A poem of my journey/my first post!

Hi everyone, I have come on to the forum a few times to read the helpful and reassuring posts that are here but have not quite felt ok to post. I kind of deal with things on my own and talk about those things afterwards rather than during. But I did jot down a few words here and there throughout our journey which developed into a poem. I keep changing it and should really stop now. so, I thought I would post it here. I hope its ok to post. It makes me feel sad to read it back but i think it will help to move on a little if i share it.

Please excuse any mistakes! And my different fonts and italics haven’t come through. But here you go. I’m not sure what to call it…other than:

But
From the moment the poison hits: They ask ‘is he ok?’

From the moment the poison hits: I ask ‘are we going to be ok?’

From the moment the poison hits: I wonder, ‘how will we get through today?’

You were so brave to walk back in there

Willingly hand yourself over for another course

A stronger one they said, freshly prepared.

And we had to wait patiently

For a more horrendous time than before.

From the moment the poison cursed through your veins

From that moment you were in so much pain

We could visibly see the path it took…

Your veins rose high, your eyes went dry and your skin burned purple, your breathing became restricted, your organs were saturated.

Every cell was destroyed

Every day was a battle

Every day took its toll

And not just on you.

So many Nurses

So many Doctors

So many people caring

So many people scared for you.

You nearly died

when a blood clot arrived.

Infections from the lines and an allergic reaction to the meds that they gave to help.

Your organs were spiking

Your body was battered

Your soul became weak – it had been so strong and determined

But this treatment was brutal indeed.

They asked me how you were today?

But, they ask when I am with our children

And when I look into their eyes

Although I am screaming inside, that you nearly died.

I have to say out loud

That today, you are ok!

And we are going to be ok!

And when they ask if your hair has fallen out

I think about your eyes

And your hearing

Your teeth

And your body shaking

Your confusion

And the vomiting

And yes, your hair has fallen out

Your nails have stopped growing

And you are being burned from the inside out.

Some side-effects still remain

Is it fatigue or chemo brain?

I walk on eggshells as I navigate around you

Trying to build you up and reconnect you…

Helping you to make sense of what we have been through

But you resist and I carry on…

On my own,

I have never felt so alone.

And then when they see you and they say you look so good today

They look so happy and are so content

Your hair is black and your skin is no longer grey

But I cannot smile, I cannot agree,

It’s such a conflict for me

Your body is still fighting to survive

Your blood is at war

There is so much more…

And it is all going on inside!

And when I try to explain

again and again

They ask, ‘What is GvHD?’

And I get really disappointed

and withdrawn

Because I’ve told them before

HOW CAN THEY FORGET???

How can they not know!

So maybe it is best

to just agree and say yes…

Yes, he’s ok today

Yes, his hair has grown back

Yes, yes, yes.

Yes you survived

AND

Yes you are alive!

But

There is so much more going on inside!

And you are still fighting.

And we are still surviving.

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@Lucy, that poem really spoke to me and how difficult the part of a partner/carer is. You speak of staying strong and saying the patient is ok because children are near. You speak of the pain of seeing the person you love struggling with mental health despite having survived. I always felt that while I was having treatment my husband and children suffered more, and you also mention the nurses and doctors who feel so personally involved and hurt when things are going badly and cheer as things improve.
Have the family had any counselling through Maggie’s centres or Macmillan? My emotional problems began after my treatment, and my GP surgery were fantastic.
I hope you find sections on the forum to help, even if you are not ready to share yet. It takes time for you all to heal, and to find a new normal. It is almost like a grieving process…
The support line is also available if you need to talk to someone unconnected with your family.
Wishing you better times, and a continuing recovery for your loved one.

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Oh, Wow, @Lucy what a debut post, I am left speechless, you describe you and your husbands experiences so vividly and I can visualise it as I read it. As @Pisces56 says the family member also experiences the times, you cannot take the pain away from another person and perhaps you feel completely helpless and lonely, oh, so lonely. You are the bridge to the outside world, being strong, but then you keep so much inside from others, protecting children and trying to explain to others that just don’t ever understand the new vocabulary you are using. We are all here from you and perhaps we do understand and can be a place you can be really honest what it is like to be you. A great big welcome @Lucy, if you feel the need you can contact the wonderful Blood cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk and we would really like to hear from you again here. Take care of yourself as well, have an extra bubbly bath or your favourite treat.

Thank you SO much, LucyHunt for sharing your amazing poem! It is exceptionally hard as the loved one of someone who is the patient. Thank you for your openness and for being real. I have myelofibrosis (a rare blood cancer) and have found poetry a good way of expressing how I am feeling. My Christian Faith is also a source of comfort and strength. Here is a poem expressing how I felt when I was diagnosed …

SHATTERED
When we get shattered
What does this mean?
Our life is in pieces
The shock is extreme.
Fragments remain
Of how our life was
How can this happen?
So much we have lost.
As we look at the splinters
Lying on the ground
We cannot imagine
How peace will be found.
But out of the pieces
Something new can be made.
God our restorer
Can rescue and save.
He takes what is broken
As only He can
And creates something beautiful
With His loving hands.
Just as broken glass
Let’s the light shine through
The same can be said
For me and for you.
You can become
A precious work of art.
Even more beautiful
Than you were at the start.

Hope this is of encouragement to others.
Thank you. Willow

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Willow, more inspiring words of comfort and really encompassed how I felt when I was first diagnosed, Thank you so much. How are you doing during isolation?

Welcome to the online community @Lucy, such an amazing poem. Thank you for being so open and sharing, gives such an insight into what you went through and your feelings and thoughts on your journey. I’m so glad you felt comfortable to share it and look forward to hearing more from you in the forum. It’s so understandable to feel sad reading it back as its your feels and reminder laid out in front of you in black and white. I do hope if makes you feel better and able to move on from your experience. If you need to talk to someone, the support team are only a call away.

Wish you all the best,
Bav

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@Willow, lovely poem, I’m glad people are getting inspired by @Lucy’s poem to share and express what their journey was for them. Such amazing talents in this community!

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Hi Erica. Thank you for asking how I am doing? I am quite good at keeping myself occupied and enjoy creative activities and writing poetry. I live on my own but my main concern is my mother who has recently been diagnosed with dementia. My sister has had to move in with my mother as her Carer and any outside support they had has been stopped for now. I feel helpless as all I can do is give support from a distance and it is hard not to be able to see them. Fortunately I enjoy my own company and like to live a quiet life as fatigue is a big issue. Therefore some aspects of shielding are suiting me quite well. Hope everyone is managing as best they can. Take care.

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@Willow @Lucy I echo everyone else! what powerful and honest poems you have both written, we can’t thank you enough for sharing these. Such moving words, have you both written poetry before?

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Thank you for your message and for reading my post.
I personally have had counselling and the schools arranged for the children to have pastoral care but they were so resilient they didn’t need it for long. My husband doesn’t want to talk to anyone about it, at all. Maybe he does still need time to heal and i know we shouldn’t rush anyone or make anyone talk before they are ready.

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Hi Erica, thank you for reading my post and commenting on it. I have to say Erica I have read through a lot of your posts and you have been very reassuring and positive to read at a time that it was very difficult for me to reach out for help. so this forum really is a great place and i feel happy to have finally made a contribution.

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Willow that is such a beautiful poem, out of heartache and sorrow and such a shattering time - I do hope that we become more beautiful. Thank you for sharing your poem too.

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Thank you Bav. I have thought about calling before and might work my way up to that especially at such a difficult time when we are so up and down. I am glad I have finally stopped tinkering with it, i kept coming back to it and changing certain words, taking some out and then adding more and so i felt I needed to stop. Stop changing it and perhaps stop looking back. I do feel better thank you

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Hello Su, thank you for your comment. I’ve written a couple throughout my lifetime but not many and not for a very long time! I usually write in a journal when i am down or going through a difficult time, or studying and its part of the course but i just didn’t want to put anything into words at the time. The poem came about in bits, here and there, throughout different periods and i don’t think it is structurally correct. But i needed to stop tinkering and it sounds as though it is ok.
Take care
Lucy

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Hi Willow and Lucy

Thank you for sharing your poems with us. What an incredibly powerful way you have both communicated what you have been through. Not only have you so clearly articulated factual issues related to your journeys but also the emotional challenges comes through so clearly.

All the best,

Peter

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Thank you for your beautiful poem. Like you, my faith has played a strong part in my recovery and my day to day life. When I was having treatment for Hodgkins (13years since diagnosis & 11years since I finished treatment) someone from my church used to come each week. I had been the Church organist for a few years (really a pianist so I didn’t do the feet). Our priest sends a bulletin and prayers by email each week since lockdown.
From watching Bargain Hunt I learnt that there is a religion or culture (Buddhist or Thai) that mends broken porcelain with gold. I thought that was a lovely idea. Keep writing xx

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Really glad you decided to post this @Lucy and I’m so glad you feel better for it. What an incredibly moving and insightful poem. As you know, we on this forum are all here for you, and the support line team is too if you ever do feel like might help to talk things through with us, now or at any point in the future. Really glad you’ve joined the forum Lucy.

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I wonder if anyone else has written a poem or piece of writing or has one that they feel they relate particular strongly to? Please feel free to share it too if you feel comfortable :slight_smile:

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Thank you Pisces56 for your kind comments and for sharing how your faith has helped you. Yes, there is a Japanese art called Kintsugi where broken objects are repaired with a golden glue. This makes a feature of the brokenness rather than concealing it, like we tend to do! The image of Kintsugi has become very meaningful to me in recent years and I have connected with a Christian mental and emotional health charity called Kintsugi Hope. Worth checking out. The founder Patrick Regan OBE has written a number of books that I have found very helpful. Best wishes. Willow

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Thank you for the information about Kintsugi. My memory is not so great at the moment, and I couldn’t remember the correct details

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