Oh @MazI expect it must be so, so difficult and emotional for you at the moment.
I cannot imagine how hard it must be sitting outside the chemist waiting for the pharmacy to open.
I have just come in after a walk and it is really lovely outside and I can recommend the fresh air.
Look after yourselves and as @GemmaBloodCancerUK says the Blood Cancer UK support line is there for you and your forum family. xx
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Hi @Maz. It must be such a difficult time for you now things are suddenly feeling very real! We are all here for you.
Your mum sounds amazing and I’m glad she is still feeling well.
Enjoy your day with her today and take good care of yourself as well
Sending lots of love X
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Hi thank you. Bloods now showing decline in kidney filtration, EGFr gone from 51 to 38 and all other bloods out of range. More bloods ordered and mum’s GP sending results to consultant so he can decide if mum needs any kind of treatment for this, although I fear not as I don’t think there is a treatment and sh would refuse it anyway… She still feels fine which is great. X
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Oh @Maz it must be so, so difficult for you and I would feel so powerless.
I cannot imagine what your thoughts and feelings are.
Perhaps it is about concentrating on the fact that today your mum feels fine, which is great.
We are always here for you and the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind and spoil yourselves
Hi @Maz.
Thank you for taking the time to update us. Sounds like there is a lot going on. I’m just really pleased that your mum is still feeling ok. Hope you are taking good care of yourself to?!?
Please keep us updated when you feel able to. Sending you both lots of love X
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Hi, sorry I’ve not been on here, we have had to change Mum’s care agency as she had new carers who couldn’t open a tin, let alone make a cup of tea. Incredibly stressful dealing with it all by myself with no support from my partner at all. Mum has a new agency now who hopefully will be better. For the sale of both mine and her mental health I hope so as I feel I’m like a hamster in a wheel, the stress is never ending.
Mum has had quite a bit of bleeding under the skin, the hospice come once a fortnight to check her over and I send the photos of the bleeding to them. So far no major bleeds but lots of little ones, especially on her legs, calves and hands. I guess this is how it goes?
I asked my GP i I could be tested to see if I have this mgus paraprotein, he said no as it would need to be requested by mum’s consultant and go to a special genetic testing place? I felt like he was fobbing me off to be honest. I feel ok apart from constantly exhausted but that’s the situation I’m in. Just wondered if anyone else has been tested due to a family member having this?
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Oh Max I am so sorry to hear that they have been unable to determine the cause of your mums illness. Have you considered going to Pals and asking for an alternative consultation for your Mum it may be a fresh pair of eyes might help.
What does your Mum want - it’s very difficult when you are advocating on behalf of someone else. I know I have two polar opposites an aunt who is 87 today and is fitter than me and father in law who is 86 whose health is not good at all. So in each case I would be asking for two very different things.My aunt would need to get to the bottom of what was wrong with her but my father in law would just say as long as he was made comfortable he didn’t much care what was wrong.
Do hope you can get to the bottom of this and get something sorted for your Mum. Make sure you look after yourself too.
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Hi @Maz sorry to hear that things are so tough and stressful at the moment for you.
Having to change a care agency is so much hassle when you could do without it.
@Jules has given you a great response.
As for getting tested for this mgus paraprotein, it probably not a test that is carried out routinely by the NHS and only under special circumstances.
You must be constantly exhausted, unfortunately carers often are the ones that take the strain.
Sometimes partners do not act as we would like them to, it’s tough.
The main thing is that you try and take as good care of yourself as you do your mum.
You are doing brilliantly in such difficult circumstances.
Don’t forget the Blood Cancer UK support line is there for you on 0808 2080 888
Be ever so kind to yourselves. xxxxx
Hi, just a little update. I’ve been signed off sixk with stress and exhaustion. The new care company we got are horrendous. Mum.ia constantly having to tell them.what to do. They don’t talk to her. They tired to put a trifle in the microwave, the left her alone and unattended and left the call early, leaving her alone in the hallway, barely able to get back to bed by herself. I’ve raised many concerns, only to be told " oh don’t worry it won’t happen again" but it does.
She constantly bruising now,some are quite big, they are meant to be monitored by the carers incase she gets them on her stomach or back which I’m told may well indicate internal bleeding, yet no one bothers. She had bloods done last week, the results of which we get next Friday along with a telephone call with her consultant. I’ve made a list of questions to ask. I’m concerned as the bruising is increasing does that mean the cancers progressing? She doesn’t seem to be eating as much and gets fuller quicker. She doesn’t appear to have lost weight tho but as she’s in bed all day she’s not burning any calories off anyway. She hates me fussing, hates me checking her over but I have to for my own piece of mind.
I’m just struggling with all of it, the last 18mths sinc her health declined, and the last 5mths since her cancer diagnosis have been so tough. I often wonder how I’m still smiling, but I have no choice but to carry on. She’s only got me to deal with everything, there no other family.
I’m absolutely dreading the results next week.
Anyway I’d better get a move on and drive over to see her, cook, clean, and somehow keep cheerful. Take care everyone x
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Hi @Maz. I’m not surprised you have been signed off sick. There is I’m only so much our bodies can take and this may be why you need right now.
Off course you still have your mum to look after, but please try and use some of the time to rest up and look after yourself - it’s so important.
The care doesn’t sound great - are there anymore you could try or other avenues of support.?
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Oh @Maz, if it does not sound a weird thing to say I am so glad that you have been signed off sick.
Sorry that the carers have caused you so much hassle.
I am very impressed that you have got all your questions written down for next Friday’s telephone appointment, make sure you get them all covered.
As for your smiley face, I also have a default smiley face and I have had it since childhood. I also know that feeling of being stuck in a treadmill just going through the motions.
Please let us know how you get on on Friday and be very kind to yourselves, being a carer is really so exhausting mentally, physically and practically.
We are here for you and also the Blood Cancer UK support line on 0808 2080 888
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How are you doing @Maz?
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Hi Nicola, well two weeks off is kind of working, feel a little better now. Just got to get Friday out of the way, Mum’s telephone call with blood results. Thank you for asking xx
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Hi @Maz glad that you are feeling just a little better, it’s a start.
Please do let us know how your mum’s telephone call goes.
Please do try and get all her and your questions answered.
Take lots of care of yourselves.
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I’m glad that the time off is helping a little. Obviously Friday will be playing on your mind. Please let us know how you get on x
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My uncle & my mother have both been diagnosed with blood cancer - I’m not sure what kind yet for either of them.
I’m incredibly overwhelmed & just want to be there for them but I can’t stop crying thinking about them being sick or scared themselves. I guess I’m just looking for some other people who are going through something similar.
Hope you are all ok,
A
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A warm welcome to this community @macmac84, I’m so sorry you and your family are going through this. I hope you find this a really supportive space to share how you’re feeling and what’s going on for you. Please do give us a call on 0808 2080 888 if you want to talk anything through. In case it’s useful, we have a section of our website for people who have a loved one with a blood cancer diagnosis - My friend or family member has blood cancer | Blood Cancer UK.
Take care, Alice
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Oh @macmac84 I am so glad that you have found us, a great big welcome, you and they must be in complete shock…
I think personally crying is a really healthy response to shock, I kept it all inside which I believe is far worse for health problems.
@Alice_BloodCancerUK has given you great information.
Personally I would say just all give yourself time and try and take it a stage at a time.
If you are local just ask them what you can do or offer to help, it might be giving a lift, doing the shopping, cleaning their property, having a chat and perhaps giving them our Blood Cancer UK forum details.
There are people on here who are in your position and I hope they will be able to share with you.
Look after yourselves, be kind to yourself and please keep posting.
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Hi @macmac84 and welcome to the forum.
I can only imagine how you are all feeling. That’s so much to get your head around and to process. A rollercoaster of emotions.
@Erica and @Alice_BloodCancerUK have given great advice.
Please keep posting . We are all here for you 
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Yesterday I spoke with my second mumma who has been diagnosed with myeloma (we are not blood related) by very very close
She has shown me so much kindness through my journey and now I can help her through hers
You couldn’t make it up
We will fight this together 
as myeloma twinnies
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