For some strange reason I felt compelled to log in.. I have just got in from work..
So so sad.. Thoughts with all of Dai s family and loved ones… He was so kind and supportive to all he engaged with.
And also thoughts with any family going through the Myeloma roller coaster of emotions.
May we all stay strong and think fondly of Dais words of wisdom and knowledge.
Lots of love and hugs to you all
Angie (only me !)
Xxxx
Hi Tanya, I don't think it ever leaves us, the pain that is deep down there, from losing a loved one…
Your message was lovely and it's strange how some days that feeling of loss hits us more when it's a poignant day or birthday or anniversary…
Stay strong and like you I have children that keep me busy and have helped me through..
At times I feel guilty for letting them see me upset, but then I tell myself that they need to understand that sometimes emotions take over… And that I can be ok and laughing after… I lost my Mum year ago and I still think of her everyday and talk to her , as her picture is on my fridge!
Look after yourself and keep in touch..
Angie x
Sorry you have slim back in hospital..
Thoughts with you
Hope things are improving..
Remember to look after yourself too !
Xxxxx
Scott, firstly sorry you have joined this group…. I just want to wish you well.. Stay positive and upbeat.. This forum is a lovely supportive group of people who will be there to offer words of encouragement and advice wherever possible..
I was a carer to my beautiful Mum, who had a very rare complication of Myeloma… I gained the support when the going got tough and the words of wisdom and encouragement helped me through it all…. I will never forget how words helped me through the good and the bad… Sadly my Mum isn't here anymore, but it doesn't stop me being touched by everyone going through this awful disease and united we must stand together, to help each other..
Don't be afraid to ask anything or voice any of your feelings as you will probably find others in same boat as yourself…
Good luck and keep us posted of your journey…
Angie x
Annette I am so sorry for your loss.. I lost my lovely mum last July… Bolt out of the blue…. She had the all clear and all was well and then the demon was back… It was a ten day slow journey to be on.. I didn't cope very well after and was in a bit of state… I had to have counselling and couldn't stop crying… So many questions so many tears… The world stood still and I felt every emotion going…. Anger and sadness and ifs and only s and no concentration at all…. Couldn't focus…
What I want to say is that…. Don't be afraid to ask for someone ' neutral' to talk too, it took me about a month for the intense fog of grief to begin to lift it still was awful but I found a way to cope and a way to function and a way to start to look forward..
Here's a few rules…
Don't be hard on yourself
Don't be frightened of tears
Be with family or friends that will be there for you..l I had a friend who came to stop over on couple of nights…
Rest and try to eat…
Do what makes you feel calm look at pics if you can or put them somewhere safe to look at later.. They aren't going anywhere..
What would make you feel closer to your Dad..I took up gardening and feel I can hear mum talking to me!! As well as chuckling that I am making a 'pigs ear' out of it!! My hanging baskets are starting to flourish and I smile and think how proud she would have been …
Biggest hug and go gently and softly….
Xx
I tell myself that I although my journey wasn't pleasant I had valuable 'time' with Mum .. Time that will always be precious…..
And for that I am thankful…
Thank you to you for your kind replies…
I hope one day I will be able to help someone else, as so often, you all helped me.
I so often think of the myeloma bubble and wonder how you lovely people are getting on. There are so many dedicated people on here who are knowledgeable and kind and give their time to others… I hope one day to be able to offer the same.
I am not afraid to admit I didn't cope very well at all for the first few months afterwards.. But a year on and the pain doesn't ease but you learn how to deal with it. I talk to my Mum and I bring her up in conversations, and I know how to deal with a heavy heart…. And I can smile without feeling guilty.
All I have to do now is get through the next week without thinking back to this time last year because it was torture…
Big hug to everyone and anyone using this site…
Love
Angie xxx
(My other post has been found it disappeared to the back page….. For those of you who commented on that…….)
My first post and replies disappeared? Try again…. X
Hi Annette, I can identify with what you are asking, but please may I offer you some words of support…
If your Dad is 'calm' too and happy, why worry about what lies ahead ? For now, you can sit and talk through things that may bring a smile to both of you… His childhood, hobbies, what he wished he would have done in the garden, anything that you know would give you those lovely memories…..
It is the hardest time worrying, as I did when my Mum was told her Myeloma was back with the added kick of her getting a very very rare complication of plasma cell leukaemia, they said it would be rapid and aggressive and boy did it knock us all off our feet… They said a few days if that… This was after she had been given the all clear…. After her SCT… After she had started to rebuild… I spent ten days asking the same question as you are.
Having said that, I know you will still worry, but I am getting great comfort from knowing what Mum wanted me to do, when she wasn't here, and I am almost living each day now doing things that I know Mum would have wanted me to do, it gives me comfort..
Time with a loved one is so precious relax, and keep talking….
Lots of love and prayers with you xxx Angie x
Hello to you all, after a few weeks, I am starting to feel a lot stronger, it's been awful.
Mums funeral was on the 16th July and we gave her the send off she had planned.
We all miss her dreadfully and are finding our ways through the pain. She was so brave and courageous and to witness something like that, took it's toll on me and I've had to have some counseling to ease the pain. However I am pleased to say I am beginning to smile again and feel a bit more like me!!
Keep strong everyone and I can't thank you enough for all of your lovely words and messages throughout.
Love
Only me
Xxxxxxx
Hi just to let you know Mum sadly passed away at 9.30pm last night.
I will post again in a few days, but for now, feel numb.
Thank you for all your support, without this wonderful website, I would have been lost.
Lots of love
Only me
Xx
Hi ….. I didn't realize what a long process this is.
We are still with Mum, as she is sleeping, she is no longer responsive and is still lying peacefully, they are managing her pain as and when she seems to need it.
The Macmillan unit is a wonderful place and 7 days after Mum arriving here, the care is amazing for Mum and for us..
I will post again but for now I feel your thoughts and prayers and once again thank you
Xx
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
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
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
Thank you for all of your kind words, we are all in this together, the carers, the ones who have been diagnosed, and the medical experts, but with a united front, we can all be there for each other, to offer words of encouragement, and for that I am thankful.
We are upbeat today after the initial knock, and upbeat, we will stay..
Confident and positive that we are on another journey, yet again.
Will be back on here no doubt very soon.
Lots of love and may I send positive happy thoughts back to you all.
Only me
Xxxxxxx
