Welcome back!

How would you have liked people to be when you were diagnosed?

Don’t know who your saw, Lelly, but it sounds as if they were pretty stressed too. I was diagnosed in 2013, and have nothing but praise for the way things were handled by the then Head of Haematology, who took time to explain the details, discussed treatments and prognoses. Care since then, by the specialist nurse on the phone and on my occasional visits, has been good too. But I’m one of the lucky ones; hydroxycarbamide plus aspirin keeps platelets at an acceptable level with no significant side-effects, so don’t know how they would be with more complex cases. Also fortunate to have interested wife, and daughter in next village, to keep me on the straight and narrow. I found that delving into all the scientific information and engaging with MPNvoice and Bloodwise/BloodCancerUK was very useful, but that’s a reflection of a lifetime’s career.
One minor positive of COVID; I had to attend ARI daily in Jan/Feb for radiotherapy for prostate cancer (yes, I know, a bit greedy having two forms of cancer!) and at least the pandemic kept most of the traffic off the roads, so the B999 was an easy drive.
Happy to talk if it would be any help.

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Hi
Thank you so much Nichola your comments are much appreciated.
My family is my sister and she has her work cut out with her own daughter and helping to support her and 3 Grandchildren.
Yes I have seen her a couple of times and had a lunch in the garden with my poor niece so it helped…
I do feel for everyone and find there is a huge gap in information or professional support which seems to depend very much on where one lives…
My concern is that every other pain or discomfort can too easily be put down to my ET and it becomes a blanket for anything else that may be going on…
No I am not neurotic or a hypochondriac but have had various odd “things” for which I can find no explanation…I wonder if others feel that way?
Yes my dog ( sadly lost one in May) is a great pal and we are looking forward to welcoming another older boy to our home very soon…
I you are well and coping in these difficult times…
Lelly.

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Hi DickM
Am sorry to hear you’ve had a double whammy to deal with and appreciate how stressful that must be for you.
Thank you for your kind words. I think all NHS should be praised and taking that and the stressful times they have worked and are working in into consideration, I still feel my Haemotologist gave me the minimum of advice or help in fact my GP said he “fobbed” you off when I saw her regarding headaches at the behest of my Haemotologist.
I do appreciate the groups you have mentioned and agree they are very helpful…
hopefully you are getting all the support and help you need and I send my best wishes to you…
Lelly.

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Hello Erica

I’ve just been diagnosed with B cell Lymphoma again. I first got it 14 years ago and had R-CHOP. One thing I did notice was that when my hair fell out other people were at a complete loss as to what to say. To my amusement the only thing they could come up with was ‘Oh, what a nice shaped head you’ve got!’

Laura

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Hi @LauraMM and welcome to the forum. Wow, 14 years. Have you been on active monitoring or was treatment successful 14 years ago. How are you feeling about things?
I have follicular lymphoma so am really interested in your story - obviously only if you want to share.
Your last sentence did make me laugh, what a funny comment to make :woman_facepalming:

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The fact that I looked like Uncle Fester from the Addams family passed my loved ones by :slight_smile:

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Oh, @LauraMM a great big welcome to our forum and I certainly do not want to laugh at something that can be so traumatic and make you feel like Uncle Fester, but the ‘oh, what a nice shaped head you’ve got’ is classic isn’t it and actually proves that people just do not know what to say.
I look like Friar Tuck as I have had a skin cancer op on the top of my head, people pretend that they haven’t noticed it when I can see them looking down on as I a a bit short.
It must be a great shock to you for your B cell Lymphoma to have returned after 14 yrs and I wonder if you have any support from friends and family.
Well now you have us and I really look forward to hearing more from you.
The Blood Cancer UK support line is above if you would like to talk to someone.
Take lots of care of yourself.

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Hi @Lelly I certainly do not think that you are neurotic or a hypochondriac,I also notice and worry about every change, ache and pain and wonder if it is my CLL.
I am so sorry that you lost a dog in May and as the saying goes they are man’s best friend and give unconditional love and perhaps a even closer bond during Covid times.
I look forward to hearing all about your ‘older boy’ when he arrives and please let us know how you are doing.
Take lots of special care of yourself.

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Don’t worry about me - I’ve had it easy with the ET and am treading carefully with the prostate. But you are making me feel slightly guilty, because while you were being in effect fobbed off by ARI, I was having regular phone conversations with one of the specialists on their direct lab line, about the possible interactions between the prostate radiotherapy and the ET and how to handle them.
Do wonder if things will change, for better or worse, now there’s a new HoD there.
Out of interest, where roughly in Aberdeenshire are you? I stay in Methlick.

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Hi DickM
I actually live in Angus so it was Ninewells I was/do attend…
I do know Aberdeenshire and Methlick, grew up in Deeside and worked over the entire county…
I am glad you have a positive experience and hope you are managing … thank you for your concern…
L

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Hi Erica and all that have replied

I hope you don’t mind me joining this thread so late?

I’ve been touched by everything that has been said here. It’s such a devastating time, immediately post-diagnosis, and what people say and how they react can affect you for a long time.

I had an unfortunate set of circumstances surrounding my AML diagnosis. Two months before, me and my husband’s best friend was diagnosed with terminal lung cancer - over the phone, incredibly, because of the pandemic. As he was our dearest pal, we looked after him (he had no family near by) and he died exactly 4 weeks later. I was allowed to be by his side and hold his hand in hospital as he went. It was devastating. He was only 53.

One month later, me, my husband and our son held a small memorial for him at a cove we all discovered together. On the way back, I couldnt breath as I climbed the steep cliff. I was usually very fit. This led a few days later to a diagnosis of AML, and I found myself on the same ward our friend had died on, with the same nurses. Obviously, not a great start mentally to the path that lay ahead.

However, the experience with our friend did teach us some valuable lessons. He had asked us to take charge on his behalf of all messaging and updating of friends. We found it to be an enormous and time-consuming task (he was very loved by many) and worse, it made you repeat the horrors of the situation, over and over again. There was no escaping it. So when I became ill a month after his death, we decided to only tell a few key people, and to warn them in advance we wouldn’t be doing minute-by-minute updates or replying to every message. I essentially turned my phone off to all but my husband, son and oldest friend once in hospital. I needed it to be this way - I needed to curl up in my own mental space - but I can understand other people might appreciate lots of messages of support.

Unfortunately, word does get out, and a few friends were - incredibly - a bit miffed that I did not want to enter into a dialogue with them whilst being treated. But our friend also taught us that if you can’t lay down boundaries at a time like this, when can you? So we did.

In some ways, it felt like our friend had guided us on how to handle all of this. He seemed to instinctively know what needed to be done and how, whereas I would have been floundering if it weren’t for him. It felt as if he were there for us too, in our time of need.

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Wow @Fullofbeans, that must have been such a difficult time. You obviously cared about him very much and he was lucky to have you by his side. It must have been very hard emotionally, informing everybody - that has to take its toll.
It really struck me when you said sometimes you just wanted to curl up in your own mental space and I’m glad that you learnt that if that’s what you need to do, then do it. Whether friends understand or not is beside the point, if they are a friend they will stick by you whatever decisions and choices you make.
I’ve been like that for the last few weeks. I just need to be in my space with my family. Some may see it as selfish but I’ve learnt, like you, that sometimes we just need to do what’s right for us and that’s ok!
It’s just wonderful that your friend played such an important part in guiding you - so special X

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Hi Nichola75
I hope your time with just your family recharges you. And I hope you are feeling well and able to enjoy something of this peculiar covid summer.
All the best
Fullofbeans

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Managed to get away for a couple of weekends which was lovely! I feel recharged at the moment but I’m back to work as a teacher next week and daughters the week after so ask me again in a couple of weeks :woman_facepalming::joy:

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Hi @Fullofbeans, I was really struck by your post and it started off with the words ‘what people say and how they react can affect you for a long time’, so true.
You have really had a traumatic time, not helped by Covid times.
Your dearest pal dying so quickly after diagnosis must have been so devastating.
Then your diagnosis came so quickly whilst you are still grieving and emotions so raw.
Thanks so much for sharing your valuable lessons, again so true.
I also ‘needed to curl up in my own mental space’ but was not so good at you at setting boundaries.
It is a time to find out who your real friends are.
Yes, your friend was also there for you in your time of need through your experiences.
Thanks, I have learnt a lot through your post.
How are you doing now?
Can anyone else relate to this?

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I’m an ex-teacher so I know what you mean, Nichola75! Very good luck with that. It must be an ultra-worrying time to be at school, when you are a blood cancer patient/survivor. I hope they’ve put in place all the precautions they possibly can for you.
But good to hear you’ve managed to get away - it does one a huge amount of good to have a change of scene.
All the best
Fullifbeans

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I’m doing really well now, thanks Erica. I’m 6 months post stem cell transplant, and I feel fantastic. It has taken longer to process our friend dying, as I just had to switch off from that thought once chemo was underway, but in some ways, that was a good thing. I couldn’t have coped with both strands of horror at the same time. To be honest, I’m amazed at my capacity to mentally have dealt with the last year. It is incredible how resilient the human mind and body can be. Maybe it is a protective mechanism- but whatever it is, I welcome it. I did have a worry that I would be paralysed by fear of relapse once my treatment was over, but I have managed to keep that at bay and live life (as much as is possible in these covid times.)
Hope your situation is as equally good.
All the best
Fullofbeans

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They have but in reality social distancing in a primary school is impossible :woman_facepalming:

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What did you teach @Fullofbeans

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Oh gosh yes - primary must be impossible. But such a lovely age to teach. I hope it all goes well.

I taught English Lit and Language at college; literacy and numeracy in mental health units, and I first started out teaching EFL in various countries. It was great fun, but eventually I went in other directions.

It’s not been the easiest of jobs in the last 18 months. Teachers have taken so much flak, haven’t they? Yet many have gone above and beyond, and have been working on the frontline with little PPE for a good while. My son’s teachers have been amazing. It’s so frustrating that teaching is rarely applauded, unlike medics and the fire service etc - but it is just as essential and difficult. Ah well - no one does it for the laudits or pay. But it does make me sad when I see the profession so criticised. Rant over!

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