I'm feeling a lot better... I think my platelet factory may have joined a union and have better pay and conditions!

[stillkicking]

I was a bit embarrassed by my last post as it was long and miserable, and I was tempted to see if it could be taken down again. It was an accurate reflection of how things were then, but I'm happy to report that things are a lot better at the moment so this post might bring things into balance!

When I last wrote, I had problems with an ear that was full of fluid following surgery that hadn't gone so well. The flood waters eventually dispersed and I have had my hearing back for about the last week. I can now play the ukulele, and enjoy it... and I can sometimes hear the telephone when it suits me!

Regarding platelets... these had been produced at an ever increasing rate and every until recently showed an increase, but in the last month or so there has been a gentle decline. I'm still over 1000, but only just. I don't know if it is psychological or physical (probably a mix of both), but this has been been accompanied by an improvement in how I feel generally, and in energy levels. My non-medical mind visualises the platelets being produced on a production line by a rather exploited unskilled group of workers wearing overalls and hair nets. Until recently, the poor things have had to work long hours with few breaks and little pay..., but I do wonder if they have joined a union and their conditions have improved somewhat. Their productivity is not quite so frantic, and they might now have tea breaks, but I'm feeling better so maybe the quality of what they produce has gone up!

My regular GP came back from leave and I was able to catch up with her recently. I was very pleased with how the consultation went in that I felt able to talk very candidly and freely, she gave me a great deal of time (missed her tea break), and was interested and helpful. She has written to the hospital to see if they can transfer me to a different haematologist. She also took on board my anxieties about HU and my preference to give interferon a try first if I have any chance of doing so.

Regards HU. I very, very nearly started (OK I am a coward!), but waited until my blood tests came through, and.... as these showed a decline in platelets I decided to hold off starting the pills. Another factor was that I have just started Blood pressure and cholesterol medication, and also wanted to give time to make sure that I was tolerating these OK, before taking the HU! Currently I am just on aspirin for the ET.

Anyway, that brings things fairly up to date. I wonder if others feel worse when platelets are increasing, and better when they have levelled off? Is this "all in the mind", or does something about the blood chemistry change when platelet production is frantic that affects mood and symptoms?

[eire]

That's just how are medical conditions go please don't ever worry about the miserable posts that reflected how you felt that day. I think most of us have good and bad times and it's great to be able to have a little moan on this forum. Brilliant news that you have such a great doc and things will only get better for you now going forward especially if you get a new haem that really understands your condition. Onwards and upwards and the sun is shining today!!!!!!

[mhos61]

I agree with 'eire' don't feel like you have to apologise for your last post. That's what this forum is for - to support you at these times.

I love your analogy of the platelet factory .....a kind of poor 'quality control thing' going on. They all need to be sacked!

It's good that you're feeling better, it shines through in your tone. Maybe having a GP who took time out to listen had a beneficial effect too.

Have a great day.

Mary x

[Mazcd Partner MPNVoice]

You don't need to apologize at all for your previous post, we all have ups and downs and it's good to be able to share them with other people who really do understand us, that's what we are all here for. Good to hear your platelets are coming down, that's good news and I like the image of your little platelet producers in their overalls and hairnets, wouldn't it be nice if you could give them a few days off every now and then. Best wishes, Maz

[harleydavidson]

Hi Stillkicking.

Never apologise for moaning to us, your extended family, that's what we are all here for.

So glad you are feeling a little better and that your ear has cleared, nothing worse that feeling like you're under water all the time.

Wishing you well.

Mel x

[heathermc]

Always best to let all your feelings out. You never know helps others to understand a range of feelings. My platelets are rising but at a slower rate are now 1124 . We're 1119 in Jan 2017. Still on aspirin and feeling ok. Consultant was happy with me at present. Onwards and upwards.

[stillkicking]

Thank you all for your kind thoughts, and for your understanding. It certainly has helped to be able to share some of the ups and downs of this condition with people who have been through it! One of the hardest things initially was the lonely time when I felt like I couldn't talk to anyone, even friends or family, and I know others of you have been through all of that. It is interesting seeing a pattern emerge after the diagnosis that is a bit like grief, and it does take time to take it all in and come to a point where you can shrug the shoulders and get on with life. I feel like I am more or less at that stage now!

I heard today that I have been transferred to another haematologist at the hospital who I will see for the first time at the end of August. I hope we are able to get on, I will do my best, I don't like being a grumpy old man especially as I know that the medical people are under a huge amount of stress at the hospital, it really has been desperately under resourced for years.

I managed to make a couple of good sized pots on the potters wheel in my studio today, and it is still magic to see a rough blob of raw clay being transformed into something lovely.

Onwards and Upwards!

[Rachelthepotter in reply to stillkicking]

It was good to see your post: I too am hoping to get into my studio for a bit today and see if I can enjoy throwing some pots. One if the things that tipped me into feeling- I have to do something about the fatigue- was that I had had to leave the 2 week pottery course in Wales I had been booked on , and really looking forward to, because I just couldn't cope, emotionally or physically. Small difficulties got to me and became insurmountable. No fun at all.

I took up pottery when I retired a while back and I love it. One of the sadnesses of having a shortened life expectancy is that I may not have enough time to get good enough at throwing, which is what I like most. So, today, I'll do a bit.

[stillkicking in reply to Rachelthepotter]

Hi Rachel,

"So, today, I'll do a bit"! Is really a wonderful motto and something to aspire to! I will actually write it on a piece of card and put it on my studio wall above my potter's wheel.

I was moved when reading your comment, and so sorry that you had to leave the course in Wales. That was at the International Ceramics Festival at Aberystwyth if I remember rightly?

Sometimes I look at daisies and other humble flowers that have grown on the path, in the lawn, and in unlikely places, and admire their fragile beauty; they bravely put on a show of flowers, but because of their environment, these are always like exquisite miniature versions of the ones that their showy cousins put out in the flower border. I love and treasure these tiny things.

I had a shoulder injury nearly 2 years ago that, even after an operation, still has had a big impact on my potting. A friend, who really didn't understand why I was so "down" about things suggested that it didn't matter if I couldn't throw on the wheel any more, I could always slip cast, hand build or use press moulds! It was a bit like telling someone who loved playing the violin that they should switch to another instrument, such as the bongo drums! I've nothing against bongo drums, or hand building with clay, but they are really not "me"!

Sadly, people who don't work on the wheel, really don't understand the joy/frustration, and challenge of it!

I eventually managed to throw again, but not in the weights that I used to, or for the hours! I remember one point where I found I could reliably manage 750 grams of clay again. This is only a small amount, but it was wonderful, because I found I could make lovely jugs and bowls with that weight of clay. There is something about little jugs that I really like. The best ones have the life and cheerfulness of little birds. Jugs also are very interesting, as they can be tall and thin, small and squat, faceted, twisted, have spouts, refined pouring lips, and all manner of handles. They can be remarkably human in form, or cool and sophisticated like modern architecture. And, in addition to all these endless possibilities, they can also be useful, which is also another of the great joys of making pots... making something useful!

I do feel sad when I think what "might have been", but there is still a very real pleasure and excitement to be found in the "moment" of centring some clay, and transforming it into a jug, goblet, or bowl.

Some months ago, a little boy came into my studio with his two older sisters, and watched me throw a small pot, the sisters took no notice of what I was doing, but the little boy started jumping up and down for joy, "look", he said... "It is magic!"

May we both continue to feel the magic of working on the wheel!

Kind thoughts to you. I'll now go and write "So, today, I'll do a bit!" on some card, put it on my studio wall, and... make a pot or two!