I was at the haematology day ward yesterday and I got a phone call to say that they are happy with the numbers and are going to leave me off the hydroxycarbamide for another three weeks. I then return for another blood test and see where we go from there.
I was due to see my consultant next wednesday to discuss options but that has now been cancelled. I have yet to meet the consultant that I am under. At my original outpatients appointment there was another consultant covering for him, I was told I likely had polycythemia vera but as they had to send the Jak2 tests away it would be three months before they would have a result. In Decemember I returned to outpatients and again saw a different consultant covering for the one I am under. I was given the diagnosis of polycytmemia vera and started on hydroxycarbamide. I was the put under the care of the haematology dayward. I have had regular visits since, I go in the morning they take bloods, a consultant looks at results and a cancer nurse calls and gives them to me. My dose of hydroxycarbamide was increased several times.
I am delighted to be given a break from the medication but I am unclear as to what the next steps will be. I am going back in three weeks for bloods again but I am a bit concerned as I am going on holidays in four and a half weeks. I do not know if I will be put on new treatment and if I am how will it affect me. I know its good news but I like to have a plan or at least an idea . Well done if you managed to read all of my ramblings. Liz59
@Liz59 that’s fabulous! Well done. I’m sure you’re feeling all sorts of emotions, relief for the current situation but a bit of trepidation about what might follow. Enjoy the moment 
That’s really good news. However, I completely understand you wanting a plan. Just write down all of those questions ready for your next appointment. Have you got a clinical nurse specialist you could call if you wanted to ask questions?
That is good news, @Liz59! I do hope you enjoy the break from hydroxyurea. That’s a fantasy of mine, not to need chemotherapy anymore!
I wonder what is happening with your Polycythaemia vera (PV) diagnosis, it sounds like different consultants are advising you differently? To allay any worries I’d be tempted to get clarification about what it is you’re living with.
Perhaps to make sure any new treatments won’t clash with your holiday plans you could ask your specialists to clarify sooner rather than later which treatments are upcoming and let them know you’ve got your holiday booked.
Oh and I wanted to ask how you’re doing after that fall? Have your injuries healed up okay? It sounded pretty rough! I’ve been noticing my own injuries taking longer to heal with my Polycythaemia vera (PV) so I hope yours are doing well.
Now to look forward to your holiday and planning your activities! I love getting ready for holidays, as you can probably tell 
Hi @Liz59 yes, it is good news but I can understand you wanting continuity and a plan.
Unfortunately it is something we often don’t seem to have.
Perhaps contact your specialist nurse and explain that you are going on holiday in four and a half weeks.
Yes, have all your your questions written down ready too.
Please do let us know how you get on. I always celebrate every bit of good news
@Liz59 Can I ask how long you were on hydroxycarbamide for?
That’s great news to be given a break. Esp if you were experiencing and side effects.
Please do keep us posted on any noticeable changes
Pollyvera you hit the nail on the head, relief and joy but uncertantinty for the future.
Nicola Yes it is good news. No I do not have an assigned nurse but I am thinking of ringing the dayward to see if they can find out for me. They probably sick of my phone calls by now.
Duncan yes its great to be getting a break from the chemo. It’s not unfortunately forever as I do have a diagnosis of Polycythaemia vera (PV). Thank you for your good wishes. I had the second root canal treatment today for the two front teeth that got damaged in the fall. I am still having physio for the wrist and fingers, improving but slower than I hoped… Yes I am looking forward to my holiday, I am so lucky as a result of a family member having to drop out {due to change of job} and little to no savings to be made by cancelling. I get to go on a mediteranean cruise for free. I am very excited I have never been on a cruise before.
Erica yes I am celebrating. Unclear as no plan, hoping the cancer nurses on the day ward may be able to find out some information for me.Good idea to write things down as I get flustered and don’t like to bother them.
Rammie 18 yes I was having side effects to the hydrea. Its great to be having a break. I have been on hydrea since December. I started at 500mg daily, that was increased to 500mg one day alternating with 1000mg , then that was increased to 1000mg six days a week and 500mg one day.
I just want to say thank you so much for all of your support and understanding. It means so very much and is appreciated
Oh my, you’re really had a lot of health stuff to be dealing with! I love how you’re taking it in your stride, as it were, and going on holiday anyway! And a cruise, how lovely! I accidentally went on a mini cruise many years ago to Amsterdam and back and had such a lovely time gazing out to sea and stuffing my face on the “ferry” buffets. It’s still the biggest ship I’ve been on. Wish I’d had binoculars with me, and a warmer hat! Not quite the Mediterranean though, I hope it’s nice and bright and restful for you 
Duncan I am looking forward to the cruise, getting to see so many places I would never have had the opportunity to visit and also as you say the buffets. I have no doubt I will over indulge but you have to when on holiday, that’s a rule right.
PollyVera, Nichola75,Duncan,Erica, Rammie18. I rang and spoke to one of the cancer nurses on monday. She said there was a meeting that afternoon and she would talk to the consultant and ring me back on Tuesday. I have not gotten a phone call back, so I have decided to just enjoy the few weeks of a break from treatment, my energy levels are so much better and I cannot believe how much clearer my brain is. Still having problems with those pesky mouth ulcers. Hoping they will clear with the break. I am now able to follow a pattern again and I am crocheting cardigans for my two grandaughters and sewing them dresses for their holiday. I even managed to get some gardening done. Back to the dayward on the third of May , hopefully will find out then what happens next. Best wishes Liz59.
Oh @Liz59 by the tone in your post you definitely seem to have made the decision that is right for you.
Really look after yourself and please do keep posting how you are doing.
I’m really glad you are back doing the things you enjoy. It’s really good to hear x
Erica and Nichola75 thank you for your kindness and support.