Well it finally came through for 10th June, so still quite a wait to go. Would you say the fact that its so far away suggests they're not too worried about any urgency?
How was everyone else's first hematology appointment wait/timescale?
My wife is still feeling dizzy and such but I've been making sure she's drinking plenty of good quality water (aiming for 3L) and eating a good diet of mostly paleo including a daily smoothie of strawberries, blueberries, banana and avocado, so I am hoping this will help a little in the meanwhile. Any other suggestions would be welcomed.
Thank you again to all you amazing and kind people for helping us both feel a bit of relief from the stress of this situation.
Ben (and Barbara) .
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ItsJustMee
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If you live in the uk you can ask your doctor to send you anywhere in the country. I did. It might mean your wife will get seen quicker. Once you are in the system you can then get transferred back closer to home.
All news to me . I’m welsh living in England. I’m afraid I’m going to have to reluctantly support that decision. Wales does not charge for prescriptions and apparently the Welsh nhs is in financial trouble. Maybe it sounds harsh but if finance is a factor then paying prescription charges could be the answer.
Yep, free prescriptions and parking and a massive waiting list and some hospitals in special measures for years.. My family still live there and I have told my better half, if I become ill, take me back over the border...
How did you find Barnsley? Did they know about the condition and such? I'm not even sure how to go about getting her a sooner appointment elsewhere and what if we went elsewhere to find they're not as good as if we waited? Would you say 10th June is too long to wait?
I was told by my surgery to contact them if no appointment had been allocated within two weeks. After about 3 weeks my breathlessness was getting worse. My friends told me to get on the phone there and then and sort out an appointment. I was in London on a Friday day out at the time.
I phoned the surgery and queried the wait. I said I know I’m very ill. I will go anywhere in the country. I had an expensive holiday approaching. The secretary searched and came up with Sheffield in 2 weeks time. I accepted. On the Monday morning I was tidying up and saw a letter which I thought was confirming the appointment. I opened it only to discover that by the time the secretary went to book. the slot had gone but an appointment at Barnsley for that afternoon had been booked for me.
I had enough time to sort myself out and get to the train station.
I saw a Dr Ng. After various tests I was recalled for another blood test. I took a picture of the form. I was being tested for an MPN.
I will always be grateful to him and the team. He always said as I was leaving his room .
‘I’ll see you in2 weeks if there is no room then tell them to over book.’
He asked why I travelled to him and I explained the above. He said that I could transfer anytime I wanted now I was in the system I wouldn’t wait. He also told me that Barnsley liaise with other hospitals to discuss cases. So my treatment would be the same.
Now that you know you can travel out of your area. I would consider going back to the doctor and say you will travel anywhere.
Why wait and prolong the anguish if you can avoid it. I was getting really bad and with a holiday fast approaching I wanted to know if I wS going to make it. ( which through et I couldn’t go on)
Thank you Helen that's very nice of you to say. I wouldn't say her bloods are all over the place, just basically the red count and volume.
I'm hoping it will be worth the wait and we end up with a really good haem, because I'm not really sure what to expect with it only been a local hospital and not a big university hospital, although they do have 3 haems there.
The long wait to see a specialist is really aggravating. Happens here in the States too. As others suggested, it is worth travelling if you need to. just finding a hematologist is not enough. You need one who is experienced treating MPNs. Many are not and do not have the knowledge needed re. MPNs. Please do not be afraid to ask your doctor how many patients with MPNs he/she has treated. Check out the docs knowledge specific to these disorders. I did not find a hematologist close to me who truly is an MPN expert. What I did is travel to a well recognized hospital MPN Clinic and saw a hematologist there. This MPN-expert is now a "consultant" on my case. As needed, he advises me and my local treating hematologist regarding the PV treatment. I actually had to recently change my local hematologist as the old one removed himself from my case because he recognized he did not have the expertise to treat me. The new hematologist is fine working with a consultant, which is why I chose him. I found the MPN-expert doc on this list of patient-recommended physicians mpnforum.com/list-hem/ . All the best to you both.
I'm hopeful this haem has some knowledge about mpn purely based on the fact they mentioned the condition as the suspected cause when our gp wrote to them, but that's all we've really got to go on at this point.
Once we finally get to June and see them we will know much more I hope.
My thoughts are we might end up having to go to the city University hospital, but you never know I suppose until they're given the benefit of doubt.
Hi hope you are both keeping your peckers up! If as you say an mpn is suspected, which is a cancer, you really should be seen within two weeks by a haematologist, maybe go back to your GP and ask for a referral within that time. I hope it isn't an mpn.
I am here in the Southern part of Alabama and I believe it just takes time to see a specialist unless you go to a Emergency room and they get you into the Doctor's office that day. Some Doctors will do that. My platelets hit over one million during a blood test at one of our hospitals. My Oncology doctor saw me that day and started me on hydroxurea. Enough rambling. I hope all goes well with you. Blessings from Alabama.
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Finally got Ruxolinitib
First Haematologist appointment 
Finally start treatment 
