The first 7 months after diagnosis. Feeling better in myself.

[stillkicking]

Things are going better for me now then they were earlier in the year. I have my bad days and struggle with low energy levels, but on average I have a bit more fight in me than I did, and am not feeling so "burdened" with the knowledge that something is fundamentally wrong with my blood!

For the first 3 or 4 months after I was diagnosed with having ET, I had an awareness of the thing most of the time - I guess that I was a bit obsessed by it. Quite a lot of the initial "obsession" was the shock of the diagnosis and the need to understand the condition and assimilate that knowledge. Not having much prior knowledge of the finer points of how blood works or how genes function, there was a lot to take in! I also did not feel I was getting the support i needed from the health system. Looking back, I think that was mostly the case, but I can see that I was very fragile and easily hurt so it was easy to upset me!

After 4 months, I noticed a change in me. I no longer was so stressed by the ET thing, but was more at peace in myself. I guess it is a bit like grief, the process takes time, and we deal with it in our own way and at our own pace.

I had a very good consultation with my GP when I was at a rather low and sad point, and she kindly went without her coffee break and gave me a great deal more than my allotted 15 minutes. She wrote a letter on my behalf to the hospital and got me switched to a different haematologist. Knowing how busy the medical people are I was a little embarrassed by the care and long consultation that the new haematologist gave me (probably well over an hour). They also arranged for me to meet a specialist nurse that I can contact if I need to talk to someone in between specialist appointments.

I had been seriously worried about the prospect of having to take HU (I have mouth ulcers most of the time already and fair and fragile skin), and was able to have a good discussion with the haematologist about this, and also I was able to ask if alternatives such as peg interferon were available. Unfortunately we cannot get this as it isn't funded for MPNs in New Zealand. The haematologist said that they had been trying for years to get it approved, but couldn't get it, even for pregnant women. It is available for people with Hep C... (that doesn't tempt me to share a needle!).

I also asked about my diagnosis. I am ET JAK2 negative, and also negative to CALR. Unfortunately the MPL mutation test is not done here as it is deemed "too expensive" so it is not known if I am triple negative.

My platelet counts got over 1000 a few months back, but plateaued, and have dropped slightly to just under 1000 at the last count. I had this month's blood test today, so will await with interest to see if it is sliding down further or creeping back up again.

Anyway, I must finish this now as is time for bed, but thought I would give an update. I hope this helps someone else. I certainly gained a lot of help from quietly reading many of the posts on this forum in those first difficult months after diagnosis.

[Dianne-Guisborough]

Hi

What a fab post and one I and I suspect many pepes in our"special club" can totally relate to even to having a lovely understanding GP and haematologist .

I know what you mean when you described it initially as being a bit of an obsession. What with hospital visits, blood tests and venesections plus reading about our rare condition it does seem to be "there" all of the time .

Like you, I am 11months on from diagnosis and both me and family have gradually got our heads round it all and I have personally made positive healthy changes too, like losing a few excess pounds , keeping well hydrated and taking regular exercise as and when I ferl up to it . Above all I have learned to pace myself it a little better than pre-diagnosis!

I agree whole heartedly that reading many of the posts and replies on hete really helps .

Hope you keep well

E-Hugs across the miles from the UK to NZ

Love Dianne

xxxx

[stillkicking in reply to Dianne-Guisborough]

Hi Dianne,

Thank you for your kind and thoughtful comment. The "positive healthy changes" are certainly worth doing, and I do try to go for a 20 - 30 minute walk several days a week which does help. Congratulations on losing a bit of weight, I would like to, as I gradually put some on over the last year or so as I had not been as active as I once was.

E-hugs happily accepted and warmly reciprocated!

Peter

[mhos61]

Hi stillkicking,

Thanks for the positive update. So glad to know that you have been listened to by the medical professionals. I really think that is half the battle. Also good to know that you now have access to a specialist nurse too.

It is such a shame you can't have the MPL test though. I don't know how you feel about this, I must admit I'd feel a bit cheated.

I too read many of the posts on here in the early days of my diagnosis and was truly enlightened.

Hope things continue to progress in a positive way for you

Mary x

[stillkicking in reply to mhos61]

Hi Mary,

Lovely to hear from you. Our health system is in some difficulty over here and I am not surprised to find some things not available due to cost. Currently there are people waiting for many months or years for treatment for far more debilitating and serious conditions than I have, so I feel fortunate to have received the help that I have. I am very thankful for having being diagnosed when I was, and for the daily aspirin that I now take as this may well have saved me from stroke or worse.

If it had been available, I would like to have had the MPL test, and, if that was negative, to have tried to have found out what other genes were involved. I have had a number of health issues most of my life and do wonder if they and the ET are connected in some way. Whilst the knowledge would probably make little difference as far as management of ET goes, especially with the limited options we have here, it would have been nice to have been able to make sense of things.

All the very best,

Peter xx

[Bridie123]

Hi Peter, what a lovely post. So pleased for you. May it continue.

Regards Carole X

[stillkicking in reply to Bridie123]

Thanks so much for your kind thoughts Carol x

[heathermc]

Thanks it helps. I can relate to your feelings. I'm going back through my negative phase at present. Using mindfulness and mediation to deal with it. Part of the process. I have et and calr positive.

I have decided to take early retirement in 8 months then do voluntary work. Need my peace of mind back. My platelets are around the 1100 mark . Been like that for a year and take aspirin at present. It is good to read other people's stories. Thank you.

[stillkicking in reply to heathermc]

Thank you Heather it is good to hear from you. It is really hard being confronted with the physical and mental limitations of this condition, and I do sympathize with you. I am self employed and work from home. I do try to keep going as much as I can even when not feeling well, but I am far less productive than I used to be despite my best efforts. I know I would find it impossible to hold down a job with regular hours working for someone else. I do hope you are able to make a smooth transition to retirement from your job. Doing voluntary work afterwards sounds like a very good plan. Kind thoughts, Peter

[Kerri2]

Good for you! I have been diagnose for 2 yrs now and doing well. Just decided I"m not going to let this define my life. Et is the better of the MPNS to have and I am thankful. It is to easy to blame everything on the HU or ET.

[stillkicking in reply to Kerri2]

Hi Kerri,

Good to hear from you and it is great to hear that you are doing well. I suspect that most of us go through an emotional and difficult time after diagnosis, and in time we climb out of this. We in charge! Finding things to be thankful for helps too. I do know what you mean about "ET being the better of the MPNs", but I also think that people experience it in a wide variety of ways that is dependant on the type of mutation involved and other unique aspects of their physical constitution. Thus, whilst some notice few symptoms, others have a terribly difficult time of it, have to give up working, and fatigue, pain, and other symptoms conspire to rob them of the opportunity to maintain much of a social life. For them, ET is not "better". The cards we are dealt with this are individual rather than equal, but it is worth putting up a fight and taking charge of what we can!

Best wishes, Peter