Polycythemia Vera

Recent diagnosis
, ,
21

So glad you managed to speak to your clinical nurse face to face! It can make such a different can’t it, actually meeting someone properly and chatting things through. How are you feeling about the hydroxyurea? There’s a bit of general info on this page of MPN Voice in case it’s helpful at any point https://www.mpnvoice.org.uk/about-mpns/treatments/hydroxycarbamide.aspx
If you ever need a hand looking for virtual support groups or anything do feel free to let me know!

You mention that you keep playing in your mind whether to be telling more people. This is totally understandable and you’re definitely not alone in not knowing quite how to navigate this part - it must be so difficult to know who to tell what. There was actually a conversation around this not too long ago on here, feel free to take a look/share your throughts on there! When do you tell someone that you have blood cancer? I know you got given a copy of the MPN booklet by your nurse, but if you want any other copies posted to you so that you can give them to other people to help understand your condition, just let me know. We’ve also got info on our website too - https://bloodcancer.org.uk/understanding-blood-cancer/polycythaemia-vera-pv/polycythaemia-vera/.

I’m so sorry to hear you’ve had a tough few days. Do you know if the psychotherapist will be back soon, and if he is doing video consultations, I know it’s still not quite the same as face to face. It’s not surprising you’re unsure how you feel both mentally and physically @Rammie18 . It’s still early days, as you say, so just take your time and look after yourself and remember we’re all here for you, both on this forum, and on the support line too.

2 Likes
22

Oh, @Rammie18, you really seem to be going through a rough time and I hope you do not have to wait long till your psychotherapist returns from his hols. I agree with you that the phone is definitely not the same as seeing someone in person, but as my son says ‘it is what it is’ in Covid times. It was great that you saw your CNS in person, albeit plus masks.
If we could see you in person we could see you winking at us.
As for telling people, what a dilemma, but as you say how would you feel in their shoes.
Me and my mind, it’s like a washing machine churning around and when I am feeling low the more my mind churns around. Don’t forget we seem to go through such feelings of loss or being ‘robbed of’ with blood cancer, we are all here to support you and don’t forget that you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk
I have found a bit of fresh air and gentle exercise helps me and definitely my music.
I have just seen @Alice_BloodCancerUK reply to you as well with great information and thoughts. Take care and please keep posting what it is like being you.

2 Likes
23

Hi Rammie 18,

I was diagnosed with PV 2 years ago , although I think I had been having signs and symptoms for at least 3 years before that.I suddenly developed a blood clot in my retinal artery and went blind in my right eye for about 4 minutes before it began to clear,all very alarming.My consultant told me that I had PV which is a form of blood cancer, one of the MPN group.My treatment is Hydroxycarbamide 500mg and regular venesections.My blood count very quickly dropped to within normal limits and has remained there, so far.I now have blood tests and a venesection every 4 months.
Have you read the booklet produced by Leukaemia Care entitled Polycythaemia Vera.It is an excellent booklet set out in a very readable form and is full of excellent information.
For about a year I have been acting as a telephone buddy for people with PV. It is quite a rare condition, the general public have, on the whole, never heard of it. It can be good to talk to someone who knows exactly what it is like to live with this condition.If you or anyone on this forum would like to chat about PV then please contact Kay Drew at Leukaemia Care Tel 08088010444 and ask to be buddied with Ian.We can take it from there.

With best wishes,

Ian

4 Likes
24

@63Minterne

Ian that is awesome… Thank you so much

I’ve got a appointment with my haemotologist tomorrow afternoon who will hopefully give me an update but having a buddy would be amazing. I’ll be sure to go through those channels after my appointment so I know where I am at and what I am doing…

Thank you so much for posting and for your time and advice… much appreciated :blush:

1 Like
25

Hi @63Minterne, a great big welcome of our forum and your helpful assistance to @Rammie18 shows the benefits of our community forum. We are all here to support each other and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
How are you feeling now?

1 Like
26

@Erica

Hi Erica hope you are ok…

I’m ok… just waiting for contact with haemotologist tomorrow… I’m not expecting much so not feeling anxious or nervous just moreso what happens next really. I have a feeling and probably rightly so that I’ll be in contact with school about returning which I’m ok with as I’ve been making tutorial videos on YouTube and know that my kids have been missing me and looking forward to me returning. For me, it’s just with things on the rise how it’s going to be for me going back. When I’m teaching I tend to forget everything and just focus on what I’m teaching and moreso the kids in front of me… but now I have thing little thing in my head that means I now need to be more aware and careful.

I’ll defo have a meeting with the powers that be at school… it’s just I’m a bit wary that their intentions may not be on my welfare and support going back…

Thanks for asking :slight_smile:

1 Like
27

Let us know how you get on tomorrow

2 Likes
28

Yes, @Rammie18, please do let us know how you get on.

1 Like
29

Hi All

@Erica @Nichola75 @63Minterne @Alice_BloodCancerUK @GrandmaJo @Ronald @SuBloodcancerUK

Just had a call from a lovely haemotologist over the phone.

I had written down a list of questions I wanted to ask but had to hold back and let her speak (something I know I struggle with esp when I have something to say, more of a fear of forgetting what I was gonna say lol… maybe a bloke thing)

The venesections I’ve had over the past few weeks have got my haematocrit level to 0.43 which is where they are happy with and my plalet count although its slightly high they don’t want me going on to any other mediations (interferon was mentioned) just yet as the venesection may keep me in check and do this for me… early days and time will tell… I’ll have another venesection in about 2-3 weeks.

She did confirm that PV is a registered as a cancer, and though I wasn’t angry at all those who said it wasn’t I now have closure on the matter and no longer feel a fraud. Big smile

I enquired about keeping a record of my current and past levels and there is a program called Patient Knows Best where you can track all your levels etc but unfortunately my hospital is yet to roll this out but defo be useful in the future.

She also said to contact my clinical nurse going over what we discussed to get the ball rolling on the prescription exemption form… I know I don’t need it at the mo but with Christmas and lockdown 2.0 I’d rather be prepared for any future delays… she (my CNS) has since been in touch and said she will get on it

Spoke to Doc also about a few symptoms I’ve been feeling… pains along my calf’s and forearms particularly first thing in morning and at night, difficulty concentrating and brain fog and mild itching but we both came to the conclusion that it’s still early days and as neither are effecting the quality of life at the mo, just to monitor it and if it gets worse to let them know.

With me not going on any meds at the moment it’s put my mind at ease and I’ll be contacting work about a hopefully phased return esp with all the new regs and policies it’s definitely going to be different to what I’ve come to expect and it’ll take time to adjust since I’ve not effectly been at work since April.

I’m on the waiting list to see the clinical therapist whom I’m glad to do so… as it’s really important to speak to someone outside of circles like I am doing here.

I’m feeling so much happier… now all my questions and concerns have been answered. It’s just nice to have clarity…

So I think that’s it really… thank you again you amazing and wonderful people with your care advice and support. It is very much appreciated… sorry if this sounds like a goodbye… it isn’t I just wanted to say thank you for you all taking the time in listening/reading and replying to my posts…

Take care and have a great weekend (though weather not expected to be great)

:slight_smile:

3 Likes
30

@Rammie18

Hi Rammie,

Thank you so much for keeping us posted on how you’re doing, we do hope it helped to talk things through with her. Though, like you say- it can be tricky when you understandably have so many questions. Have you been given any contact details from her, to give further opportunity to ask any questions that might have been missed?

It does sound like it has given you a lot to think about, Rammie, as you say, things like returning to work and looking ahead to winter- how have you found processing this all?

It was so very lovely to hear how supported you’ve felt from our online community forum Rammie, such heart-warming words and we’re so pleased to hear you will continue to be a part of the community :smiley: :+1:

Thank you so much again Rammie and please do keep reaching out,
Su

3 Likes
31

Hi @Rammie18, wow, what a difference a day makes, I am so glad that your questions were answered and you have more information to process.
Yes, please keep interacting on the forum and letting us know how you are doing and feeling. Take care.

2 Likes
32

Hi @Rammie18. I’m so glad you got some of the answers you were looking for. It really does make a difference. Please keep sharing. It’s been amazing how you have worked through things - even when things have been really difficult!

1 Like
33

Returning to work next week after 7 months…

Just taking on 2 of my 7 classes to start with… not anxious returning as I can’t wait to be Infront of kids doing what I do best… but not looking forward to the changes and unfortunately some of the people working there

2 Likes
34

Hi @Rammie18. Glad you are feeling so positive about returning to work. Kids definitely take your mind off things! Keep us updated on how it goes :blush:

2 Likes
35

I read the script of a conference held in the US regarding PV and covid in march, and though i know im not safe, my chances are the same as anyone elses, so the little anxiety i felt regarding that has pretty much gone. Im defo not going to be reckless but ill just keep doing what i am at the mo

@Nichola75

Dont think its me being super positive, maybe more so to actually have some interactions outside these 4 walls

1 Like
36

Hi Ian @63Minterne

Hope you are well…

I was wondering with you having PV did you get a shielding letter in March?

On the NHS website it says blood cancers are classed as clinically high risk and vulnerable, and although MPNs are classed as blood cancers wondering if the NHS recognised this or not?

Obviously anyone else who knows the answer to this question,
Any info would be amazing

Thanks

1 Like
37

Hi @Rammie18, from what was posted on this site the answer is for all blood cancers that some did, some didn’t and at different times.
What we did was to follow the medical experts, our medical teams and the blood cancer charities advice and common sense.
Take care and stay safe is the main thing and I know it is not easy now you are back at teaching.

1 Like
38

Hi @Rammie18 The government classified all patients with blood cancer (including people with MPNs) as extremely vulnerable to COVID-19 infection and advised them to shield. However, as always, people’s treatment teams should be able to offer more individualised advice around their levels of risk.
There’s a bit of info around MPNs and coronavirus on this page of our website - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/coronavirus-blood-cancer/
There’s also some information on this page of MPN Voice’s website - https://www.mpnvoice.org.uk/coronavirus-covid-19-advice-and-information/coronavirus_covid_19_advice_for_people_with_mpns.aspx
Hope this helps.

2 Likes
39

Amazing thank you @Alice_BloodCancerUK

2 Likes
40

Hi Rammie18,

Delighted to read your very positive response following your haematolgy consultation.It seems that a lot of your questions have been addressed.Don’t forget that we are still here to help,if we can.
In answer to your question about shielding, I did receive a shielding letter, but mine arrived sometime in July, all a bit late really.Until the letter arrived I had developed my own self isolating routine which worked very well and which I continued with after the letter came.Talking to my CNS, she confirmed that I was in the shielding group but allowed me some discretion in how I interpreted the advice.
So,here we go again,it all seems never ending.
Look after yourself and keep well,

Ian

2 Likes