This topic contains 36 replies, has 12 voices, and was last updated by 
eve 12 years, 3 months ago.
Hi it's only me once again.
We've had the news that not only is Mums Myeloma back with a vengeance, but the plasma cells are now circulating round in Mums blood out of the Bone marrow, they have said she has the very rare Plasma Cell Leukaemia. It is known to be quite Aggressive. This answers for the fever etc..
For now they are continuing with Mums treatment, ie the Revlamid/Dex for the Myeloma, but as she is too weak to have the treatment for the PCL, there will be a time when the Rev/Dex will have to be stopped and pallative care started.
Mum is not aware of any of this, obviously we are devastated, but we as a family, agreed it would not be in her interest to know the added problems, just yet, if at all. If she asks the question to the Dr, we know they have to answer, but for now, we have just told her we are upset that the Drs have said how poorly she is.
It seems that while her blood results are stable, although not good, she is jaundiced from her bilirubin count in her liver, they will monitor her daily. (the liver team have been to assess her but as her platelets are too low, the risks for a biopsy outweigh the procedure) she is having blood and platelets nearly daily…
Am numb, very numb..
Only me
X
That is very sad news for you and your family,I would say you have done the right thing in not telling your mum,but if she starts guessing i would tell her as,she might have things to say,that need to be said.
We tend to try to protect the person that is ill,but sometimes its good to talk about it,as you find out what they would like,I know when Slims time comes he would prefer to be at home.and he told me he does not want an expensive funeral,so these are his wishers.
I hope they can get your mums platelets up,as this will make her feel so much better,then they can see what is going on with the liver,
Try to be strong for your lovely mum.Eve
Thank you Eve for your lovely words…
At times like this, who knows what is right for those that are the carers, and for those who are ill.
My Dad doesn't want Mum to know the added problems, unless she asks, and for now, she hasn't asked. Maybe it's the fear of her giving up the fight and slipping away, if she knew, that is his worry.
The main thing is Mum is calm and resting knowing she is unwell, but not the full picture. maybe that time will come. She isn't daft and it would be a relief in my eyes if she knew, so we can all be honest with one another again. There seems to be a cloud hanging over us. the Drs have said if she asks, is there anything else wrong other than the myeloma, they will have to tell her, but for now, she doesn't know.
We are continuing to be at her bedside, with cheery faces, with our hearts breaking inside.
My head is in turmoil and my body is aching all over, knowing the possibility of what is coming.
I can't sleep, and feel sick constantly due to the worry.
I never expected to be in this situation, a week ago, they said the myeloma had returned and we battled on, positive and upbeat that Revlamid would again buy us time.
But now, it all feels so bleak..
Sorry to sound so down, but I am..
Lots of love to all..
Only me
Xxx
Please do not worry about feeling down,this is were you should come when you do,as we all understand and lots of us have been in situations that have been very difficult.
A year last Easter Slim was in ITU,we actually got married in ITU so that in its self explains how bad things were,he still tells everyone I married him when he was full of drugs and could not say no.;-)Min was the person who helped me then,she has since lost her husband.
So try to remain positive,I know that seems a bit silly,because all wild thoughts are going on in your head,but you do have to look after yourself,to be strong for your mum and dad.
Love Eve
Hello only me,
I am so sorry to hear your news. I can only imagine what you and your family are going through. My mum is my best friend, confidante and stabilising influence. My heart goes out to you and your family. I know these are only words and will do little to help but I hope they will help in some small way. I hope the medical teams can do their magic,but can understand how it must look for you. It can be so hard to do the smiley face thing when really there are times when you want to cry your eyes out.
All the best
Vicki
Hi Only Me
I am so sorry to hear your Mum has got more to fight than MM and trust me Girl its Ok to feel down at times like these.
That said I do wish and pray your Mum has longer with you all and is up for the fight, as always we never know what is around the corner.
Keep strong and tell your Dad i am sending prayers for your Mum.
Love and Hugs
Tom "Onwards and Upwards" xxx
Vicky Tom and Eve, your words of support mean so much, thank you..
Mum wasn't doing too well, with her breathing yesterday and last night they put her on face mask oxygen rather than the nasal cannula she has been having.
She sounded rattly and looked a bit frightened.
We stayed with her as long as we could, and then left knowing I wasn't going to get much sleep.
I rang around 11pm and she was settled, so I must have drifted off too. Although my nights sleep was non existent..
Today is another day and I have woke wanting to cry, once the realization kicks in, of what's happening.
This PCL is so rare, I can't find anything on it to read, but for once I don't feel the need too as it's so rare and the Drs have said it's very aggressive as a secondary.. It will only add more upset and negativity, to how I am feeling, I have read up so much on MM, I don't feel the need to know much more.
I do love my Mum very much and knowing this is looking bleak now, I want to be with her so much, so that she has someone with her as much as possible. My Dad is there every day between 1-3 and then he desperately tries to return to business as usual at home, to keep him busy. This is where me and my sister step in and take over with sitting with her.
I didn't realize this would be as exhausting as it is. I am going to try and go for a long walk this morning before I go to hospital as I am shattered, and feel that fresh air, might clear my head a bit.
I have been so positive all the way through and for some reason, that positive energy has gone..
Lots of love to you all
Only me xxxxxx
Oh dear,
I spent a lot of time thinking about you yesterday. It's really rubbish isn't it. It would be almost a relief if it was just! mM wouldn't it and who would have thought any of us would say that. Not sleeping does not help with the lack of energy that all the worry takes out of you doesn't it. I really hope your mum is feeling a bit better today, and that your dad can keep his chin up. I hope you enjoy the walk, fresh air is so much better than hospital air.
Best wishes
Vicki
Hey Only Me
Keep going Girl I know its hard and I feel harder for the Carer/watcher than us with MM, as while we are confined to bed we can sleep.
I hope the walk done you some good but please look after yourself also, you dont want to find yourself too Ill to visit, am sure its difficult to sleep but the power nap is also good for you half hour here and hour lata.
Love and Hugs
Tom "Onwards and Upwards" xxx
Dear Angie
This is the very hardest part of loving someone isn't it? As Tom has said, you who watch have to try to keep things together. I shall be thinking about you, hope your mum improves as the day wears on.
Love Helen
Hi Onlyme
As Tom said cat nap it does work,It is hard,and your Dad does not sound if he is coping well,The house can wait,i think you need to take your Dad on that walk with you,he is trying to be brave for all of you,you cannot help your mum much but you can help your Dad,come to terms with what is going on.
It is exhausting,but you will be surprised what your body can take,if you are having difficulty keeping your emotions in check in front of your Mum,and you do not want her to know her condition,I advise you to speak to your doctor who can prescribe some thing to get you through this bad time.
It will help you, Love Eve
Hi, to everyone, just to give you an update. I am currently sitting in Macmillan Day Unit.
Mum has deteriorated rapidly, and we are a day or so away from the end of her very brave journey.
From the last conversation, all of her treatment was stopped as the count in her blood was rising rapidly. This is the count of the plasma cells circulating in her blood.. It is literally one of the most distressing things to witness and I am totally shocked at the rapid progression of this awful disease.
Palliative care was started on Sunday and she us on a syringe driver of morphine. Mum is not in much pain, but the pain of knowing whats happening, was causing her distress. She now can't move and it is torture seeing her so weak and struggling to just sip a drink.
We are all being strong by her bedside and are taking things as they come hour by hour. She sleeps soundly for most of the time now.
Mum was aware what was happening and asked for the palliative care to start, so if there is a god, please make this last bit of her journey pain free and calm.
I am on the understanding this Plasma Cell Leukeamia is so rare there is only one new case a week within the UK. I am again forever grateful, that Mums was identified earlier and we can understand what's happening.
How ironic it's Myeloma awareness week, I for one have learnt so much over the last 18 months..
Once again thank you for your support and kind words, to ease our pain.
Lots of love
Only me xx
Hi Onlyme
Its harder on you and your family than on your mum,The driver will take away the pain,and your mum is in a state of ease,I do hope by the time your mum is ready to let go,you will be ready to let her go.
I have been wondering how things were with you,but felt that you had enough to cope with,with out answering any post,but do not think our thoughts are not with you,you are just making the foot prints for others who will tread the same route.
Love Eve
Hi Angie
Eve said it all, hold her hand, be there, tell her you love and give her permission to leave. How hard it must be.
Love Helen
Hi OnlyMe
I am sending Hugs and prayers at this difficult time your Mum and Family are going through, please stay strong and I pray your Mum stays calm and is pain free.
Love and Hugs to you all
Tom ((HUGS)) xxxx
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