Hi Erica,
I hope you are well? It will be 3 years at the end of this month I was diagnosed with Myelodysplastic syndrome (MDS) and Acute Myeloid Leukaemia. I am making the most of the second chance of life I was given by my bone marrow team and treatment. In the last year I’ve been to Portugal, The Lake District, New York and Santorini (August this year). I am back working as a nurse in nursing home. I decided to manage the risks regarding my compromised immune system, as I wanted to give something back and being a nurse has always been part of who I am. I only work a couple of 6 hour shifts a week but I love it and it’s good to keep my brain active. I currently have my bloods checked every three months and it’s always a bit anxiety provoking waiting for the results but I try and stay positive and make the most of the life I have. Thanks for asking x
Wow @Deborah26 what a good philosophy to make the most of your second chance of life and a joy to obviously have a job you love.
You also seem to have a good life balance.
Go for it and enjoy
Hello Erica. I have been stable with my diagnosis of Polycythaemia for 17 years by taking Hydroxycarbamide and Aspirin with very little side effects from the start so considered myself lucky until January this year when I had yet another different doctor and asked if the fact that I am JAK2 negative has any different outcome from being JAK2 positive as I feel my luck might be running a bit thin now. The doctor said what! you are JAK2 negative? when I said yes he looked back over my records and said you should have had tests to find out what is causing the high red cell count. He arranged another JAK2 test which also came back negative and he then told me to stop taking Hydroxy. and also the aspirin immediately as I hadn’t got Polycythaemia and the meds were not doing anything for me so I hadn’t got blood cancer and was probably suffering from Sleep Apnea and needed my GP to arrange the clinical test for that and to come back in 8 weeks. I came out of the hospital in disbelief to think I had been taking the meds all that time for nothing. Everyone was happy for me and felt reasonably normal for once. 8 weeks later oh dear thick blood and to be told my bloods had had a further test and I had got Polycythaemia Exon 12 and was back on the Hydroxycarbamide again. What a kick in the teeth that felt like. I cannot find out much about the Exon 12 rather than the JAK2 version, I don’t know if you have any information on this form of blood cancer or who I could turn to for information and the very worst thing is that from what I read it is hereditary and my eldest daughter has had unexplained pulmonary embolisms also my nephew has the same form of Polycythaemia as me I am terrified to think that my 3 daughters and of course my grandchildren may have it. I have always thought that it would only affect me and I could live with that. It is a nightmare as the lovely doctor seemed too busy to say anything further and offered to write a letter for me but I have yet to receive that. Sorry for the rant but it still seems unreal. Take care everyone. Regards Judith
Hi @Erica ,
It’s been a while and full of frustration. Had 2days of very low dose radiotherapy for mesenteric and paraaortic fnhl but shockingly it hasn’t worked. 3 masses inc the big one are now more active! Only 1 small one reduced in size. Noone expected that. They are doing another biopsy this week and I should get my chemo treatment plan 4th July. I have a new doc as old one moved to another hospital and she says definitely chemo next.
I do have concern they are biopsying the wrong lump ( ie one that wasn’t in r/t target area) - so it might not have the same makeup as the 3 that didn’t respond, might be the same as the small one that did so won’t tell them anything new ??. They have been very reluctant to biopsy the large one again ( last time when there was doubt as to type but insufficient sample to identify they said the r/t would work whatever i had!).
I do feel cheated. I submitted to r/t with its known long term effects all for nothing. The trade off was supposed to be getting my lymphoma under control so chemo not needed for years yet 
Doc says my prospects haven’t changed so i suppose i have to cling to that but it has shaken me. I am worried now the chemo won’t work.
Trying not to manifest bad luck but it’s hard to keep the thoughts from creeping in. Having my blind hubby relying on me i feel i have to keep up a positive front for his sake and its exhausting.
Been having some pain and tummy upset which doc said is due to lumps pressing on things so that hasn’t helped as sleep has been disrupted but meds have improved it 90% so thats good. Fatigue is definitely an issue now, got to nap in the afternoon!
Nothing to be done, just got to go with the flow and work on my mindset. Am annoyed though as might have to cancel a Northern Lights trip in November so will be out of pocket by the cost of my insurance ( doc says will still be having treatment in Nov but she will try to see if can fit around the trip though I’m not holding my breath). Got 4 other weekender trips taking hubby places in UK August and September that are likely to be cancelled if im not well enough to drive him which is a huge shame for him and more event ticket costs lost.
Sorry, for all the negativity, just needed somewhere private to vent.
Tomorrow is a new day and I’ll repair my armour.
Thanks for listening x
Oh @Judith unreal certainly is the word that also sprung to mind to me, I just do not know what to say, but also nightmare must cover your thoughts.
Your post was not what I would call a rant, but just honest as it is for you.
The Blood Cancer UK support line is there for you if you would like to talk to someone on 0808 2080 888.
Please let us know how you get on and I am thinking of you.
Look after yourself
Hi @K2K yes, it really sounds as if your life has been full of frustration.
Plus it sounds as if there are also lots of practicalities in your mix too.
I did not feel that your post was full of negativity.
What I did agree was that this forum is a place where you can say how it really is for you and I think that actually sometimes it helps me to just type out what is in my thoughts and feelings.
I also need a nap in the afternoon when I can.
Sometimes I need to re superglue my armour,but usually superglue my fingers to it too.
Perhaps write down al the issues you would like answers too at your next appointment.
Please let us know how you get on.
Look after and spoil yourselves xx
Oh wow. Yes, so much has happened but it seems like you are both in a really good place. It’s a really hard thing to say to people as it makes it so real so it really was a big step. What a great team you are! X
Hi @Willow,
I’ve not been on here for ages. Just seen your reference to my dog, Orlagh, she’s 2 & 1/2 yrs now! Where has all that time gone?
Here’s a pic of her playing guard dog at the front door of our new house.
I’ll try to take a better photo & upload it later. Funny how when they’re puppies you take loads of photos but as they get older fewer.
Oh @Corfu80 I cannot believe that Orlagh is 2 1/2 yrs old, ye, where does the time go.
You have also moved house too.
Yes, a picture of Orlagh from the front would be much appreciated !!
How are you doing?
Look after yourself and I hope you are happy in your new home.
Hi @Willow I have been thinking of you, how are you and your family doing? xxxxxx
I have just read your post and that is exactly how I felt when my husband finally told someone about his Chronic lymphocytic leukaemia (CLL) (like yours, after a year) Your words about being in it together and you not having to worry alone are so true. Thanks for sharing, I wish you both well.
How are you and your husband doing @Jill57?
Very well thanks Nichola, all good.
Been doing well thanks latest blood test showed platelets down to 424 so very pleased to reach that level just six months after starting treatment.
No major side affects so far from the Hydroxycarbamide but being very careful with the factor 50 sunscreen with all the sunshine we’ve been having.
Thats really good to hear @Mills 
Hi @Mills yes, it sounds as if you have been doing well.
Keep putting the Factor 50 on!!!
Look after yourself
Hi Erica, All ok here and thank you for asking. I’m not receiving the weekly feed much these days so I’m not so much engaged anymore.
Hi @jimmee great to hear from you.
I am sorry that you are not receiving the weekly feed as much these days, I will copy your post to Blood Cancer UK, in case there is a problem @Alice_BloodCancerUK
Keep posting and take lots of care to yourself
Good evening @Erica how are? It’s been awhile since I’ve been in the forum. I’m not doing too bad although fatigue is getting worse unfortunately. I’m trying not to have anymore time off work as they don’t really understand why I need time because I feel tired. I am a bit confused by the Haematology team though as they just seem to act on a whim when it comes to my treatment. The last meeting (June 2023) the registrar appeared so uninterested and rushed through the appointment. It’s now got to the point where I am considering asking for a referral to another hospital which I will need to do next year anyway as I’m moving away from the area.
Anyway take care All
Hi @Adw265 I always think that anyone that has not had fatigue does not know what it is like.
I think it is so important to stress to your employer that you need time off because of fatigue, not just tiredness.
You have a dilemma with your medical team haven’t you.
I sit there with my list of questions and do not move now till I have covered them all being ‘pleasantly assertive’!!
Please let us know what you decide.
If you would like to talk it through the Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself