Coping strategies

Hello,

My mum was diagnosed with secondary Acute myeloid leukaemia (AML) in the summer of 2023 and was put onto palliative care. We have had ups and downs but overall she is doing incredibly well.

We have reached the point now where her blood levels are no longer rising and she hasn’t been able to have chemo for over two months. On Monday she will be getting a bone marrow biopsy to determine prognosis and on Tuesday next steps will be discussed.

I’ve found reading others’ stories really helpful on this forum- everyone is so supportive and it’s reassuring to hear the responses even though they are not directly aimed at me. Due to this I’ve never felt the need to reach out… until now.

I am normally a positive person, however, I seem to be putting a lot of pressure on Tuesdays meeting with the consultant and I am seeing it as a negative turning point in terms of treatment options, decline in mums health and a step closer to the inevitable.

I think it’s come to the point where I feel like I can no longer cope with the normal day to day (work/ family/ kids/ chores etc) without some coping strategies in place to get me through what’s to come.

I’ve heard and read that reaching out is the first step so I think that’s what I’m doing…

Any tips to help me be strong for mum and get her through this whilst not falling apart behind closed doors would be really appreciated.

Thank you for reading this,
Charlotte

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Hi Charlotte. Lovely you felt able to post here, you are so very welcome. I’ve walked in your shoes with my dad (different cancer) and it’s a very lonely and hard path. I was really struck by something you said in your post about not falling apart behind closed doors - i think that’s literally where i did my private falling apart. I had moved back to my parents to support my dad and focused on his and my mum’s needs and know I advocated well for him. Indeed it probably kept him with us longer. Until that wasn’t the right thing anymore and then i supported them on that path till we lost him. The whole experience was involved, long, hard, harrowing and has changed my life but… it was a complete privilege to stand beside them.

Most of those days ended with me closing the bedroom door, calling my hubby (who also has a blood cancer and my reason for being on this forum, you couldn’t write it!) and talking it all through. And many tears. I found being back at my parents really hard and took at least 30mins a day to walk it all out. I put on headphones and blasted music and again, quite often walked and wept. I was probably better at self care in that situation than i am in our situation here at my home. I think those walks, that air and the small time out kept me as sane as i could be because, my goodness, some of those days dragged. And that’s the truth!

I found being very organised very important too. I had a notebook where i stored important info, kept notes from meetings, appointments and where i noted qts. I kept lists and ideas for ways to help them in this too. Indeed that book has only recently been destroyed as my mum asked for it to be. I often typed up key points from meetings and shared same with other immediate family. I think i tried, but didn’t succeed, to share much of the load.

I don’t think i have really captured what i was intending so please forgive me. I guess i just wanted to say it’s ok not to be ok, whether that’s in public or private, that it’s to be expected and that you’re undoubtedly being a wonderful support to your mum. I am in no doubt as to how much peace and release it gave my dad that i had his back. Thinking of you, hoping the next appointment is clear and answers qts, feels supportive and gives a clear direction. Look after yourself and best wishes to you and your mum

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Hello @CMcCa and welcome to this forum. I am so sorry to read what you are going through at this time but you have taken a courageous step in reaching out. I just wanted to share this simple poem written by a lady who rejoices in the name Pooky Knightsmith. It has helped me so much as I have tended to be someone who finds it hard to ask for help and even harder to express my emotions. The poem is called UPS AND DOWNS …

Life
Can feel
Hard to bear
And most unfair;
An uphill struggle
And nightmarish muddle
You’re fighting on your own.
But stop and look and you will see
That though you’re fully grown
All around are helping hands
Who’ll guide and care and
Understand as you find
Your way down. Let
Them help you
Let them try
And never
Be afraid
To cry
X

Warm wishes, Willow x

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Hi @CMcCa I am so glad that you have found our forum and I hope you find us supportive.
Thanks so much for your honest post and @judesadventures has given you a far better response than I ever could.
Yes, I believe you have taken a great first step by reaching out to us.
I believe family members usually go through their relatives health journey with them and their thoughts and feelings are just as strong, and often stronger, than their relatives.
They have their own lives to fit in and probably practicalities for their relatives as well.
It must be completely and utterly draining and exhausting.
I think the important thing is that you look after yourself as well as you are looking after your mum, otherwise you will not be any good to anyone, especially yourself.
Perhaps try to take it a day at a time and it is OK to fall apart behind closed doors.
Some hospitals have carers groups or your GP might know of local carers groups.
Thanks so much for joining us and the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting and really look after yourself and be very kind to yourself. xx

It is

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Oh @Willow that poem says it so beautifully, thank you so much

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Thank you all so much for the warm welcome, words of advice, honesty and powerful poem @judesadventures, @Willow and @Erica.

I wanted to let you know how much it has helped me to read (and re-read) your messages of support and comfort.

@judesadventures - what an amazing thing you did for your parents. It must be a great comfort to you knowing you advocated well for him and that you were able to stand beside them throughout. Can I ask you how you knew when it was the right time to move back into your parents and how you juggled work and your caring role?

I am so sorry to hear that your hubby has a blood cancer. It sounds like he was such a great support for you when you were going through things with your dad. You talk of being outside and I find that I always feel better after a dog walk. I hope that you are still managing to get some fresh air and your music fix?

I have found that, like you, I am making notes. I’m currently squeezing things in my diary but I like the idea of a separate notebook- thank you for sharing that.

@Willow you and Pooky Knightsmith are absolutely right. People are so kind and are so often willing to lend a helping hand…quite often the hardest part is asking for help. Thank you for reminding me that it is okay to feel sad and to cry… and for being one of the helping hands.

@Erica thank you- I think a bit of me worries that I won’t be able to put myself back together again if I let myself fall apart. Taking it one day at a time is a great suggestion and I will definitely look into a local support group.

Thank you again so much and I hope it’s okay if I post again after the meeting on Tuesday. This has been so helpful.

Please take care, thinking of you all and your hubby @judesadventures,

Charlotte

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@CMcCa im glad i made a little sense with my waffling! Its lovely to talk to you here as your caring nature really cones across.

You asked a couple of qts so I’ll do my best to answer those. The family and i went to Ireland (from our home in Scotland) for Christmas 21 and, long story short, i stayed on there until April in the end. I did so because my dad’s treatment was beimg affected by covid and quite frankly, someone had to take charge of what was acceptable delays and what was just inaction. There was mich to do and much to fight for. My dad’s condition worsened greatly and there were times my interventions saved him.

I was supported by my NHS employer and worked my 3 days fully from my parents while, literally, balancing work. I managed to get most appts etc on non working days and did much of the fire fighting on those days too. My work was still WFH for all of us so this facilitated this decision greatly at the time.

The rest of 22 was v hard to balance. I took regular trips over and was involved still in all conversations and decisions. Just from a distance and that was, truth be told, even harder to manage and took a huge toll on me and my family. From. Oct 22 on, my dad just got more ill. I was signed off work for a few weeks and went over to fire fight. Was home again and went back to the here/there scenario. Had Christmas 22 there and was amazed i got to come back to Scotland after and to work but that didn’t last. Things started to implode and it was clear we were heading into a new phase. I had no option, and was supported by work, to be signed off as knew i had to go there again and that WFH this time wasn’t an option on any level. I was there till end May and came home 2 weeks after my so lovely dad died. No help to go into those details but i was able to be fully focused on his needs and wishes and dont regret one min. It was my dad’s wish that i stayed by his side as his last days came and i cared for him night and day and my dad died surrounded by those who loved him, amd whom he loved, the most. Id like to say this would have been impossible without the care of district nurses and Marie Curie.

Way too much detail i know but just being honest and wanting you to know it took inordinate patience, much meticulous organisation, and actually sacrifice to do it. And that, honestly, i and my family paid a huge price. But we could pay it and fix it best we could after. Though it took time and effort and id hope to not ever have to do it again. The wife and mum guilt was immense with an added layer of already being a carer for my hubby.

I don’t actually know how i, we, did it given there were cancer ops and procedures to balance as well. They were dark days and i still talk to someone about them and probably now put it all in a locked space in my head.

One of the best things i was ever told was to focus on whats in front and not whats ahead. It took a little time to finesse that and really separate the 2 but it was so right. I still really try to do that. Im not as good at self care again now and recognise i need to work on it. I do think 22/23 exhausted all the physical and mental reserves i had and 24 brought a hysterectomy for me and an immediate menopause which I’m still enduring. But, im obviously made of strong stuff, know its ok i still pay for good decisions that mattered and that my parents, especially my dad is/was worth every bit of that cost. What a gift to be able to pay back just a little of their love to me.

Such an essay, i do apologise. Youll clearly see im still processing it all! I send you my best and keep in touch. We really can be in this a bit together!

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Hi @CMcCa if you were to fall apart, and perhaps you are already more resilient than you realise with incredible coping skills, we will be here to support you, plus the Blood Cancer UK support line on 0808 2080 888, and help heal you back together again.
But perhaps looking after yourself now helps you not fall apart.
Please do keep posting and ask for help and accept help

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@judesadventures
Firstly, I’m so sorry I haven’t been back in touch sooner and you haven’t gone into too much detail at all- thank you so very much for sharing this all with me.

I’m glad that you were able to be there for your dad, although it sounds very tough at times, you made it work and it’s clearly something that you are pleased you did and what, hopefully, helps to bring you a bit of peace.

I was pleased to hear that you talk to someone about everything that you went through/ are going through. You clearly are made of strong stuff and the fact that you recognise you are not as good at self-care now is (in my opinion) the first step.

On Sunday (before Mum’s appointment on Tuesday) Mum was taken into hospital with another infection. She was still able to go ahead with the bone marrow biopsy thankfully and on Tuesday we got the results. Unfortunately it wasn’t good news and it’s taken me all this time to get myself back on here.

Mum is still in hospital with the infection, which is getting worse, and her bone marrow is so busy making the cancer cells that it isn’t making the normal ones. There isn’t anything more that can be done to stop the cells being made or slow it down.

I went into Maggie’s to talk to someone but I just couldn’t do it. I’ve shut myself off from my feelings and, although I know I should allow myself to be sad and plan for the future, I have reverted back to my old ways of pretending it’s not happening and telling myself she will get better soon.

I really don’t want to let you down but I’m not sure how often I’m going to be able to come on here- if I write what is happening down then I’m admitting that it’s happening and I’m really struggling to do that.

Sorry again,
Charlotte

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Hi Charlotte, im thinking of you and holding you and your mum in my thoughts and good wishes. No expectations here as to message replies or updating us - just a warm welcome when it’s right for you to be here. Never an apology either - you do you and this awful situation the way that feels most manageable to you. We are here now, tomo, next week, month, year - it’s a whenever it’s right for you to pop on. Until then, know we’ve heard you and wish you well xx

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Oh @CMcCa you are definitely not letting anybody down and certainly no apologies needed.
You have made a very brave step coming on to our forum in the first place.
I cannot imagine how you are both feeling, devastating news.
We all cope in the best way we can in the circumstances, there is no right or wrong way.
You seem to have good personal insight as to your coping skills and in my book that is the first step, as was actually going to see where the Maggies Centre was.
We are here for you if you need us and I will be thinking about you and your mum.
Really look after yourselves, ask for and receive help and sending you both love xxx