Hi @Hmc63 I am so glad that you had the courage to ask for and receive help.
This year has certainly been a shock and a challenging one for you and you have done brilliantly and you certainly realise who your angels are.
Your friend has been absolutely priceless.
Your mum has shown you the importance of of family, friends and social interaction.
Yes, you have your 3 angels but you also have us as well, look after yourself you have done so well.
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What a great poem, @Willow! You describe universal feelings, I think, however much the delivery of such terrible news has moved on (I did get the Blood Cancer UK booklet, thankfully.) And yes - if only we knew at the time of diagnoses that our minds can indeed adjust to accommodate our new reality, and that we can find extraordinary ways to cope. That there is hope.
Perhaps haematology/oncology waiting rooms need posters stating these truths. A big poster of your poem. A poster stating that all the negative emotions of today do indeed pass, and that we find courage and stoicism we never knew we possessed. Another showing future, happy us reassuring present day, terrified us - things like that. Thereâs very little on the walls of the waiting room I visit. I search them every time, looking for a distraction. Wouldnât it be fantastic if the walls were covered with hope? @BloodCancerUK?
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Thank you @Fullofbeans for your kind words. I am pleased that my poem resonated with you. What a brilliant idea of yours to have posters of some sort and messages of hope on the walls of the waiting areas. What a difference it would make. Warm wishes. Willow X
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Hi @Willow and @Fullofbeans, Iâll vote for the posting of @Willow poem in waiting rooms. I just am so touched every time I read it.
I always take my kindle with me to read as I am waiting for appointments, but then do not want to start reading it and then to loose my page when my name is called and I leap up and shove it in my bag.
The days of a table full of magazines are a thing of the past
Look after yourselves
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Hello @Willow
Iâve just read your amazing poem!! Itâs really brilliant and I agree with @Erica how useful it would be to have it posted up in waiting rooms. You encapsulate the reality of that raw pain and bewilderment at that moment of diagnosis at the same time as giving hope that sometimes things work out better than might be predicted at the time. I remember my husband searching the internet for hopeful stories and I read them over and over again to give myself hope. At the same time it is very comforting to read other people who understand and can express what itâs actually like to go from thinking youâre having a ânormalâ life one day to a complete sea-change in that hospital room or at the end of a phone. I remember my consultant looking at me and saying perceptively, âyouâve no idea why youâre here todayâ and he was right. I had no idea of the seriousness of what he was about to tell me.
On the day of my diagnosis I phoned my teacherâs union to ask for some advice and they said ânow youâre a disabled person you are covered by the Equality ActâŚâ So much for bedside manner there! I just felt I was falling very fast through a lift shaft and out of breath with the enormity of it all. This is the only way I can describe it.
I was diagnosed in 2012 and so 2022 is my tenth year (having been told to expect to live for 2-3 years). I put that out there in the hopes it will encourage someone reading this thread without ever negating how tough, tough, tough it is to get your head around it all at the beginning as @Willow has so brilliantly done in this inspirational poem.
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Thank you so much @Coastgirl for your kind words. As you say, it is so good to find others who understand. It can be a lonely place sometimes. I am glad you found my words helpful. Warm wishes. Willow X
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Your poem @Willow and @Erica 's comment has really stayed in my mind. A bit like âPoems on the Undergroundâ, wouldnât it be great if there could be âPoems in the Waiting Room?â
Do you write a lot of poetry?
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Hello @Coastgirl. Thank you for asking more about my poems. I only started writing poetry just over five years ago after hearing a short poem read out in a church service that I really connected with. The next day I wrote my first poem and I have now written several hundred of them! I find it a great way of expressing my emotions, so many of them are very personal. I am having regular telephone therapy sessions with an excellent therapist and she allows me to email her my poems so that we can discuss them together. As she said, maybe the therapy sessions are helping to produce more poems? I do have a strong faith and that comes out in my writing also. Do you write at all or are you creative in other ways? Warm wishes. Willow X
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Hi @Willow,
How wonderful that you have now written several hundred poems! Thatâs very inspiring that there might seem to be a link between therapy and expression through poetry; this makes a lot of sense. I used to write poetry as a child/teenager/young person but then I think with the busyness of bringing up children and working full time, I got out of the habit. A friend of mine of a similar age has just had her first collection of poems published so maybe its never too late to re-start.
Faith can be such a help with cancer, I do agree and have definitely experienced that for myself. A recent online course through the local diocese inspired me to take up the violin again. I have not attended church throughout the whole of the pandemic (as my first relapse occurred in Nov 2019 and then lots of immune-compromising treatment followed) and I miss singing along with a community of people whereas I donât enjoy singing by myself. Now some people might say that the sound of a novice violin player might be a whole lot worse than bad singing but I am really enjoying it. For me it is relaxing and enjoyable and my husband has good quality headphones! I was so fortunate to stumble upon a local teacher who is a trained music therapist and although I am having lessons rather than therapy, her teaching stye is enabling and uplifting. At the moment I am learning via Zoom and its amazing what can be achieved in this way.
I wonder what creative things other people do to help grapple with this complicated journey that we all find ourselves on in the cancer community? Or just to relax?
I hope you will continue to write many more poems!
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Been a while since I have been on the forum but the poem in the newsletter caught my attention as being so relevant. The conversation on it is brilliant and seems to really be helping people.
I got diagnosed with blood cancer end July 2020 started treatment 4th August 2020, stem cell transplant on 22-01-21 so I am almost a year on.
The poem shows and expresses how a lot of us fell, but the other side of it for me is itâs a really simple way to explain to friends, colleagues and loved ones how you are felling, as itâs so hard to explain. I find alot of people now see me looking and talking the same so feel itâs all done for me, no issues and itâs all fixed, how far from the truth can they be.
They donât see the difficult days, the constant trips to hospital for regular treatment, check ups and the daily medication. Donât get me wrong I am so much better that I was at the start and general feel great, but there is little tolerance from some people.
Itâs good to see all the comments how this is helping people as well, another key think to help is the mind. That good old saying Positive mental attitude. I have to say I never really believed in this, however after the shocking news and a few difficult days, I got my head around it, it is what it is so letâs just get on with it! Deal with the treatment days and then try to get on with the rest of my life as normal as possible. Donât get me wrong it was very hard at times but I do feel that if I had not have done this I would have been no where near where I am now.
Thanks for the poem
All stay positive keep pushing and I am sure you will all improve
Adam
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Thanks @Cannon your post is so true.
Yes, so many people just donât understand, mind you I think I put my smiley mask on too easily with others.
People think you get something wrong with you, your are treated and cured and everything goes back to normal, if only.
I certainly get my tough times but I also have so much to be grateful for.
Look after yourself and please keep reading and posting
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Can I ask the lovely people on this forum if they can be energetic one minute then so fatigued and achey the next in a matter of moments âŚI have some very good days now and my mental health has improved since I looked at what I have to be thankful for and support from my family and good friends who understand the frustration when I canât.do what I think I ought to be able to do
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Hello @Suzyq. Itâs good to hear from you. You have described exactly how I feel!! Thank you, because it helps me feel less alone and weird. The fatigue can come over me so suddenly without warning, and if possible I have to just lie down or rest a while until I have revived a bit. My haematologist told me it is a feature of Myelofibrosis that they donât fully understand because it is not always dependent on how good the blood counts may be. Actually I think it is a feature of a lot of different blood cancers but I can only speak for Myelofibrosis. Warm wishes. Willow X
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Hi willow it is so strange I have some wonderful days when I feel ânormalâ and then boom myelofibrosis tells me donât take it for granted but Iâm thankful for the good days and yes I need to rest if Iâm fatigued then like you I can carry on âŚBest wishes
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Thanks @Suzyq you describe how I feel so well.
I am like a roller coaster I feel better, then overdo it, and I deplete my batteries, and it takes longer to refill my batteries than to deplete them.
My fatigue can set in instantaneously and everything is just too much or it can take up to 48 hrs to set in. Therefore it can be difficult to work out cause and effect.
I donât deal with what personally stresses me well and I can overdo it emotionally, physically or practically.
I also never learn and get off my rollercoaster.
I have found that anyone who has not experienced fatigue just cannot understand what it is like.
Thanks @Suzyq and @Willow for making me think about this. Look after and pace yourselves.
Does this ring any bells with others?
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Iâm exactly the same and the fatigue can set in very quickly and without warning (literally minutes). The thing I find particularly challenging is the mental fatigue that comes too which makes it very difficult to focus on anything.
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I hardly ever stay awake past 10 pm and sometimes earlier. I seem to spend all of my spare time catching up on programmes I missed because I couldnât stay awake!
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@Suzyq I found that was also a challenge. I used to feel good so, lets go for it I thought, long walks, or do a good few hours in the garden or things like this then, spent 2/3 days getting over it. Now I do 15/20mins cycling every morning when I get up, I then do what ever else is planned in the day, steady and find that doing that I last so much longer and am more consistent, and the fatigue docent creep up all of a sudden and stop me. I am not saying I donât ever have that happen as I do and some times it takes a while to get over it. But I have found doing exercise every day help sustain me and keep me on a more balanced position. On the fatigue days you just have to sit it out and rest, I used to try to fight it and that makes it worse. I also massively find that eating drastically changes my fatigue levels, for example I always have my lunch 12 - 12;15. If I wait until 1pm for some reason I suffer the next day with higher fatigue levels. So something might be worth looking at. I try to have my 3 key meals at the same time and then I have a snack mid morning and afternoon, not much a biscuit, or a piece of fruit. Just make the day go smoother. We are all different and it took a while for me to work something out but this seems to work for me. Give it a try. Hope it helps, and remember keep smiling we have all achieved so much. Adam
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