AML no more chemo

@Erica I agree wholeheartedly, carers and family members do not get asked how they are. It seems an unspoken rule that we are expected to get on with it. It is not being selfish to take some time to think about what we are going through.

Loki doesn’t seem best pleased at your offer of lending him your thumbs! Apparently the affection I get doesn’t come for free. Cats eh?!


Oh your reply really made me laugh. Thank you. We have also told our cat (Eddie) he needs to start paying his way, but he’s having none of it. He’s been a real comfort to mum though.

I took all of your advice today and after my team meeting at work this morning said “I’m sorry I just don’t think I can do today” and logged off. I got under the duvet and watched Criminal Minds (it’s my trash tv of choice) for a few hours, then finally got up the energy to clean the bathroom and do some hoovering that I’d been wanting to do for ages. I’m very lucky in that I work for a charity and they’re very good at ensuring people look after themselves and understanding the situation.

One thing I have found weirdly comforting is the podcast Griefcast. It’s comedians talking about their experiences losing loved ones, a lot of the time parents. It’s heartwarming, funny, emotional and generally I just find it really comforting to hear other people talk about wrestling with all the different emotions and practicalities of death.

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@Ilona animals are so intuitive when it comes to our feelings. Loki slept on mum’s bed last night, he very rarely did that so, I am wondering if he realises now she has gone. He has been sleeping with my sister in her single bed a lot lately too, again he never does that. She has been waking up with chronic back pain as he is a huge cat and doesn’t leave her much space. She’s stopped moaning about how he only ever sleeps with me! She’s not been sleeping well so I know he will have been looking out for her.

I am glad you took a step back from the world yesterday and did something that soothed your mind and body. It is so nice to see you have an employer that is all for employee well being. I am sure that they will be fully supportive of you taking some time off to be with your parents.

I might give the podcast a listen. It’s been two weeks now since I lost mum and although I know she has passed it has felt like she hasn’t at the same time. I’ve been wondering why I have been feeling ok about it all. Then the funeral directors phoned late yesterday to say mum’s cremation is next Friday, that’s when it hit me. I’m doing ok though, I think it was what I needed, to let the grief in.

I’ll be thinking of you this afternoon when you go into the meeting. Please let us know how it goes, we are all here to listen and offer support. If you feel like you can’t talk about it yet, at least come through so we can exchange kitty stories to keep your mind of things.


Thank you for all your replies.
Mum is still in hospital and we’re waiting to see if we can get her home.
Her haematologist nurse says she realistically thinks mum has no more than 3 to 6 months to live.
Still no support for us yet at home as she doesnt qualify for any funding yet.
Some hospital drs saying she doesnt have long at all and even though in December the haematology consultant said 3 months they say her leukaemia is stable
So hard as I need my job but feel anxious about working when these could be the final months

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Oh @Jenster78 I cannot imagine what you have and are going through.
You must be absolutely exhausted emotionally, mentally, physically and practically.
And yes, you do need your job and the emotions that causes you are so natural.
Please do use the blood Cancer UK support line on 0808 2080 888 if you need to.
I will also copy you the link for the Macmillan Cancer support too.
Emotional, financial and physical help for people with cancer | Macmillan Cancer Support
Please do try and look after and do the odd thing for yourself too and keep posting

Hi @Jenster78.
I can only imagine how you are feeling. Your mind must be racing with so many thoughts and feelings and things to think about.
Is there anybody that can support you in getting the funding you need to bring her home?

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@Jenster78 I know exactly how you are feeling right now. The not knowing how long your mum has left will be hard and will pretty much dominate your thoughts. Like any other cancer, Acute myeloid leukaemia (AML) is unpredictable and how quick it will progress depends on so many things such as its subtype and mutations. I’ll teach you the lessons I learnt from my experience:

  1. Focus on what you can control, not what you can’t. This includes taking care of yourself, eating regular healthy meals, keeping hydrated and try to get as much sleep as you can. Take time for yourself like reading or a hobby to get a much needed break and calm your mind. I didn’t do any of these things and I found it hard to function.

  2. Arm yourself with information. I wish I had spoken to one of my mum’s haematologists to find out what was to come and what end of life care she would get. Loved ones tend to get forgotten about so, unless we ask we don’t get told. It will help you prepare and better understand what is going on.

  3. Talk to your employer. This is one thing I did manage to get right. They can go through with you what options are available. This can include using some of your holiday allowance, taking unpaid leave or, they may offer company sick pay. As mum’s haematologist was able to say she had a few weeks I was able to take the latter option. I had four weeks off at full pay. You could take some time off now to do things with your mum when she is more able and save some of your allowance for later on. As your mum has been given months your job will be a good distraction for you and structure.

  4. We are not superhero’s. It is impossible to be there for your mum and keep on top of day to day things. The washing and ironing will build up, the grass and weeds will grow to epic proportions and the house will look like a tip. But do you know what? It’s ok, simple as that.

Everyone deals with things differently, just do what is right for you. I’m here if you need a chat


Been thinking about you @Jenster78. How are things?

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