[gina45Participant]

I haven't been on for a little while because there has been so much going on at the moment. The good news is i am getting married in november.We havent got lots of money saved and it will be pretty low key but i dont care as i want my mum and ians dad there and as you know we never know what time we have left. Ians dad had a second stroke at the beginning of the year and he is struggling with his understanding(ian my partners mum is his dads full time carer).
My gran who is 91 has just been diagnosed with parkinsons. Then there is my mum who is 71 and as you know has mm. I cant remember the last time i wrote about her having the vecade but we have been put off and put off. The original consultant who has now left put my mum onto the heotology nurse instead of him, the nurse was shocked and said mum should have been seen by the consultant and be on treatment again as the mm is now active again(it was 42 about a month ago). My mum is very ill and down at the moment she cant even walk into the kitchen without being out of breath(her words she feels like she has done a marathon). they said when she was in hospital she would have treatment in 2 weeks its now a month.anyway our doctor spoke to them and did her bloods, they are low.
mum has now got a phone call to say she starts the treatment on monday i just hope mum is ok.she has lost lots of weight and she just looks so ill we are really worried.
again im on here having a moan sorry, i just know you lovely people understand xx

[BADGERParticipant]

gina
I can understand your anger this is terrible your mum is entitle to ask for a change of consultant and hospital if this is possible for you I would do it, thinking of you
Regards Jo

[gina45Participant]

I know i have been thinking to do that. I think because my sister complained to PALS today they must have said something, also my mums gp has spoken to them.Hopefully when she starts treatment on monday she will start to feel better hopefully. Thank you for your reply xx

[brochoParticipant]

Dear Gina congratulations for your wedding, and you dont need lots of money to make it the best day of your lives — just each other and your families beside you !! I am appalled that those wretched doctors have allowed your lovely , lively mum to become so poorly when they shou;d have started treament ages ago Its no wonder you are angry , I agree with Jo a change of consultant at the very least As Dr Yong is in charge of the haemotology department perhaps speaking to her would get things moving . I have always found her very approachable and when there has been a problem she goes out of her way to put things right( I take it mum is still at UCH?) Hopefully there wont be any more delays and mum will start to pick up when her treatment kicks in . Please let us know how she gets on next week if you can Hang in there Gina with your support things will get better for not only your mum but you as well Love to you both Bridgetx

[shirleyParticipant]

Hi Gina,hope you ok,and hey you come on here and rant and rave as much as you want,i've got mm,so i cam sympathise with you and your mum in the pain she has,must be a very worring time for you all,like Jo & Bridget suggested change your consaultant if you are not happy with the way your mum is being treated,your entitled to,. In order for her to be well again she needs to be comfortable and at ease with whoever is treating her,wish you alot of luck there,. And congratulations to you & Ian on your forthcoming marriage,i've been married 1yr 3 weeks tomorrow,can't believe how time flies,anyway in the meantime you come back on here and rant & rave all you want,you and your mum take care,best wishes Shirls x x:)

[DaiCroParticipant]

Hi Gina,

How is your Mum getting on? Has she started her treatment? If so I have just completed my 4th Cycle – now on the 10 day 'rest' period… that is rest from treatment ie. injections but the treatment continues to work in your body so it is normally about 4 or 5 days into the 'rest' period before the side-effects of the treatment start winding down and your body starts rebuilding the blood levels (red and white cells), platelets, neutrophils (immune system) etc. helping to make your Mum ready for the next Cycle.

If I can help with any questions about processes and procedures I will… all medical q's need putting to your new consultant but don't forget the phone line on this site… Ellen and her team can give you much better advice than I on getting you properly connected with your hospital etc.

You really do have so much on your plate… a real mixture of people and events… you will need as much help as you can get… so don't feel embarrassed to delegate to your family… its not all yours to sort out on your own.

Good luck and keep being angry until you feel you are on the right lines with the right levels of guidance and support. 🙂

Dai.

[gina45Participant]

Thank you so much for your replies. Mum started her first treatment today, she was given an anti sickness drug which more or less worked straight away. She was then given fluids before the velcade. Mum was also given tablets anti inflammitories, something for acid reflux,. She was also given an injection in the tummy. The nurse who looked after her (sam) was a lovely man who made mum feel at ease and made her laugh. We were there for 3 hours but when we went home mum was very tired but glad that she wasnt feeling sick. The nurse also gave her some drinks with vitamins in them. I spoke to her before and she had managed to eat some proper food and was so relieved about that as she hasnt been able to eat anything and keep it down.
So we feel a little better today. We go back thursday for her next lot.
There is 6 of us one of my brothers lives with mum and helps at home and me and my sister are really her carers who do all the hospital, shop runs etc.We are glad that we made a fuss and are relieved treatment has started.
again thank you so much for your support and advice it is always much appreciated
Gina xx

[CarolBradley1Participant]

Hi, only just read about your situation and was horrified. So glad you seem to be getting the right attention now but sorry that you have all been through so much just to get to this point.
Congratulations on your wedding – who needs money if your together?
My very best wishes to you all and prayers for your Mum that her strengh improves a bit to help with the "fight".
Carol xxx

[brochoParticipant]

Hi Gina glad to hear your mum finally got started on her treatment you must be so relieved! Hopefully she will gradually get her appetite back and be able to tolerate food ok Gina your mum must be very proud of all of you and I am sure it must be a huge relief for her knowing you are fighting her corner!! lots of love to you both Bridget x

[gina45Participant]

Thank you all again for your support. Much happier today. Mum still gets breathless and is tired but she is actually eating proper food today,so we are so relieved.Here is hoping that this treatment will be successful and bring them paraprotiens dow.
Thank you all again
Gina xx

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