?
Love Helen

[HelenParticipant]

Hi Eve
I think this might be a question for Ellen too as I'm not fully clear but this is my take on my condition. And I'm at the point where I need a few lectures in haematology to understand much more of it! 🙂
At some stage the switch mechanism in the stem cells for my IgA cells was thrown and a few abnormal ones produced, and a few more lambda light chains, also there were a few Waldenstroms cells (I understand this disease is characterised by IgM cells, but I didn't question it that closely) and lymphoplasmacytic cells too. On BMB around 50% of bone marrow cells were standard MM IgA lambda. With some of all the others. This is where diagnosis becomes difficult and why symptoms can be so varied. But I have always known I had a mixed picture. I'm not sure it makes much difference, which type it is as because its all based on immune system cells. These cells change and it is difficult to track their changes, there is a high incidence of secondary blood cancers for this reason. BMB is localised to a small spot and may not pick up all the cells altered or altering. It's also not uncommon to have other abnormals cells floating around quietly for a very long time, as in smouldering myeloma. The theory is that we all smoulder for a long time before floridly developing the disease. I think I had it for 5 years before.:-/ Whatever the trigger, and we have no idea yet what causes the disease to start or advance, it seems still a long way off that there will be any real developments here, maybe David is right, and agrochemicals and petrochemicals and radiation and hair dye! are to blame but who knows, there are not many of us affected and where would we be without all these things. I look back and I know that medical advance has saved me as a child with antibiotics and as a young woman in childbirth, I've reached 59 and plan to be here as long as possible I will test all the drugs I'm offered. 😀

I'm looking forward to hearing what goes into your big black book. 🙂 I sent my letter off today about the day unit! Watch this space, ooh the dexamethasone has spoken!
Take care
Love Helen

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