[AliParticipant]

HI Eve

I hope that Slim is doing much better now, are things settling down abit for you? Yes, I bet he is really upset at not going into shops!

I find it very hard to take it easy! at the best of times. Im lucky I suppose that I have my two lovely kids and a very supportive hubby at home to take my mind off of things. My work have been good and although im entitled to carers leave:-( are very good and will allow short notice annual leave if required.

Mums also lucky in that she has my Dad. She has already decided where she will and will not go at the moment. No supermarkets or crowded or enclosed spaces. I will watch my kids and any sniffles I will keep them away! I want to be there as much as I can for my Mum, as I know she would do the same for me and more 🙂 We are a very close family and we will all rally round.

Love Ali x

[AliParticipant]

Hi Helen,

I know when Mum was on Rev/Dex she had a hard time sleeping at the right time! Is there a possibility of adding a sleeping pill to your meds? I know Mums planning on asking if she gets the Rev maintenance treatment after SCT. Surely you would feel better after a good nights sleep?. I know im like a bear with a sore head if I dont sleep well at night. Are you going back to work phased return yet?.

Love Ali x

[AliParticipant]

Hi Vicky and Colin

Just wishing all goes well on Monday for your appt with the nurse.

Love Ali x

[AliParticipant]

Hi Helen

I can totally understand the devastation of losing your hair – apart from the chemotherapy it has been my Mums worst fear. We tried at first to find something that matched Mums hair exactly, which of course was never going to happen. So she got one that our hairdresser could cut, but unfortunately she got a bit scissor happy – you know what they are like sometimes. So eventually shes got another one (off the tinternet) one much shorter than her own hair but the same colour. It looks mint, so much so that my auntie took it so that her hairdresser could copy it!.

Thankyou for your words "soon it will be all done" Yes you are right and bring it on.

Your hair looks lovely by the way. Are you feeling better now after your bug?

Lov Ali x

[AliParticipant]

Hi Eliz

Yes Mum is home – hoorah! Tired, but relieved this stage is over. Brave as always! Up this morning making my Dad bacon and eggs!

I have visions of old men coming up to you in the street patting your head! I hope you swatted them away like flies. When I was pregnant the check out lady in Asda said I had the largest bump she had ever seen! – how rude!! (she was probably right though)

What an awful time of it you have had with your back, though im glad it doesnt stop you from getting about and it is reassuring to know you feel "well in yourself".

Thankyou for replying to my post – its very much appreciated.

Hope you have a nice weekend

Love Ali x

[AliParticipant]

Hi Eliz

Thankyou so much for your kind reply. Yes, Mums had her line fitted and yes, there was a bed so as I type now she has the cyclophosphomide running through the drip. Not too much discomfort, she says she could feel the hugging and tugging. She was abit shaky after she had it done, possibly abit of shock but mainly due to hunger! so once she had crammed a sarnie in her she appeared much better. On the drip for 24 hours so all being well she should be home tucked up in bed this time tomorrow.

Thanks for the info about the hair, the hair loss concerns my Mum so much. After looking at so many she has finally found a wig that shes ok with and has scarves etc. I cant believe how much your hair grew in a year! May I ask you how you are feeling now after your SCT? Mums looking forward to a holiday as she had to cancel a carribean cruise last year – I think she deserves a lovely holiday after all of this.

Dai, Mums on Fletcher ward, the nurses are all really nice and they gave anti sickness BEFORE chemotherapy so I hope she will not get much sickness.

Night everyone – Im bushed x

[AliParticipant]

Morning Dai

Thanks for that. Yes we will ask about anti sickness, Mums fear is the chemotherapy, we were told her hair would become thin after 2 weeks or so. This is all very real now. I just hope there will be a bed for her her on thursday so she can get it over with 🙁 As always she is very brave and knows its just got to be done.

Thanks again Dai

Love Ali x

[AliParticipant]

Hi

Thanks Dai for your response

I spoke to Lynne today the specialist nurse (who is so lovely) and she went through the procedure again with me.

Mums going on thurs for Hickman line AND chemotherapy wash n rinse either thurs pm or fri am (hence the stay of 24 – 48 hours) So Mums 1 and 2 procedure is to be at the same time. The only snag is they are very short of beds, so they may only be able to carry out procedure 1 and may have to go back the next week for number 2. I just hope a bed becomes available and she can get another step over and done with. Dai how did you feel after procedure 2? Is the chemotherapy more potent than firstline treatment?

Vicky and Colin, I hope all goes well on 9th, I will keep you informed as I know you are at this stage too.

I cant thank you enough for your advise. I hope everyone is keeping well.

Love Alison x

[AliParticipant]

Morning guys

Thankyou for your replies.

I wonder if I got it wrong then? I could have sworn that they said she would have to stay in hospital for 24 – 48 hours. I do hope Mum can come home then as she hates staying in hospital. I have the email address of the Myeloma nurse Lynne so maybe I should contact her, although I dont like to be a bother.

What happens next?

After Mum finished her last RCD in April this seems to have been a long time coming and we have sort of carried on as normal, the rollercoaster is starting again – I dont like rollercoasters and would like to get off!>:-(

Well, better go get ready for work now, hope you all have a good day despite the rainy weather.

Love Alison x

[AliParticipant]

HI Tom

Such fantastic news for you both! Bet you have had a super weekend! Happy Birthday for tomorrow.

Love Alison x

[AliParticipant]

Hi Dee

What a relief for you and your family. Not surprised you are happy!

Keep us informed of your Dads progress.

Take care Alison x

[AliParticipant]

Hi Penny

Just wishing you the best of luck for Monday and your SCT.

Thankyou for deciding to do a blog as im sure it will help others about to go through the same thing.

My Mum is in 3/7/12 for the Hickman line to be fitted and the process to begin, so shes not far behind you.

Kind Regards Alison x

[AliParticipant]

Hi Dee

I know its all such a worry but as time goes by it does get easier to cope with. My Mum has wanted life to carry on as normal and im learning not to fuss about her all the time. We have our nightly phone conversations about what we have had for tea lol ( my hubby rolls his eyes at this) and dont even mention the Myeloma, and that was all we could talk about in the first few months.

I dont want to think of the prognosis now, just want to make every moment with my Mum count. I feel its given us a chance to really show how much we mean to each other (tears in eyes typing this).

Be strong Dee – you can do it:-)

Love Alison

[AliParticipant]

Hi Dai,

Well done Becky. I wish id had known about the event as I live only 5 minutes up the road!

Sounds like a good night was had by all – lets hope the money keeps rolling in! I will watch out for you all in The Chad next week!

Take care

Alison x

[AliParticipant]

Hi Dee

Im Alison. My Mum was diagnosed last November, we had never heard of Myeloma. I completely understand how you feel right now, my Mum is my best friend as well as a fantastic Mum. She was 57 when diagnosed.

She opted to be on the Myeloma 11 trial and has had 5 cycles of treatment (has not lost her hair) and is waiting now for her stem cell transplant (will lose her hair – gorgeous wig found and scarves purchased). Apart from a few blips along the way shes says the treatment has not been as bad as she feared, and apart from feeling very tired at times she feels loads better now than before her diagnosis. Please dont go looking on the internet about Myeloma, trust the information here on this site and if you have any questions someone will pop along on the forum with help and advise. Please keep in touch….best wishes to your Dad ( and you ! )

Ali x

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