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Newly diagnosed - MPN

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I am.newly diagnosed with Polycythaemia vera (PV) + ET
I work.in NHS as a midwife and am worried about risk of infection

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Hi @Walburd I expect that you are still in shock and very naturally worried about your risk of infection.
Have you spoken to your employer, perhaps they might do a risk assessment. Your union might be of assistance too.
It is so scary as restrictions are lifted and perhaps all you can do is take all reasonable precautions on your side.
We are here to support you and if you would like to talk to someone at Blood Cancer UK their support line details are above.
Please keep posting how you are and I look forward to hearing more from you.
Perhaps someone working in the NHS will be of more help.

Hi @Walburd i am also a midwife with the NHS. I was diagnosed with Non Hodgkins lymphoma jan 2020 so i was working from home and sheilding in the pandemic. I have to say my trust has been amazing and i went to see occupational jeath the other day and until they kn9w how effective the vaccine is on blood cancer people and until we know my antibidy status then they are happy for me to work from home doing admin tasks. I was part community and part hospital based midwife so appreciate would have been harder as a hospital based midwife. Are you off sick at the mo as I know after initial diagnosis things were bleak for a while and i felt so numb. Before you work clinically again you will need a occupational health review. Hope that helps
Mandi x

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@walburd

I was diagnosed with Polycythaemia vera (PV) last August. It was shock and still hard to believe but the scary thing was people saying it was rare and not curable. That along with it being a type of blood cancer which makes you think how can you remove that?? Despite all this… it’s a very much watch and wait condition… you will have a series of blood tests to monitor your levels and either be on medication to keep them stabilised or venesections. A year in, mentally it’s a worry but apart from the inconveniences of blood tests and the odd appointment, it’s very very manageable to the point you feel a bit of a fruad. I work in a school and so far my employers have let me take charge of what I want to do when I want to work which is great but I think covid is more of a priority for them.

Definitely have a note book handy or text yourself questions you want answers too so when you sit down with your medical team or your employer you have them accessable as I know when your sat down in a formal meeting it very quickly feels intimidating and your scared and anxious of what they are gonna say to then be questioning them or your head goes blank with expected worry

I’d be happy to discuss or answer any questions you may have from a patient perspective. Like I said in fairly new to Polycythaemia vera (PV) so we can learn and share together as I’m no expert on Polycythaemia vera (PV) just I know there isn’t much out there on it.

I know there are several people here with et so I’m sure they will post too…

The important thing is you’re not alone and this is a great place to come to for all the ups and downs and everything in-between.

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Hi
No.am.not off sick.only had 2 days sick.in 7 years
I have spoken to occupational health and awaiting assessment .just got to keep away from covid positive women at present
I had these symptoms well over a year so worked through pandemic and.looked after many covid pos plus other infections .
It’s been an hard year for me personally and professionally
I didn’t find our trust supportive

My mum got sick so ill and tonput her in a nursing home she has vascular dementia
So I had to sort everything even though am youngest of 7

My sister a paranoid schrienpenia she got covid was sick and basically I do everything for her too

I found out my son was sexually abused when he was 15 in NZ - we lived there 13yrs
So he’s been suffering PTSD
Think he has a social disorder
He’s also asexual and ? Trans gender
He’s fine now that he’s talked about it and it’s in open now

Then my daughter whos bisexual suffered really badly with mental health she had loads of negative people in her life well she tried to commit suicide 3 times
I took her to crisis team but had to take time owning from work as I wasn’t allowed sick time and then got called sinto work next day
She good now I got her hypnotherapy worked a treat she is know at Uni

My head was all over the place and making mistakes

Am just so.lucky I have a great husband who I can vent to

I was also fed up at work cos I was getting all the workload while some of the young midwives were allowed to sit at desk

So basically getting diagnosed is the icing on the cake for my year

What else is life going to throw at me

It’s a good job I have a supportive family I don’t have many friends cos am always working as am the main bread earner and because we have spent £65000 coming and fro to NZ and back we had to start all over again in our 50s qith amortised etc

My.pension over in NZ
So I can’t give up work although I would love to or reduce my hours but am trying to get my pension in here

So I will try keep positive and surely there is some good luck out there for me

Sorry am going off on one but great to get it off my chest

Life can be so challenging
But I stand up tall carry on and do what ever is needed

My colleagues get massages off me all time they all.live a Angie Massage so I will carry on being who i am THE WARRIOR

Thank you for this forum is great to beable to talk to others and I hope you are all well.in yourselves at moment

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Thank you so great to hear from.everyone
I will try keep.smiling

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Thank you Am awaiting occupational health

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I have spoken occupational health my manage Ron AL
So I have to await her return
Am working Saturday and Sunday and all staff are aware so am sure they will keep.protected until I get my assessment

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Gosh, @Walburd you certainly have had more than your fair share of challenges.
Family issues also have so much of the emotional and familial angles too.
I am so honoured that you felt you could share such personal issues with us.
We are here to support you and if you would like to talk to someone the Blood Cancer UK support line is also there for you.
Please update us how you are and how you are getting on.

Thank you
Everyone keeps telling me Am a strong person
I keep.smiling so that’s good
I manage things well
Am an open person so I don’t.mind sharing
I have got through so I am sure I get through whatever life throws at me
My main concern is infection risk with my job so am eager to have my risk assessment

You can all call.me Angie
Walburd just a user name
I will definitely keep in touch this forum fanastic
I rang specialist nurse today they getting back to me next week

I am scared but got to keep positive
I am happy to listen to anyone on here
Hope Sue OK and not feeling too lonely
Lifr throws things at us for a reason

I just wish I could afford to give up work and explore have adventures get myself into groupd and make more friends etc etc but basically I can’t but I can dream and be hopeful

Love you all already xxxxxkeep up the amazing support.

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I have found @Walburd that people really understand me on this forum in a way that my family and friends cannot, it helps me not to feel so scared and lonely.
Financial constraints are not discussed enough on this forum too.
We are always here for you so look after yourself Angie

You are certainly a positive person @Walburd and it’s understandable for you to be worried in your circumstances with so much to contend with. I hope things improve for you but as @Erica says this is a safe place for people like us talking to other people who can understand what we’re going through. Let us know how you get on.

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How is everyone today
5 days off work and looking forward to the rest

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Good morning i am feeling good. . I decided to botebthe bullet and go on holiday so on saturday we flew to Thailand. I must say i felt very safeboth on the plane and so far in resort. @Walburd when is your occy health appointment, my next one is in january and they have me working from home til then. .

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Hi @Walburd, make the most of your 5 days off, I hope the sun is shining for you, it is here.

Wow, @Mandi713 that sure is exciting, Thailand, I’ve never been and seeing as I am living my life vicariously through others I look forward to hearing all about it. I am so glad that you have felt very safe so far as it means you can really relax and enjoy yourself.
It’s good to hear that you are still working from home till January.
How are others finding their work conditions, especially when newly diagnosed?

Wow @Mandi713 hope you’re having a wonderful time :desert_island:

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So glad you’ve found this community Angie :slight_smile: Hope you’re enjoying your days off!

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Dont know yet
And have to say some of coordinators have been a bit funny with me
Matron wants me redeployed to PN ward don’t know how that reduces the risk
Then yesterday ends up looking after covid positive women
Good job I always wear correct PPE
Our unit is a place of if your face fits
Lots of the staff are big friends outside work so no win situation
I was quite anxious and nervous I would say this weekend
I did some.xmas shopping today with my hubby and I could not cope with amount of people out and about
Having the constant sweats dont help either but I suppose I just have to learn to live with it all

Hope your having a nice holiday
I have 5 days off but so much training to catch up on

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Am trying but had abot of a meltdown when I went xmas shopping with my hubby
And I got lots of training to catch up on

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