When I last posted, I was heading off with 2 HU bombs into enemy territory after my fierce monocle wearing Haemo Wallah upped the anti on the platelet factories. In truth my little biplane has struggled to carry this new load. I was stricken with a very sore mouth on about day 3 after the increase, and the soreness was soon artistically decorated by painful mouth ulcers on and under the tongue, and inside my lower lip and cheeks that I have sported for over a week now. I also became more tired than before, and have felt like I was struggling through mud and grime on the Western Front, rather than gambolling above it in the clouds and open air.
I have found that rinsing the mouth with cold salt water helps, and I also keep up the frequent drinks of cool water too.
Out of the blue a few afternoon's ago, I received a phone call from the hospital rheumatology department offering me a consultation just after nine in the morning a couple of days hence. I had been seen by that department back in 2015, and I had assumed I had fallen off their books for some reason. Whilst I think that the Behcet's syndrome that I was suspected to have had when I saw them back then was really not the case, I took up the offer of a consultation, if only to close that chapter of my medical history!
The young Asian registrar that had been assigned to deal with me turned out to be charming, very bright, and possessed a sense of humour and warmth. I was impressed by the fact that she had already read my notes and had brought herself up to date about my ET. She was very understanding about the ulcers and has written me out a prescription of something to try (when the pharmacist gets it in). I have been troubled by a sore big toe since last November, and she was able to confirm that it was in fact possible that it is gout, and she had a good look at the offending digit, gave me good advice about it, and has put me on quite a long course of anti inflammatory medication as well as Omeprazole to protect the stomach as she knows I have to have the daily aspirin.
I walked into that consultation fearing it would be a waste of time, and came out feeling happy, listened to, supported, and more confident.
I must sign off now, but Cheers to Everyone!
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stillkicking
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How gratifying to leave a consultation a happy bunny , Sometimes we need a lift and a caring medic that shows interest in our whole wellbeing makes all the difference , long may it continue ..
It makes a difference to be valued as a person rather than just being seen as an aberration that needs to be corrected! A warm smile and a sense of humour helps too, it was wonderful to walk out of the consulting rooms with a spring in my step!
I know we have all struggled with our different ailments of MPN but you have a wonderful gift for making us laugh with the way you are coping , thanks for your humour and for sharing it with us . June
We are all different and have various coping methods to deal with our condition.
I think that having a supportive and caring medical team that puts you at ease and is prepared to spend time treating and speaking to you as an individual, addressing your specific concerns, rather than as just another patient is crucial.
The importance of being at ease during a consultation and feeling able to discuss even the most minor of concerns can only help an individual to understand and cope with what can be a stressful condition.
Being put at ease is so very important, I think that is about trust and being believed. Sadly I think many of us have also experienced consultations where these essentials are absent.
So Biggles will fly again. Hope all the meds kick in very quickly and you feel right as rain very soon. It’s just great to have an on the ball, understanding medic. A good tonic in itself.
Biggles has been out on another raid or two in his battered biplane since penning this report. The motor is still a little rough and I can't quite climb to much of an altitude as yet, but I sampled some magic local anaesthetic mouthwash stuff that the delightful medic prescribed, and it does provide some relief.
The lady in question deserves being mentioned in dispatches! Too often those in charge don't take a lot of care over the troops at the front. Hope the medicines work for you!
I would have liked to have offered her a medal for bravely examining my feet at 9.30am!
I do hope the medicines work too, it has been frustrating having foot problems and mouth ulcers at the same time, not major things in the grand scheme of things, but they do take some of the fun out of life.
At least the Omeprazole will keep problems from the middle regions at bay! I was wondering if the brave doctor had to wear an anti-radiation suit for the examination of your toe!!!
Ouch, sorry to hear you have been suffering, it's those kind of things that wear us down when they don't clear up quickly. Are the mouth ulcers supposed to clear up once you've adjusted to the increased dose or will you want to try something different if they don't go away? I can't imagine you'd want to live with mouth ulcers on a permanent basis if there is an alternative! It seems that you treat one thing that causes something else that then needs a different treatment, I often wonder where it ends when that happens having had side effects from other medications in the past. I know that mud feeling I hope your toe is improving and you're able to gambol around again soon
I'm still looking forward to meeting up in a few weeks, I was quite down a couple of weeks ago when I found out there had been a meeting in Wellington in March organised by some NZ members of the MPN Australia & NZ Myeloproliferative Neoplasm Support Community on Facebook, and I'd missed knowing about it by about 2 weeks I think there are a couple of people on here that are also on that Facebook group but I'm pretty sure nobody mentioned it on here. They had Dr Ruben Mesa an MPN specialist (Mayo Clinic and now at University of Texas cancer centre) giving a talk about Living with MPNs, but it was also a social meet up for people with MPNs. It was so frustrating and disheartening to know that I'd missed out on meeting other people in NZ (some from Wellington) when it was on my doorstep and I hadn't even known, it took me few days to get my head back in a positive space again. I will be asking my haematologist when I see him on June 1st if he know about it, as I think they could be letting their patients know when these events are happening if they do.
Oh well I have to go as I have some work to catch up on today, it's raining so I don't feel so bad about it, and I got out for my yoga/pilates/workout class yesterday and also cycled about 35km (on an electric bike so cheating slightly). We got wet coming back as it started raining earlier than expected, but I was lucky enough to have a Thai aromatherapy massage booked for yesterday evening which was my Xmas present from my daughter and son, which warmed me back up and relaxed me nicely
Take care and I really hope things are improving for you,
A grey and drippy day here with rain, rain.. and more rain. I am considering building an ark, but haven't as yet received instructions from on high to proceed with it!. We have two cats, and Laura and I make another two, so that is a useful start in gathering animals two by two!
Very frustrating for you to have missed the MPN talk in Wellington. I had not heard any whispers about it myself either. I recently had a chat to someone at our local library who has Myeloma, and the haematology/oncology department had put him in contact with support groups where he met others with the same disease, and he had even attended a conference. He was quite surprised that I had not had a similar experience. It would seem that MPNs in NZ have slipped below the radar to some extent.
The mouth ulcer thing is something that I may just have to live with as I understand that there don't seem to be many alternatives on offer in NZ apart from hydroxyurea and anagrelide to lower platelet levels. I really wanted to try pegylated interferon before hydroxyurea, but it isn't funded here for ET. I am hoping that my body will get used to the HU stuff and the mouth ulcers will become less of a problem. I haven't yet let the haematology people know about this crop of ulcers, but will write them a letter about it so that it is on record somewhere.
Happily, the ulcers are considerably less painful today so they must be healing and I am starting to feel foolish for having complained about it in the first place, however.... I think it is helpful on this forum to be as honest as possible about the ups and downs of the various medications we are on.
The Thai aromatherapy massage sounds rather lovely, it is wonderful how something like that can make life seem so much better.
Looking forward to catching up with you when you are down this way,
sorry to hear about this latest development. I’m sure the mouth ulcers will begin to heal as your body adjusts to the increase in medication.
Isn’t it lovely when we have a positive consultation? I’m sure it has a beneficial effect on our health conditions too. Hope the big toe improves soon. Did your haematologist prescribe allopurinol alongside the hydrea?
Good to hear from you. Mouth ulcers, though still evident to some extent, are much better today! This is a boost to the morale. I have been on allopurinol since December, sometime before starting the hydroxy as the toe problems began last November if I remember correctly. I had been prescribed an anti inflammatory drug at the start of the allopurinol, but only a short course. The rheumatologist I saw last week said that they start their gout patients on 3 months of the anti inflammatory treatment along with the allopurinol, and added that it can take up to a year to clear the symptoms. It may be that we didn't treat things aggressively enough at the beginning. Anyway, it is good to be having another go at it.
I hope you are okay and not suffering too much, you've been very quiet this last month? I am still coming down to Queenstown this weekend, are you up to meeting up on Sunday if I come over to Dunedin with my husband and son?
Happy to report that there is still life in these old bones, and I am delighted that we may actually have the chance to meet up this Sunday! It will be the first time I've met anyone else from the MPN family, so that is something to celebrate!
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I hope your toe is improving and you're able to gambol around again soon 
I think there are a couple of people on here that are also on that Facebook group but I'm pretty sure nobody mentioned it on here. They had Dr Ruben Mesa an MPN specialist (Mayo Clinic and now at University of Texas cancer centre) giving a talk about Living with MPNs, but it was also a social meet up for people with MPNs. It was so frustrating and disheartening to know that I'd missed out on meeting other people in NZ (some from Wellington) when it was on my doorstep and I hadn't even known, it took me few days to get my head back in a positive space again. I will be asking my haematologist when I see him on June 1st if he know about it, as I think they could be letting their patients know when these events are happening if they do.
Mouth ulcers and hydroxy 
Suggestions to help manage fatigue
Energy costs and inflation going through the roof and now the NHS finally gone to pot!!
A model of good MPN care
