Hi dear Carol, my first thought when you said doing ballet, was dont ever do swan lake you'll probably fall in, 

Sorry couldn't help it it just popped into my head. 

Glad you met old friends, shame about talking about our Queen was very short after all she did in 70 +years. 

Love Billy xxxx 

Hi Keith, before Norman's diagnosis I was  volunteering for a mental health Trust and this was one of the things I wanted to do.  So my friend works for them and they've just restructured and this is one of the positions on offer, so filling in a form now, then see if I'm accepted.  How are things going with you?  Carol. 

Ha ha Billy, but you're right I'd probably drown!!  I've actually bought pink ballet shoes, very excited, also looked up 1st to fifth position so I don't look stupid, ballet is very good for stature and strength, I ran a ballet school in the village, every year we had a show in the village hall, one year Faye was the lead as Violet, in the flower story, she broke her arm two weeks before but I still made her dance, it's still mentioned now and she's fifty next year, not a forgiving lot are grown up children!  Both were offered places at the Royal Ballet school but both broke their arms roller skating and that was it as they were no longer straight.  It's a hard world!!  Anyway I've just popped next door to print off my registration form, no good deed goes unpunished, Norman had left the garage door at half mast and I walked straight into it as it was at my height, my head hurts and I'm now drinking wine and taking pain killers, he's now mowing the lawn and stopped whilst I hopped over it as he said I'd probably get mown down, they know me well.  Xx

We're at the stage where a lot of people would give their right arm to be, emerging from a stage 3 cancer diagnosis and all the treatment that involves, to the light at the end of that very dark tunnel we found ourselves in over the last year. We're one of the damn lucky ones.

Due to the aggressiveness and the extensive localised spread she had at diagnosis, we have been told on a number of occasions, her one has a high reoccurrence rate within the first 2 years, so it's currently a waiting game of sorts. Surprisingly, and something i thought all cancer patients got, she doesn't get any more scans at all. Only 1 mammogram per year.

An issue that cropped up before her very last chemo treatment a few months ago was a high liver count. They put that last one off for a week or 2 to give her liver a rest, and to re test. They re tested it a fortnight later and it was still high, but one of the counts was going down, so they decided to press ahead with the last chemo. Anyway, that liver count has never went down, and if anything, it went up again slightly even after finishing chemo. So the oncologist suggested she needed to see a liver specialist to find out exactly what was going on. I won't lie, the thought of liver mets was the elephant in the room no one spoke about, but an ultrasound came back clear, so they needed to look into it with a pair of trained eyes.

They messed her referral to the liver hospital up and it ended up somewhere else, so they chased it up and re referred her. She had that appointment two weeks ago and it turns out she has an autoimmune thing going on. She has been diagnosed with Primary Biliary Cholangitis [PBC]. It's where the body attacks the vessels where the bile goes through your liver, and damages them. Which in turn means the bile damages the liver. It's a progressive thing. If the medication doesn't slow it down, we're looking at 10-15 years before she would need a transplant. If the medication works, people can live normal lives with it.

In isolation, a terrible diagnosis for anyone, but all things considered, it could have been a lot worse, like secondary mets. Basically, the best out of a bad bunch news wise. They have no idea if the sheer amount of blood tests just picked it up or if it was caused by the chemo. They don't think it was caused by the chemo, but yeah, they're simply not sure.

It's a tough road to travel Keith and you never know what is happening with the treatments.  But a positive outlook by what you are saying.  How are you coping?  We do get over looked so take care of yourself as well.  Lockdown was hard as we didn't see our family and we knew time was running out for us.  Take care, Carol 

So sorry to hear this. Something scarily similar has happened in my family (someone lot younger than your wife). Don't think we're going to have the transplant option given reaction to one of the second-line medications. Maxed out on immunosuppressants. Expect your wife has had to give up alchohol and anything that stresses the liver now too - maybe depends what meds they put her on. Seems there is always a "price". But we are grateful for every day. Every good day is a WIN. Good luck!

Carol, I hope your head is okay. I love, love, love your having some pink ballet slippers. Definitely jealous as I don't think my feet would look good in them anymore. No wonder you've got such a good figure with all that ballet work over the years. I do have a few ballet DVDs and books in the house still, but I no longer trust myself not to fall over. Can't bear to part with them though. I'll sit and watch them one day... and dream. Actually, some of the basic exercises ARE do-able in bear feet. The basic positions, breathing etc. You've definitely given me some ideasJust nothing en pointe. Are you thinking of going back en pointe? Oh it sounds such fun Carol. Such wonderful, wonderful fun. You made my day, you know. Thank you. Love Rose xx 

Believe it or not, mentally, i have been fine since I read your thread as i previously stated. Before reading your thread, i was finding even the most basic day-to-day things difficult. I had so much pent-up anger, stress and frustrations as I thought I was being damn selfish for even thinking about my woes. You showed me i wasn't alone in thinking and feeling what i was. So yeah, it's down to you. hahaha

I think that's why these types of threads and the people within those threads are as important to this community as any threads detailing someone's personal journey going through the disease themselves. Both are valuable sources of information for both sides of the journey. For good or bad, a lot of people up sticks once their journey ends and with their departure from the forums, a wealth of personal experience goes with them.

[@RoseStarBlue]‍  Sorry to hear about your relative. Some autoimmune conditions can be devastating in their own right. The wife is allowed to drink alcohol. Which surprised both of us. In moderation, of course. She isn't a heavy drinker anyway. I think what she has to be careful with are fatty foods. The more fat you eat, the more bile you produce. I suppose that's similar to people with gallbladder issues.

That is lucky ProfBaw. Then your wife likely hasn't got (I really hope she hasn' got) chronic nausea or itch and will be on a first-line rather than second-line treatment. I hope the effects of this condition stay minimal. Btw, I agree with everything you say about information in public threads being a valuable source of information. Reading a lot of different threads – especially Carol's – has helped me so much, especially in terms of building resilience. 

She currently has a bad itch. But they're not sure if it's the PBC or the tamoxifen. Tamoxifen can cause itching too. So she is currently off that drug for the next 6 weeks to see if it's a drug induced itch. Nothing is straightforward, it seems. She has no nausea. She has been told it's very early stage PBC. The damage is currently minimal. However, with PBC the itching can appear at any time regardless of severity.

Keith