Hairy cell leukaemia

Hi Y'all. I'm totally cheesed off today. Saw the latest specialist ; this time for my inflated stomach. He , like the others, is saying I'm perfectly well and everything is normal. But he's fulfilling my GP's request for an endoscopyin 2 weeks.

It seems my haemotologist was wrong when he said I had an enlarged liver; it's always been normal. He thinks my enlarged stomach which pushes into other organs when I bend is probably caused by allergy/sensitivity to some food or other. I pointed out that I've had roughly one meal a day for two years. But as I haven't lost weight I think he presumes I'm lying.But as we ex-dieters know  if you reduce your calorie intake to a lower figure, your body adjusts and you don't lose, So you reduce the intake figure again to lose weight.

I pointed out I've already avoided various foods for 2 or 3 days at a time. First bread, then pastry,meat, vegetables. The Gp gave me some stuff to stop the stomach producing so much acid. Slight improvement; can eat slightly more. Say soup, 4hours later some meat and potatoes, then 4 hours later some lettuce. Have stopped eating chocolate as well and lost 4 lb in weight.

Nobody knows my current spleen length despite always being measured before. 

My GP told me a story that they teach at medical school. A man says he heard hoofbeats outside his window. He's convinced it's a unicorn but obviously it's a horse. (That explains why some GPs are diagnosing constipation and blood in the stools as just that  so senna pods and Preparation H)

So the next time I went I told her my version. A man goes to the police. He says he heard horses' hooves outside his window and he thinks it's Pegasus the mythical flying horse coming to kill him. They send him away branded as a loony. The next day he's found in his living room, dead. He's been trampled by a horse. The odd thing is he lived on the 18th floor of a block of flats!

If nothing else, it would be a great episode for the Twilight Zone.

"May the Lord take a liking to you - but not too soon!"

TTFN

Dear Frank and Yorik

So lovely to hear from you - not least the jokes Frank - I love the dead bird one. But you are also both having your own battles...so you a both so kind in cheering and supporting me, when you both have your own stuff to deal with too.

Frank -sorry your bloods have taken a dive and my 'hmmmms' were just as strong as yours when I was last told blood results go up and down. In 2010 my bloods steadily dropped each time I went, them plummeted at the turn of the year. In August this year they dipped again and I got the 'they go up and down message' which was not well received. 4 weeks ago they went down again with neuts to 2 (still a good count I know), so I'd been starting to get prepared. I went to the docs just over a week ago and found I had a chest infection, I felt wrung out and was sure I was heading towards chem. Even my GP gave me that smile with her head on one side and with a slight nod said let's see what the blood result says. Then on Thursday I found out they had gone up - no a little, a lot. My neuts are now 3.4! So I have to say, until its happened to me I didn't believe my bloods would go back up. I even had a chest infection too! So Frank - just maybe if your results go up, you too may start to believe. I'm back for more bloods on the 23rd, so lets see where it goes!

Yorik - you too have them scratching their heads then! I was once told my a young doctor whilst in hospital that its good to keep them challeneged - they don't become complacent or assumptive. I think they can be bored when its all a bit text book. I had to go for another follow up appt after my hip replacement and the person I met looked bored stiff with the speech he was spouting, he'd obviously done it so many times before...maybe even that day. I learned a lot about arthritis and told him so after a good 10 mins. But I asked if maybe we should focus on avascular necrosis, since that's what was wrong with me. I did chuckle inside and feel rather smug...he was way more interested then..albeit somewhat embarrassed too! Yorik, please keep pushing them and putting them right - and making sure they take your opinion on board. It is your body and your experience after all. I also remember a story about a duck my dad told me...

...it looks like duck, it quacks like a duck, it walkslike a duck, it feels like a duck, it has feathers like a duck, it smells like a duck...

...but its a man in a duck outfit. Use your instincts and stick to your guns!

Keep well both of you...and everyone else with HCL.

Wendy x

Hi Wendy,

Well it's a relief in a way to hear that you've been told blood levels can go up and down like a donkey's tail - I'd always been a great believer in trends, maybe I used to read too much into them. but over the last three years, I've hardly seen the same consultant twice... such a high turnover in Wigan, previously I had the same consultant, she diagnosed me back in 2003, and even sww my (now ex) wife a good few years earlier over something else.

So, all these new docs have a great tendency to say "Yes, your bloods are fine" but when pressed for the actual results, they leave room ofr some doubt.

I bet you're delighted your results have improved lately, good news for sure.

Oh, yesterday I took myself out for a simple canal walk, but decided to explore a detour.... turned out to be a straight choice between inching past a bull and cow in a farmyard, that were right on the footpath... so I went round the back... of the farm, not the bull... found a disused old path, then slipped flat on my back going down a few muddy wooden steps.... got up, rather bedraggled... pity there's no video of the event.... was ok, maybe the odd bruise in a day or two... then had to negotiate a very boggy field full of cowsh*t, had to climb over a fence and nearly slithered into the raging River Douglas ... ok, it's only about 10 feet wide but..... such a relief to eventually find a footbridge over the river, get back to the canal and safety. One thing for sure, I'm not going back there again!! Yes, I'm going to stick with safer organised walks in future. And yes, I should have more sense at my age....

Hi Frank

It's a pity there was no companion on your perilous trip. A film of your activities could have earnt you £200 on "You've Been Framed!" and a nomination for the Duke of Edinburgh Award!

I forgot to mention that  my GP had requested my referral to the stomach specialist as urgent and they were quite miffed about it. The doctor who rang to offer the appointment was very snappy and indignant and the specialist likewise. They think it's bound to be something trivial like a food allergy. My parting shot to the specialist was that I'd tried leaving various foods out of my diet for 2 or 3 days at a time with no effect so it looks like I'm stuck with it. He just said "Well, let's see what the endoscopy says."

I sometimes feel it's like the witch doctor in the jungle shaking a red rattle over his patient for half an hour then saying "There's no more I can do. I'm referring you to the witch doctor in the next village. He's got a BLUE rattle."

I take delight in their embarrassment when I say "Years ago, you treated my ulcer by coating my stomach lining because in those days you thought ulcers were caused by stomach acid. Like you told us to put butter on burns."

Then you get well-meaning people, who I tell I have very little energy to do housework etc, say  "Do some light exercise." If I had the energy to do exercise, I could do the housework! D'oh!

Oh well. Things usually happen for a reason. Maybe it's to stop me from doing something that I would later regret. Or just experiencing something that will help me empathise with someone in the future.

It's all part of Life's rich tapestry .

A quick joke. A tramp walked over to a businessman in his Rolls Royce and asked "Can you lend me 50p for a cup of tea?"   The man sneared at him and said "Neither a borrower or a lender be. William Shakespeare!"   The tramp sneared back and said " ----- off!  D H Lawrence!"

TTFN 

alas poor Yorick..... well, you mentioned The Bard.... and I love your DH Lawrence quote..... also applicable to the odd cocky supercilious arrogant know-it-all and not-have-a-clue medic that we sometimes bump into. Yes, I know about the Australian GP (I think) who had a 10 year battle to get those ostrich-like experts to open their eyes, look at the evidence, and eventually (grudgingly!!) admit that ulcers were caused by a bacteria, not stomach acid... think of the billions drug companies made flogging useless antacids over the years....

Yes, I thought if only a mate had been there to film my mud slide.... but then again, would I want the clip broadcast far and wide? It can take a long time for bruised dignity to recover....

Just had a mini pizza for lunch with some extra peppers I added... and it's a chicken stir fry ready meal tonight... you can only take healthy eating so far!

Hi Wendy,

It's good to hear from you. You have definitely had an unbelievably rough time, so it's easy to understand you not wanting to post. Hope that you had a great belated birthday party.

I too have had my hmmm moments with fluctuating blood counts, particularly platelets which have at times bounced from one extreme to the other. I also agree that you have to keep pushing the medical profession as, although I have been lucky to have a very good consultant, there have been times when I've felt like screaming with frustration at knowing exactly how I felt, but my input being ignored.

Hope that the bloods continue on the upward trend.

Chris

My GP has excelled herself. I'm not only having a gastroscopy on Friday but today I received an appointment for an ultrsound scan on my abdomen too in December. Yet all I asked for were some tests to see if I had any stomach infections. My nose, eyes and ears have been itching a lot lately but no visible signs. Although my feet are covered with orange dots that are turning into patches of brown. 

Because my stomach can't hold much food, I'd been having one small meal and topping up the calories with a bar of chocolate. Since I've quit the chocolate, I've lost half a stone. Had been 16 stone 2 for the last 2 years, now down to 15 stone 9. Also taking Vitamin A and D tablets from Asda (95% chalk) and cod liver oil capsules to stop my bones aching.

Anyway this is small fry compared with what you other guys and gals have been going through.

I'm getting a bit suspicious about that GCMAF place. Tried to make enquiries about the cost of their treatment but there's no email address or landline. Just a mobile phone number. Texted them but no reply.      And now a joke.

Joe is riding shotgun on the stagecoach. He's told "If you see a Comanche, shoot him!" Five minutes later Joe sees a Comanche in the distance. Joe says, "He's very little. Let's get nearer." Five minutes the Comanche is only a half a mile away. Joe says, "He still looks small. Let's get nearer." They drive on. Suddenly they pass some rocks and there is the Comanche stsnding in the road, large as life. "Shoot him!" says the driver.   "I can't shoot HIM, " says Joe. "I've known him since he was very little!"

hey yorick

great to hear things are moving at last. it must be a relief that someone is listening and taking action. hope friday goes well and they find out enough to sort or relieve the problems you are having. love the joke. sorry this is short but blackberry not behaving!

wendy x

hey chris

good to hear from you too! hope you are doing well. i really understand the screaming feeling. no matter how much you feel like giving up when being dismissed or ignored, i believe its worth persevering. my relationship with my consultant is getting much better, but its when you get multiple consultants involved (with differing opinions!) i could scream. i eventually told them - if one is telling me one thing and another with a different message what do they think they are achieving? since then only my main consultant sees me! we need to take a tip from yorick as if we keep persisting theyve got to listen in the end! i dont know how frank copes with his consultant changing all the time. have i got that right frank?

had bloods done again yesterday, all gone down but to wherew i was 6 weeks ago, so its not too bad. back in 9 weeks, so we are still keeping a close eye.

hi frank 

whats your latest? hope your okay and your not falling down anymore mountains!

nicky

thanks so much for the info its really given me some comfort and my consultant has agreed the anti hisa route next time too!

my blackberry on blink so hope this works!

or is it me?!

take care all

wendy x

Hi Wendy,

Glad to hear you're doing well, keep it up.. and keep those consultants on the run!

I guess it's easier to accept a different consultant every 6 months when things are going ok, which i was until a bit of a downturn with my latest test results. That's when I was told HCL results can vary dramatically from test to test, or even month to month... which I took with a large pinch of salt.

Anyway, I've got my next appointment in February, so they must think it's worth keeping an eye on - healthwise, I still feel ok - I was out all day yesterday on a solo walk - 2 buses, 5 trains, 2 reservoirs, 5 miles, 1 hot soup in a waterside cafe, but only time for a swift half of beer in a pub, had to jump an hourly bus back to train station from the moors. All went smoothly, amazingly. and I stayed upright, never went near any cows, and kept to proper paths!

Followed by a night in front of the TV for a bit of R&R.... whatever that is. Though with all the rubbish on the gogglebox, despite 57 channels or whatever, I soon switched my CD player on instead.

Keep taking the tablets... there's always a chance some of them will work...