Hi @ChrisCKW, I am on cloud 9 because delivery arrived safely and put away!!!
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Me too now 
. And the enormous relief that comes from knowing i donāt have a looming chemo appointment at 2:30!
Happy Saturday x
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Oh @ChrisCKW that sounds really gruelling. I do hope things get better for you. And like others have said, you have no need to apologise for feeling low. Weāve all faced lots of health challenges and complicated treatment paths and it can be very scary and lonely so take every opportunity you get to unburden yourself.
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Hi @Blackhat, have you seen the āFriday Forum Jukebox Clubā, as soon as I saw it I thought of you as I would be interested to see your thoughts.
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Canāt say that I have, where was it on?
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Hi @Blackhat the Friday Jukebox is on this forum. The Friday Forum Jukebox Club!
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Hi Chris - and I hope that you are feeling a bit better emotionally, if not physically. Someone mentioned the Hospices in the responses, and Iād like to add that my GP suggested that I go along to our local one and she referred me. Although I was initally surprised at that suggestion, I thought that the more help I could get the better.
My Hospice have been wonderful! Until my referral Iād thought, like everyone else I guess, that Hospices were places you go to die but that cannot be further from thr truth. Before COVID I was going along to an Art group, a discussion group, and have availed myself of their expert advice on pain control. Other things they do include Pilates, Ukulele, etc etc. Since Covid weāve gone online and we now have an online meeting every week. Fantastic people 
Iāve been in my own personal lockdown for 2 years now, with chemo and SCT and itās not been easy - but I have found it easier to bear once Iād come to terms with my own mortality, and I try to keep cheerful. I have also cultured 2-3 circles of friends with whom I keep in regular, sometimes daily contact. I always tell them a bit about my cancer, as one of the worst things to do is to bottle it up - I canāt understand those people who have cancer and refuse to talk about it.
Iām not really into mindfulness but I do believe in living for the moment, the present. Donāt think too much about what the future might bring - even if youāve been doing that all your life.
Best wishes
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Hi @Julian and welcome to the forum. I think what you have shared with us is just so valuable and useful to us all. There must have been some tough times in the last two years. However, I love reading about the support you have embraced which has helped you to move forward. Really inspirational 
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Thank you @Julian, and it really is good to see and share someone elseās journey.
I, like you, seem to have been in lockdown forever - and the diagnosis in a time of isolation was so miserable.
I shall maybe see what the hospices nearby offer while we are still ultra Covid careful, but you mentioned SCT. Have you had the transplant? How did you get on? Are you happy to share your experiences (I havenāt spoken to anyone who has themselves been through the procedure).
Thank you for replying and offering help xx
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Hi again Chris,
Yes, I have had a SCT and it wasnāt particulary pleasant, but it depends on your frame of mind I think. I did feel very tired, experianced loads of unpleasant side effects, but through it all I was able to maintain an almost existential view of what was happening to me. For me that seems to work, but thatās not like being in denial.
I tend not to feel sorry for myself because that cannot make you feel better, itās not a road to recovery. I donāt ever ask āwhy meā as to me that implies āwho else would you give it to instead?ā.
30 years ago a relative of mine only lasted a year with my cancer, and I just think that the treatments have advanced so much since then that our chances are so much better now.
I hope you find help at a local hospice - you might need a GP referral - I was referred because my cancer is technically āterminalā, as itās potentially treatable but not usually curable (I have come to terms with that, too).
Best Wishes
Julian
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I research, so Iāve read everything there is, and surviving the procedure sounds perfect!
My cancer too is incurable and with a terminal prognosis unless I can have a successful SCT.
Iāll keep my fingers crossed for us all, my thoughts positive and carry on trying to survive xx
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Hi @Julian, a great big welcome and thanks so much for your post and I agree with everything you say. I am sure you will help so many others by sharing your experiences, it is what our forum is all about.
I have definitely reflected on who I really want to spend my time with and what I want to do. I am relinquishing a couple of commitments which I really was not enjoying.
Please keep posting as I am learning so much about myself from your thoughts.
Take care and keep on keeping safe.
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Hi ChrisCKW
I know where you are coming from but only in so much as I too am on an Azacitidrine regime, that until last month, matched your cycle to treat my Acute Myeloid Leukaemia.
I am starting my 10th cycle on Monday.
Those injection sites do play up donāt they!
I have found that different parts of my body react differently. The worst used to be my stomach [avoid the belt line] but now it is my thighs [??]
I am fortunate in that I have now been put on a five day cycle so do three days in my arms and two in my stomach.
I have found that Hydrocortisone ointment [provided on prescription] helps and I have also tried Evening Primrose oil which didnāt make much difference for me but has for others in our situation.
A friend who had cancer told me not to run with the highs and lows of treatment but to take everything on a level field and I have found that that helps as does Carpe Diem.
Good luck with your present and future treatment.
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Thanks @JohnC, Iām using a 35% arnica cream to minimise the bruising, and lots of moisturising cream to keep my skin from hardening and drying. Iāll mention the steroid cream to the team when I next have chemo.
My worst place is arms, it seems to really catch on my muscles as well as inflaming the skin. Also the injections are administered to the outside of arms and front of thighs which seem to be more vulnerable to minor accidental bumps and Iām an on-my-side sleeper so it affects my sleep (in addition to the side effects!)
Iāve only had 2 complete cycles, so my blood levels havenāt seen any improvement up yet, so hopefully that will change soon.
A 5 day cycle sounds a lot more bearable, so fingers crossed that works for you 
Keep well and thanks for caring
Chris
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Another potential serious threat to my survival.
Recently Iāve experienced double vision in my right eye, which caused me great alarm.
I immediately contacted my local branch of Specsavers who gave me an emergency appointment on Monday.
I had a full examination including a SCT scan on both eyes.
I saw the ophthalmologist after this who told me that the scan didnāt reveal any problems in my eyes that would cause double vision.
The cause is related to something in my head, he has referred me to the neurology clinic for a more thorough examination.
This has really scared me and has added to the stress and anxiety Iāve been living under since 2014 when I was first diagnosed with terminal MDS.
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Hugs. I hope the appointment comes through very quickly xxx
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Oh @Blackhat, I bet this is scary for you and being on that rollercoaster with another department in your hospital. Also the not knowing is the worst feeling of all
Please keep sharing what is going on for you and how you are feeling, so we can support you and if you would like to talk to someone you can contact the 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
Take lots of care xx
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Thank you Erica and Chris,
Of course Iāll post any further developmentā:crossed_fingers:
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Thinking off you @Blackhat
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Thank you Nicholaš¹
Best wishes
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