Been thinking about you @Maz. How are you all doing? X
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Hi, well we have had the conversation I was dreading, and now a pa alliative care referral has been put in place with the local hospice, who are coming to see Mum and I in Tuesday morning. I also want to visit the hospice so I know what it’s like. Mum doesn’t have many symptoms but the consultant told us that her diagnosis is " Lymphoplasmacytic Lymphoma with Myeloma plasma cell differentiation", so now I’m wondering does that mean she has two cancers? It’s all so confusing.A paramedic practitioner is coming to visit mum and I on Monday next week to alter her Respect form so it reflects her end of life wishes as currently it’s just a DNR .Consultant said the Lymphoma cancer can turn aggressive quite quickly, so basically told us to do things we want to do and not wait. He wouldn’t give a prognosis so I assume all the time mum is feeling ok we’ll carry on as normal. He’s not worried about doing more bloods unless she deteriorated, then she’s happy to have a transfusion which the hospice said they would do. Kindest function has got a bit worse though but again unless she gets symptoms then he won’t step in. We havea CNS nurse at last so that’s 
. I struggle to keep going some days, currently I’m sitting in McDonald’s writing this trying not to cry. My partner is slightly autistic and doesn’t understand emotions or why I get upset so I can’t let go in front of him and I won’t break in front of Mum as she needs me to be strong, I’m all she’s got. So just got to keep going. Work are great, I work as a GP receptionist, so it’s challenging but my boss is amazing and time off is never a problem.
Anyway I’d better get on as I need to get Mum’s shopping and drive to Eastbourne to spend the day with her. Thank you for reading, it makes a difference to know others are there for me x
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That’s must have been a really difficult conversation for you both and my heart goes out to you X
The diagnosis would confuse me so I have copied in @BloodCancerUK_Nurses which I’m sure can help.
It sounds like you have a lot of support from the medical team which is great and even better that work is so understanding. You have a tough journey ahead but we are here for you!
Have you managed to plan anything to do whilst your mum is well?
Sending lots of love X
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Dear @Maz
I am so sorry to hear that you and your Mum are going through this. As others have said you are doing a wonderful job supporting and advocating for her during this challenging team. Please do use you Clinical Nurse Specialist to ask questions and gain any further support you need.
This process has been so arduous for you so it is no wonder you feel scared and sad.
We would also be happy to support you if you feel that would be useful.
Kind regards
Gemma
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Hi@Maz,
What a terrible time you and your mother have had. It must be really difficult coming to terms with your mother’s decision not to have treatment. My mother in law had NHL. I am not aware of her ever having treatment except end of life care which she had at home. She spent a year or two in a nursing home but chose to die at home with the help and support of district nurses and marie curie nurses at night. She developped cachexia which probably killed her rather than the cancer. My father had multiple myeloma and was cared for at home by my mother, who was incredible. He went to a hospice for day care and chose to die there rather than at home. He was comfortable there and knew the staff from day care. My mother found that caring for husband their relationship became the closest of their whole life. The way ahead will be difficult but hopefully you will be able to make special memories with your mother and be able to look back fondly on them in later years. Dont forget to leave some time for yourself so you can recharge your batteries. May be other family members can help you by doing some household tasks etc…
Best wishes
Helen
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Oh @Maz it must have so difficult having the conversation you were dreading, you are doing brilliantly it must be so hard.
My husband is exactly the same, he cannot take emotions.
I bet MacDonald’s have seen some tears in their time, better out than in and personally I find it is like taking the top off my pressure cooker. I find the bath is a good place for me and my tears.
The medical services seem to be coming together.
As long as it is all what your mum wants.
I am so glad that you now have a CNS, they are there for you to contact if you need to.
It must be so confusing for you but perhaps now is a good time to do lovely things and spoil yourselves.
What a bonus that your work are great and perhaps if you feel it might help you they might be able to suggest someone you could talk to, I must say it has helped me in the past and also the Blood Cancer UK support line is there for you on 0808 2080 888.
I do admire what you are doing for your mum, she is very lucky to have you.
Please do look after yourself as well you are looking after your mum and keep posting when you have a chance xx
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Hi @Bitsy it must have been so hard having your parents die so soon after each other, I found I felt I was suddenly the eldest generation.
How are you doing now, look after yourself.?
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Oh @Bitsy what a terrible time you have had since Covid struck in 2020.
No wonder you could not really grieve naturally.
Then you had the shock of your diagnosis and treatment to contend with.
Perhaps it is no wonder you are feeling so anxious,
If you feel that it might help you to talk to someone your GP might be able to advise you of local services.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and your forum family are also here for you. Please let us know how you get on on Tuesday, fingers and toes crossed for you
Be ever so kind to yourself
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@Bitsy - that’s amazing! I bet you feel on top of the world 
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Yeahhhh that’s brilliant
I’m on dara maintenance with Zometa every 12 weeks
As you say it’s a nice feeling that the myeloma isn’t active 
Enjoy each day they are precious aren’t they
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Wonderful @Bitsy really good news, make sure you really celebrate the wins.
Look after yourself.
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That’s great news! Definitely take the good news and celebrate!
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Great news @Bitsy , go out and give yourself a treat.
Helen
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Enjoy with friends and family your relief
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So pleased to hear this, @Bitsy - what amazing news! X
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Thank you, we have the hospice involved now, palliative care referral has been done. Mum’s blood test this week shows platelets have dropped from 91 to 57 in 4 weeks 
, this horrible thing is on the move. The nurse at the hospital called me to let me know. Her white cells are v low too. I’ve been told we should look out for pin pricks as that’s a sign they gave got worse. She’s not due another bt until July. The consultant hasn’t signed her off yet tho . I’m no medical expert but I wondered what else I need to look out for? She has carers 4 times per day and I visit 3 times a week , so I need to let the care agency know what they should be looking out for? Ant advice much appreciated.
My boyfriend and I have a campervan and we are hoping to get away in a couple of weeks for a week in Cornwall. I think I probably should have a holiday now rather than later in the year x
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@Maz I think you really do need some good Cornish air, you have the care package in place for your mum.
Perhaps just ask her carers what they are watching for first and see what they say.
Look after yourselves and please keep posting
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Thank you for the update on what’s happening with your Mum. Once the palliative care nurses/team speak to you and Mum you’ll be advised on what possible symptoms to watch for. You and the carers can then feel reassured on who to call or contact, should you be worried about any new changes with Mum’s health. In the meantime, just to say that if her platelets are dropping she may have small bleeds, usually from her nose or gums. Not often, but sometimes a small amount may be seen after having bowels open. Just let the CNS know if this happens, as they may want to do a blood test sooner. Hopefully this won’t be something to worry about though. And great advise from @Erica - ask the carers what they would normally be looking out for, as they may already have experience of this.
Don’t forget the support line is open over the weekend and on Monday, if you need us. Take care, Heidi.
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Hi, so mum’s latest bloods were not great so her GP has ordered a urine sample and another BT test to check her kindey function. Mum has an AKI stage 3 anyway. She also caught her nail on her leg and caught the skin. It bled for quite a while until it healed but the photo they sent me shows extensive bruising around the wound area. Happened whilst I was away but carers checked it and I will look today when I see her.
Today I also collect her JIC meds organised by the Hospice. Apparently we have Morphine ampules and water for injection plus other meds. Am dreading collecting them as it makes it all feel so real…so am sat outside Boots waiting for the pharmacy to open with a coffee!
The plus side to all of this is mum still feels fine. She’s of the old British stuff upper lip brigade and probably wouldn’t tell anyone until it really is bad. Hopefully I can get her out in her wheelchair today, it’s warm and sunny and feels like summer may be finally on the way. Every day with her is a bonus, and I need to make the most of every Saturday with her. Thank you for reading 
xx
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Dear @Maz
Thank you for the post and I just wanted to let you know that I am here over the weekend from 10am to 1pm if you do need to talk. Hoping that you do get to enjoy some fresh air and sunshine with your Mum today.
Take good care
Gemma
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