Following my post (plea for help) a couple of days ago I’ve been absolutely overwhelmed by all the kind and informative replies that you angels have sent. They have helped me beyond my expectations.
Following my post & some early replies suggesting contacting my MPN team I called Guys Hospital. I immediately spoke to an MPN nurse and explained my situation. She called me back a couple of hours later and confirmed a face to face appointment at the haematology dept which I attended yesterday morning. Following a discussion I was taken off peg. Bloods were taken and I have an appointment for 2 weeks time for a full review of my situation. An urgent contact was made from Guys to my GP who called me whilst I was on the train home from the hospital. I have been prescribed 20mg Citalopram and given a follow up appointment in 2 weeks with them. They are also setting up counselling.
Our National Health Service has Shown, in this instance, that it’s systems work in a swift & effective way & for that I’m extremely grateful.
It’s been a real whirlwind & without doubt the hardest few days I’ve ever experienced in my life. I still feel dreadful and overwhelmingly confused but that’s where I find myself today. I just hope that I may be able to get back to who I was & try and salvage lost relationships- in particular my wife, who has suffered immeasurably from my quiet, withdrawn, introverted & uninteresting self which is the complete opposite from the man she married. It’s to early to say if it’s too late to rebuild my life but I have a glimmer of hope at least I guess.
The experience, empathy, knowledge & love that is shared within this unique group of beautiful people who are spread 1000s of miles apart is astonishing & a true reflection of all that is good in humankind.
I thank you all from the bottom of my heart.
Mark x
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That is the sort of medical outcome we seek. Figuring out the cause of the problem and finding a solution that fits one's individual condition. Wishing you relaxing times and smooth healing.
It helps that NHS was all together on one this one...
Soooo glad to hear you are getting things sorted. This is the NHS at its best! You will get back to normality now. Please let us know how you get on and don’t forget we are all here to help
Glad to hear that you are on a path to recovery. Good to hear that your healthcare providers responded so promptly and in such a helpful fashion. The steps you took to reach out for help will enable a recovery to a much better life.
Wishing you healing and all the best moving forward.
That is great news. Well done to you, the team at Guy's and your GP! Presumably, it will take a little time to start to feel better, but I really hope this will have given you and your wife some hope that things will start to change.
Glad you've been swept up in the nhs arms.Here's hoping that the meds will help relieve the situation and coming off Peg will confirm it was the issue.
I’m so pleased that you reached out and are now heading in the right direction Mark. You have been brave to share your struggle & in doing so you will have not only helped yourself but also no doubt others who have witnessed the out pouring of love & support from this incredible community. Wishing you all the very best for the future ❤️
fab news, didn’t realise you were with Guy’s I am too. You are in amazing hands. Just do me a favour no matter how hard it will be. Tell your wife you appreciate all she has done. And give her a hug.
Glad you’re getting the right help. Sometimes the NHS does work together well, hopefully you’re on the road to recovery. They’re a brilliant team at Guys. Wishing you all the best for the future.
So glad you rang and all the departments of your care team worked together to help your situation and are trying to things to get you back on your feet physically and mentally. Keep on going ech day taking small steps that suit you 💙
NHS and GP aside, give yourself a huge pat on the back for reaching out. Becoming part of our family has been a relief to us as well.Equally, you have provided valuable information that others can refer to.
Best wishes to you and your wife for your futures.
So pleased you have had a quick and practical response. I hope it soon makes a difference and you start to feel more emotional connections again and add colour back to the grey.
Despite current feelings of detachment you talk about your wife with a great deal of love and appreciation. Well done for having taken the first difficult steps. Support from what looks like a lovely bunch of humans at Guys can now help you build on those glimmers of hope.
Thank you again for sharing - your description of the insidious way that this has crept up on you will undoubtedly help others. Wishing you all the best.
Oh Mark, you are so welcome Your post brought tears to my eyes, but I m so glad that finally there's hope on the horizon for you
My family and an old friend had a "bit of a go at me" saying I had changed and become irritable etc over the last two years .
I tend to try not to moan or say how I feel.
To be honest 16 plus years of not always feeling tickety boo ( downplay on words there!) has taken it's toll, and whilst I m not depressed, I m not quite the lively granny that I was.....
I told them they were an unthinking lot, and to be a bit more understanding.
That was it. They simply hadn't thought. They're the sweetest kindest most loving family I could wish for, but when you haven't put up with a chronic illness and fatigue for years it IS very hard to understand isn't it?
To make you all laugh, my husband of 50 years has just appeared stark naked ( I m lying in bed at 8.30) brandishing a duster and a cup of tea announcing " The Naked Housekeeper has arrived"" !!!
That is priceless, Louise!! 😂😂😂😂. You - and your Naked Housekeeper Husband 😍- have just managed to enliven a grey day down here on the Channel coast. Wishing you the jolliest of days!🥰
Your post is very moving and honest. Sounds like you have had a battle to get the help you need and deserve, but it is also relevant to the rest of us. Chronic diseases and conditions do not come with just physical symptoms, they impact every aspect of our lives and perhaps we do become different to our former selves. You have certainly touched a nerve with me. I am definitely a different person, and despite a supportive spouse and family I often feel isolated, scared and despondent.I hope you can explain what you have been going through to your wife, and also acknowledge that It must have been very difficult for her.
As Hunter said the steps you took to reach out for help have enabled your path to recovery. Please reach out to your wife and share with her for a better life for both of you.
So pleased to hear your news Mark. There is light at the end of the tunnel and it’s getting brighter.
I don’t suppose it’s going to be easy, I have no idea what you are experiencing but there are people in your corner. I wish you all the very best matey.
it’s heartening to hear your story! You’ve not only helped yourself by reaching out to your care team, but you’ve also helped so many others by sharing your story. I hope that color and joy returns to your life with the healing steps you are taking. Big hug!
Have been off the forum for a week or two so missed your original post. I just wanted to say it IS an absolutely wonderful forum with many kind and helpful people. It has helped me and I’m glad it has helped you too. And, as you say, it’s international! All across the world, other people are reaching out and extending their hands.
That’s an impressive response! I feel it matches the courageous reach out you did. I was so deeply moved and a little stunned by your heartfelt original post. I’m also at Guys, amazing people. I think I might also be battling depression. That’s why I wanted you to know how massively helpful you have been in laying out exactly where you are. I cannot thank you enough. Your experience is hugely illuminating on a dark subject. I join in the out pour of gratitude and sincere wish for your mental health to improve and for some sweetness to return to your relationship. I believe Mark it almost certainly will, thanks in part to the bravery of your facing head on and sharing with us.
Thank you.
With all my heart.
Mark can I leave you one of the core beliefs of my SGI Buddhism from my mentor, which is fuelling me and I think helping hugely me navigate my path, of which you are also a massive benefit and contributor
“If you light a lantern for another, it will also brighten your own way." Please be confident that the higher your flame of altruistic action burns, the more its light will suffuse your life with happiness. Those who possess an altruistic spirit are the happiest people of all.”
that’s great Mark, it’s never too late and as you begin to feel better I’m sure you will see the world in a brighter light. Peg can be brilliant but not for everyone, it will be interesting to hear how you feel once it’s out of your system. This is of course for you and your docs to decide but you may not need antidepressants after a while.
If you speak to the right people at Guys they have great influence over many haems and even GP’s. That of course comes down the tree from Clair Harrison , she and her team have made a huge difference in improving the MPN situation in the UK but also throughout the world, it was her that really started this forum and also praise to Maz on here who keeps it in line.
We look forward to hearing how you get on and congratulations on taking action, I know it’s not easy when you are feeling depressed.👍
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Update: Bone marrow specimens sent and examined at new specialist's w/o my knowledge - now charged $400.....need advice!
UPDATE: Would You Like to Have a Patient Led MPN Support Group in Devon and Cornwall?
Diagnosis update - PV - in limbo 
Thanks
Referral to Guys/St Thomas's
