Thank you so much, @PollyVera. The fact that you are here suggests some troubles of your own. I hope you are doing ok? And love back at you too. 
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Hi @ fullofbeans
How are you getting on ?
I am pretty good, I am in the hospital at moment as my counts are low due to latest chemo. They should be on the way up now, been having the Filgrastim injections to kickstart my marrow and bring the neutrophils up.
I’m awaiting results of my last bone marrow test, I got the first part back, it’s showing Leukemia is in remission, which is great. Got to wait on result of MRD though to find out how my abnormal gene is responding to the chemo, so bit of a nail biting wait to say the least 
Hope all is good with you and the family , is hubby away working just now ?
Love & best wishes x x x
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Hi @Fifimac. Sorry to hear you are at the hospital. Are you having to stay in?
Isn’t waiting just the worst bit! Please let us know when you get your results back x
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Hi @ Nichola75
Yes inpatient at the moment , have been given a weekend pass though … looking forward to my own bed and my own routine , lol.
Back on Monday to see when I can start my next round of Chemo and also hopefully won’t wait too long for test results. You’re right … waiting is so hard for sure !
Never mind , the sun is shining here today , gives you a bit of a boost 
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The sun really does make a difference!
Enjoy every bit of your weekend. I hope the sun shines some more for you.
I hope Monday gives you some definite and the waiting ends 
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Hi @Fifimac!
Great to hear from you, and so pleased to hear your first tests are showing you are in remission - that’s such brilliant news! You’re off to a really good start.
I’ve heard on this forum, and on an Acute Myeloid Leukaemia facebook page, and a stem cell transplant Facebook page, that neutrophils being slow to rise is quite common. I’m sure it can’t be nice waiting (and wondering) though, or having those injections. I think I actually had one injection to kick start things - must have worked!
Oh gosh, waiting for important results is horrendous - I do feel for you. Do you know roughly when you’ll get the result? Do you have enough to distract yourself in your room? I hope so. Send as many messages as you like here if that would help too.
How are you feeling physically now, @Fifimac? Has the chemo been ok? Each round can be quite different. I imagine your nails have been the only thing you’ve fancied chewing lately…
I’m ok, thanks. I finally had the dreaded covid last week, after three years of fearing it, hiding from it, and then finally not worrying too much. It was quite strange to finally see that line on the test. At one point that would have struck fear in my heart - but it was all ok. I felt feverish and achey for 4 days, and after that it was just like a cold. Oh, and despite a consultant saying otherwise a year ago, the CDU phoned me and said I was eligible for the antivirals - but I didn’t feel I needed them. So I hope when you’re a bit better, you can not worry too much about that at least.
I had my two year post-transplant check up today at the hospital which did my transplant. It took all of 30 seconds - ‘You look well! Your bloods are normal. Fantastic. See you in 6 months!’ The 30 seconds and those couple of remarks were…music to my ears 
As you must well know, after so long in hospital and after so many appts, blood tests, and discussions about this and that, it’s just wonderful to be in and out with no little health niggle to ponder or worry about. Hopefully before you know it @Fifimac, you’ll be two years post-transplant and feeling healthy, happy and overjoyed at 30 second appts.
Yes, my poor old husband’s at sea (although he’s had unusually calm seas for February, which has been a massive bonus) ; our son’s working hard at his A levels (although I’m sure I can hear his video games when he’s ‘working hard’!) and I have a skip in my step because it always feels wonderful to be well after a bug, and also to be 2 years away from the harrowing transplant period.
How are your family and friends?
I know it can seem impossible now, but hopefully you will feel fabulous again soon @Fifimac. In as little as 6 months, with a bit of luck. I can remember suddenly feeling the life flowing so hopefully through me, which came with a burst of energy and euphoria. It was actually a very exciting and moving time, where life felt full of possibility and promise. I hope you’ll be enjoying those sensations in a matter of months, and these current worries will be behind you.
Lots of love X X
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Oh @Fullofbeans that is really good news and I know from personal experience I would want to tell my nearest and dearest, but cannot as they are working away.
Thanks for telling us.
You celebrate and really spoil yourself, what a brilliant 30 secs…
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Thanks so much, @Erica! X
i vape marijuana. it helps with anxiety and takes the edge off everything. no side effects and it won’t interfere with any other medications. i think you can finally get it prescribed now under the nhs. apart from that - keep reminding yourself that medical advancements go forward - this disease will be cured soon. all we can do is hang on and wait.
Hi @ fullofbeans
You really are such an inspiration and have the ability to describe everything in fantastic detail.
So sorry to hear that the dreaded “Covid” caught up with you !!
However I’m very pleased that you escaped from being too ill.
Fabulous news re your two year milestone
What an amazing feeling that must’ve been to hear those words.
Elated I bet so happy for you , your husband & son.
Also for your sibling donor , it must be an amazing feeling for them to see first hand what a difference they have made to your life. No greater gift really , than giving someone the chance of life.
I am keeping really well physically, again no serious side effects from last chemo. I have been so lucky to have escaped a lot of them.
Mentally, I’m finding it harder, I am a very strong person and like to be in control. However the longer this journey is lasting , the more anxious I have become. Not all the time but more often than I’d like.
Listening to Paul McKenna apps to try and help me to relax and fall asleep at night.
All the family have recovered from their bouts of Covid thankfully. It wasn’t a great Christmas for any of us. It’s behind us now 
so onwards & upwards.
All the best to your son for his studying & exams.
Hope your hubby has heard your good news by now, he will be so happy & relieved.
I will keep you updated on my progress.
Have a lovely weekend
Much love x x
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Thank you for your supportive and positive post @hackneybloke.
We must add that any use of marijuana should be relayed to your health care team at all times. Any supplementary drugs should be considered in regards to contraindications and side effects.
Medically prescribed products are only in use for specific diseases:
Medical cannabis (cannabis oil) - NHS (www.nhs.uk)
Many thanks
Gemma
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I completely understand the battle with anxiety, @Fifimac. I think I’m like you, and found the lack of control over the whole situation difficult, and also the initial lack of control over my own mind. It’s just awful when your thoughts scatter off all over the place - especially when those places are dark and scary. I found it hard to rein in - and thus the great lengths I went to get it all under control. I hope the Paul Mckenna apps are helping you with this. It’s not really a side of cancer people talk about all that much, is it? Not even the medics looking after you. And yet our mental health is a large part of our health, and good mental health must contribute somewhat to our recovery. It’s such a shame hospitals can’t dedicate more resources towards ensuring we’re all ok emotionally throughout long and arduous treatments such as this.
Would a lavendar spray on your pillow help you to sleep? I used one, although I seemed to sleep all the time - I think it was my mind’s way of coping: Oblivion!
Am so glad you’ve not had a rough time with the chemo though - that is one very good thing.
Thanks for your kind words re my news. And yes, my brother is rightly delighted to see the difference he’s made. I wish I could also show and thank the red blood cell and platelet donors. I feel forever in so many people’s debt.
Am glad everyone got over covid ok. You really did have everything going on at Christmas. Let’s hope Christmas this year is a different picture entirely, and that it’s a chance to celebrate.
Ha ha, ‘onwards and uowards’ is one of my phrases too. I think it’s the perfect phrase for these very unusual circumstances - to just keep moving forwards, away from the setbacks, and with the belief that we’ll get to that higher, safer ground.
Onwards and upwards, @Fifimac!
I’ll be crossing everything I have for you. I hooe the next few days are kind to you.
X X
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I think the mental challenge is one of the hardest and I have seeked support many times over the last 6 years due to feeling so out of control. Is the app helping?
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Hi @fullofbeans & @Nichola75
Funnily enough I have using Lavender pillow spray. My cousin sent me box of “Tropics” products , developed specifically for cancer patients. There is a whole range of skincare products.
Paul McKenna app is ok , first night I tried it , I never heard much of it as I fell asleep pretty quickly, lol. I was either tired or it did work. I do find that his voice does not annoy me , some of the relaxation apps don’t relax me due to the persons voice.
I have mentioned often in the hospital about the absence of Clinical Nurse Specialists…especially as nowadays mental health is such a high profile thing.
Having someone to talk to and help to reassure you would be so beneficial. The nursing staff do their best if you ask them anything but I find that they often as not are not so clued up on everything. It is more generalisation.
Well ladies , I have enjoyed my time at home so far that’s for sure. Off to my comfy bed now.
Thank you both for listening and understanding.
It’s so nice to keep in touch.
Goodnight & sweet dreams x x x
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I have been lucky enough to be referred twice by my consultant to a clinical psychologist after asking for help with my depression and anxiety
After my first transplant I found myself in a place that I wasn’t sure where I belonged
I spent around 18 months with the psychologist which helped so much.
It took a couple of weeks to get a referral
My local hospice also had a mindfulness class and I had one to one when the lady taking the class realised I needed help for 18 months also
The two combined gave me coping strategies and I still use them to this day
I use The Works products which I love
Talking about apps
I have found BBC sounds a great help
I think I find comfort in peoples voices and desert island discs and strictly come dancing are ones that help me fall asleep 
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Good to hear some people do get the help, @2DB - although I’m sorry to hear you had depression and anxiety (although I’m not surprised after such an ordeal.)
I love Desert Island Discs too - I should have thought about listening to that. I love the music as well.
I hope you’re feeling better on this front now? You’ve been through some tough times, with two transplants. It’s fantastic that you can share your experience in this area.
Hope you’ve had a lovely weekend.
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Hi @Fullofbeans
Thank you and thank you for asking
I had a lovely weekend hope you have too
I’m doing well, depression and anxiety is always a work in progress, they are both bearable
I have an amazing brother who I have spoken to every day for the last 3 years who is my biggest supporter and I actually have a life I’m enjoying which goes a long way to conquering depression and anxiety
I still have my moments but I’m managing not to stay there
I’m still shielding and happy to do so I quite enjoy being out of the rat race
Bless you
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Oh that’s so lovely to hear, @2DB - what a wonderful brother you have (I do too - he was my donor!) Your brother must really appreciate you as a sibling too. It’s a special relationship, isn’t it, because as siblings we have a long shared history and often know each other inside out, which brings a profound understanding.
Having a life with elements which bring you joy and satisfaction is so impotant too. I find the things which make me happy these days (after the mortal shock of a cancer diagnosis) are so simple: walking the dog; spring sunshine; managing to sneak a hug from my teenager; going to the supermarket to choose my own food (really!)
I’ve had a couple of depressive episodes in my life too (in my 20s, and post-natally) and I know it can take time and patience and work to find oneself out on the other side of it. I’m so glad you’re almost there.
But yes, keep enjoying the shielding, if it works for you! I must confess that as an introvert, I am still claiming the need to shield when it suits me (although my immune system is probsbly fine now.) It’s a bit naughty, I know, but introverts do have to live in a work world where regular socialising is expected, and it’s exhausting. So I’m living a quieter and much happier life now as a result of being able to say No to social things. I suppose that’s one benefit of cancer and pandemics!
Hope the sun is shining where you are @2DB. It’s beautiful here in Cornwall this morning, and I imagine it is elsewhere too
Have a lovely day.
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Hi @ Fullofbeans &. @2DB
How are you both ?
I’m so sorry to hear that you’ve both suffered with depression at various times. It must be awful. I have had some “ anxious “ moments since this rollercoaster ride started but luckily not depression.
I had another first yesterday !!! I took a reaction to a platelet transfusion… shivery, cold and just a generally weird feeling, thankfully I was back in the ward anyway and they gave me IV Piriton & Steroid.
Felt better within 20 mins or so.
Seemingly you can receive umpteen platelet transfusions and be fine then out of the blue your body reacts differently !
I feel absolutely fine today thankfully, going forward if I need anymore platelets then I’ll get Piriton & steroids beforehand.
The body is definitely a complex machine that we have no control over at times 
Onwards & upwards as we say @Fullofbeans 
today is a new day. 
Best wishes to you both. Not so sunny up here in Scotland , but brightening up slowly
Fiona x x x
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Oh @Fifimac, I’m glad you’re ok after that reaction! I had heard that blood products can cause a reaction - nurses would always tell me to ring for them during a transfusion if I began to feel strange - but you’re the first person I’ve ‘met’ who has actually had that reaction. How strange, after the many transfusions I’m sure you’ve had. It must be a particular person you don’t agree with!
Aren’t piriton and steroids fairly miraculous in controlling reactions? Really glad you were ok quickly.
Yes, I was worried my Acute Myeloid Leukaemia situation would trigger another bout of depression, to be honest. I couldn’t imagine living day to day after treatment without an all-consuming fear of relapse - but fortunately that has not been the case at all. I think I so thoroughly hypnotised myself into believing I am completely cured, that I probably chant, ‘I believe in my perfect health,’ as I sleep!
I’m very glad you’ve managed to avoid a depressive episode too during this time. It IS an emotional rollercoaster, so the dips are bound to contain something unpleasant emotionally to keep one company during all the isolation.
I hope the anxiety is not visiting at the moment.
And I hope the Scottish skies brightened sufficiently today.
My sister was a student at Edinburgh uni, and I used to visit and travel about a bit. I love Scotland. I think a lot of Cornish folk feel at home there, for various reasons.
Anyway, onwards and upwards and take care, @Fifimac 
X
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