This topic contains 73 replies, has 10 voices, and was last updated by 
Ali 12 years, 2 months ago.
Happy Birthday Ali hope the sun shines for you all Today
Love Tom and Elaine xxxx
Happy birthday Ali,
Hope you have a great day and your mums feeling good to enjoy it too xxxx
Vicki and Colin
Hi Ali,
Hope you had a great birthday. Wondered how your mum was doing? Colin has had a rough day following his cyclo priming, but is eating quite well so I'm happy 🙂
Vicki and Colin x
Hi Guys,
Thanks for the birthday wishes. Helen, you were right – we took my cake round to Mums and we all stuffed our faces with her watching on!
Just a quick update on Mum. She is slowly but surely improving. Shes eating a little better, her mouth is not so dry, still taking her anti sickness – but not so many as before, tummy troubles are not so bad, still got an acid burning, but gaviscon chewable tablets seem to help a little. They came for a ride into Derbyshire to meet up with us over the weekend and it was lovely to see her out, although she was exhausted afterwards and yesterday she and Dad went for a walk around a lake near home and although her legs felt like jelly she was glad to have done it. I notice the silly things, like when I phone up she has now got her "normal voice" on and not the "poorly voice" – last week she was pretty down so its lovely to see her more positive.
Hospital this afternoon, hopefully she will get a date fot taking the Hickman line out, it cant come out soon enough for Mum. Shes also going to check on what she can and cant do ie mixing with others as shes feeling abit isolated.
Right thats enough of me babbling on…
Love Ali xx
Ali,
That sounds very positive progress for your mum. Glad to hear she has got out a bit. That must be very heartening for your mum as well as the rest of the family. Your mums sounds like a real trooper. You must all be very proud of her 🙂
Vicki and Colin
Hi Ali
Am pleased you had a great Birthday and am Pleased your Mum is getting better (no rush though) your Mum will still need to rest often to help heal.
As and when Mum checks what she can and cant do I hope she is still able to recieve "Cyber Hugs" as I am sending some more
Love and Cyber Hugs ((hugs)) to you both
Love Tom "Onwards and Upwards" xxx
Hi Ali
The down feeling is very normal, after everything and all the hype, suddenly you have to pick up the bits and try to put life back together, it's not easy. Keep reminding her that she's been through so much she's allowed to feel 'off it ' a bit. Just not too much though….! they will offer counselling if needed, and it might be! Remember too that while the docs are often very encouraging , they just look at the results and if you still feel terrible there is nothing much you can do. Slow and steady eating and exercising is the key, I walked for about 30 mins every day from the beginning. That leathery feeling in your mouth is horrible, I've become addicted to jelly beans, (though some flavours are gross), you can suck them for a long time, I found they helped.
About now she should be able to go out and about but I'd keep away from public transport and people with obvious coughs and colds, after all hospital waiting rooms are full of people…..
Anyway glad she's improving and that you had a good birthday and a bit of a holiday before the new term starts.
Love Helen
Hi Helen, Vicky and Tom
Yes, im so proud of Mum, the difference in her from last week to this is amazing – even she is noticing the small things.
So, yesterday we went to clinic. They are happy with bloods, hickman line to be taken out next Monday and then she will be discharged from Nottingham back to our local haematology unit. She will be randomised at the 3 month stage, there is now a new drug that may be available on the Myeloma 11 trial (version 5) called Verinostat. to be used in conjunction with Revlamid? so we will wait and see which arm shes randomised for. We were told that the effects from Melphalan do not stop for about 8 months and so we will not know if its all "worked" until the 3 month mark.
Cyber hugs are definately allowed and I will pass them on later!:-) as are real hugs from people without bugs! Out and about is fine at "off peak" times. One thing we didnt ask about is driving….when did everyone start again?
Am going to fetch some jelly beans for her Helen, I wonder if she will wrinkle her nose up?! If she does I know 2 kids that will eat them with gusto!
Right, off to iron the mountain of new school clothes, roll on tuesday for the new term:-D
Love to you all
Ali xx
Helen, hows work, are you up to "full speed" hours yet? x
Hi Ali
Well am pleased your Mum is getting stronger and Hugs all round are OK 😎
Am sure your Mum will feel better with the line out, and less chance of infection:-D .
I came out on the 16th Dec and was driving the following day (not far though) but I had my Line (Femoral) taken out the day before I came home.
I bet those two Kids cant wait to hear the nose was wrinkled up ha ha
Same again for me Ali Please a Cyber Hug to that Brave Mother of yours.
Love and Hugs to you all
Tom "Onwards and Upwards" xx
Hi Ali,
Great news, your mum seems to be doing great…..and glad to hear slow but sure progress. With of course a little bit of resting in between…. At least the weather is quite mild now, so hopefully there aren't too many about. I've got this image of you being surrounded by ironing and the kids up to their ears in jelly beans! Result for the kids if your mum doesn't like them!
Keep the progress going. Colin has had his second gcsf injection (started Wednesday night). He has not had any pain yet. When did your mums start…..worry bead going, no pain no stem cells? 🙁
Vicki and Colin x
Hey Vicki
If only you could have seen my mountain of ironing – I think I would have prefered doing the painting!
Pain I think on day 4, please dont start stressing about not getting pain though, as you know everyone is different. It wont mean no stem cells, im sure:-) Keep us informed xx
Hey Tom
I think Mums going to have a try at driving tomorrow and like you say will be better without the line as thats the side of the seatbelt rests.
As for the cyber hugs I do feel you deserve one or two back as you are always there for us all, thankyou xx
Hi Ali
I think the jelly beans will sit on the side for a while, but she will share them I'd say:-) And they are small so you can keep trying them until they taste right. I drove from the 3 rd week, but I didn't have a line in, even now though I don't like driving more than about 30 miles as I can't concentrate well enough, I'm still struggling with reading books!
Work…. Well I'm back to full time, 8 weeks now, it's tiring and a bit stressful and I'm a bit bored because I can't do some of the stuff I did before, but I'm seeing patients again and I don't feel too bad really. I've got a really bad cold and cough which i hope will go away without resorting to antibiotics but I'm not holding out much hope. In some ways work is a really good distraction and then I find myself feeling wobbly and can't understand why, then I remember and wonder if I'm ever going to forget for more than a couple of hours just what is wrong with me. So, I'm still trying to get my head round it all, even after 18 months.
To put it into perspective though, today I attended my neighbour's funeral. She was 48. Her shockingly sudden death from an intracranial bleed has left our community reeling. She leaves a devastated husband and parents and 4 children, the youngest is 8. Coming to terms with myeloma is difficult to cope with for both carers and sufferers but we do have time to tell each other how much we love, need and care for them.
Sorry to be a bit miserable, I'm going to return to major optimistic mode now. Look after that mum of yours and get that ironing done!:-)
Love Helen
Hi Helen
Sorry to hear about your neighbour. Very sad. A similar thing happened to one of our friends 12 months ago and it has taken some time to get our heads around, certainly his wife!
On a happier note very pleased to hear you are back at work full time, even though boring and with wobbles…..that is progress?
This mm thing really does take some 'getting used to' from everyone's perspective!
Take care x
Ali,
Thanks form your advice….you are right. Everyone is different!. Colin says he feels quite under the weather tonight, and does look a bit peaky, so gone to bed already. Praps it's those stem cells!. Hope you have finished the ironing by now!
Vicki
Hi Vicki,
I hope the stem cells are causing Colins "under the weather ness". The ironing is all done and kids are good to go!
Hi Helen,
What an awful thing to happen to your neighbour and certainly helps to put things in perspective doesnt it? You are right, at least we have the chance to show each other how much we care. My heart goes out to that poor family.
Do you ever think you will forget about MM for more than a couple of hours? I sincerely hope so. Im only the daughter of a sufferer and I cant switch my mind off to it completely. Its nice that you are seeing patients again, but I bet you are cream crackered by the end of your shift.
My Mum is doing ok, if only she could get rid of the blooming acid, its really painful and is making her vomit every now and then. She says she even feels her tears have an acidity to them. Shes been prescribed another tablet to see if that helps (cant remember the name!). I hope it goes soon as if it were not for this blinking acid she would be doing brilliantly.
Love Ali xx
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