Morning Caz.

Myelin sheath eh? I thought you were going to talk about condoms for a minute.

Yet another new face on the team that I saw yesterday, and one that is less than inspiring. Information given was not accurate and very misleading. The main force of my enquiries as I stated earlier was the nerve endings, particularly in my left hand. Buttons and shoe laces have been a long term problem, but recently I have been experiencing problems in holding a fork, so much so that I am now reduced to using just my right hand when eating, there is no strength there anymore. This is worrying, as where does it end? I was told that a few weeks break from chemo would sort the problem, but i know this to be wrong. Whilst I was having a break from chemo recently, the problem got worse, and I have been mentioning it every time I go. This has been ignored.

Anyway the expected weight gain did not happen, i did put on a further 600 grams, so I suppose that is something, but I had hoped for more, not that that in itself is of importance.

Enjoy your day off

Evening Dougie.   No, I wasn't talking about condoms, although they do have something in common with myelin sheath, in both cases their purpose is protection.  

How frustrating it must be that you've got someone on your medical team who gets things wrong!  That's exactly what you don't need right now but I don't need to tell you that.  

I took my mum to casualty last winter when she got a nasty rash and I explained to the triage nurse that she had liver cancer.  When we saw the doctor he asked who'd told us she had cancer.  Because according to the records the biopsy result showed it was non malignant and he even suggested we hadn't been back for a follow up.  This was a year after her diagnosis for goodness sake.  I was convinced he'd got the wrong records with other things he said too and I was glad to get out to be honest as it was confusing and a total waste of time.

My mum then started telling everyone she didn't have cancer, so I took her back to see her GP for an explanation.  He couldn't understand why we'd been told that and agreed it was very disconcerting.  So I can understand how you must be feeling but don't be put off though and don't lose confidence in your team. Most doctors are brilliant. It's just the odd one who doesn't seem to fit in at all.

My bed time now and I can rest happily as I've just had a message from my brother who's on holiday in the Caribbean, saying they've seen no sign of any hurricanes but their hotel is bracing as a precaution against Irma.

Have a restful night.  Catch you tomorrow!   X

Morning Caz.

With reference to your post, just how do doctors get it so wrong. Yours, and my experience is not just an isolated case either, I have heard of many more, perhaps they don't read the computer screens too well, all the information is there to see. I know the guy I saw yesterday is wrong from what other members of the team have said, and my own experience.

It has not been a bad day for me, I got quite a lot done. Tomorrow I will go to the library with a photo for my blue badge application, it's only two doors away from me, so it's easy.

I am glad your brother is ok, Irma seems to be packing quite a punch, I would hate to live in that region, with annual threats of danger.

Bodily functions continue to be good, but my hand is very bothersome, maybe there is something else going on here. A possibility I had not considered earlier, it would not surprise me at all.

I hope you had a restful day, and maybe another tomorrow?

Ta ta for now.

Morning Dougie.  

Yes maybe you're right. Perhaps some doctors don't read their computer screens/older ones don't understand technology or some don't fully understand English.  Although the doctor I refered to was young and English so I'd expect none of that to fit.  He actually turned his screen to show me when I asked him for a third time to explain again.  We never got mum's rash sorted out because he was more interested in convincing us there was no cancer, and for someone who has a lot to say, I was lost for words.  How do you get treatment for something in a situation when the so called 'expert' is on another planet?  

Anyway, thankfully that was an isolated case for us and I hope it was for you. We got to know the ones we could put our trust in and all my future concerns were discussed with them.   I also learnt to look outside the box and not to put everything down to the cancer when my mum had trouble eating.  The Macmillan nurse discovered she had Thrush and gave medication which cleared it up.  Discuss the problem of your hand with other doctors, especially the Macmillan team.  Do it at every opportunity.  Don't just mention it.  Be definite about wanting answers because it's of such concern and is affecting your living standards.  Trust your own instincts.  Get answers and make sure you understand them.  Question anything you don't understand.  This is your body!  

Don't worry too much that you haven't gained as much weight as you'd have liked.  You may be eating more but you're also more active so you're burning more calories.  As well as that, you've had variable amounts of water retention.  The good news is that you're not losing weight!  

I'm not at work again but I intend going shopping, then doing some batch cooking for the freezer.  And I'll be tracking that hurricane to make sure it steers away from the Dominican Republic where my brother is.  Hubby and I are going there in four weeks and I'm hoping all the hurricanes are done by then. We go to the Caribbean twice a year, either side of hurricane season.  I love a good tropical storm at night but I wouldn't want to be shuttered in against anything worse.  

Have a good day.  X

Something gone wrong, in lots of pain, and it's supposed to be chemo day.

Dougie. I hope you're alright and managed to get some medical help, or at the very least some pain relief.   Thinking of you. X. 

I hope all is sorted Dougie and you are back posting soon.

It's unusual for Dougie not to post.  Has anyone seen him on TWO at all today?  

I'm hoping he's just dealing with the chemo session he had scheduled for today.  I know I'm not the only one thinking about him and I hope he can feel us all behind him!  

Agreed Caz. Rather worried about Dougie...

Ah
He'll be grand after a burp.

Dougie, I'm guessing you managed to get yourself into hospital so I'm hoping you're getting the treatment and care that you need.  I'm thinking about you and I'm concerned.  Have a good burp as Tony suggested and get back to us.  Xx

Do I see Dougie back online?.

Did you have that burp?.

Hope you are ok.

Home at last.

Thanks for all the caring posts guy's, it's much appreciated.

OK, so went for the chemo, and told them of my situation.

 It was decided that the chemo would take place anyway, and that a consultant would be in to see me during the session. They arrived about half way through, two of them plus the senior nurse. I told them about the pain I had been suffering and my general demeanour over the last few days, their reply was that this was entirely consistent with the 30% chance I had been given. Talk about plain speaking, but maybe that was what was needed, but was a bit of a kick in the teeth after having felt quite a lot better for part of the last couple of weeks. It was also decided that I should stay for 24 hours, so that they could monitor my condition, and also balance the pain killers needed, so I was reasonably pleased by this. At least no more nasty surprises, or at least if there were any, I was in the right place.

The plan going forward is for chemo next week, and the week after, followed by a further break of one week. How that will pan out I haven't a clue, all I know is if there is going to be any success from all of this, it is very necessary. The pain will have to take care of itself, and will be monitored closely. It is caused by one of the tumour breaking free and growing, there has not been enough time to see if the new chemo will have any success in combating this, but I have told it it has to.

So, all in all, not too bad a day really, still very positive ,despite no good news, all the time treatment is being administered I have hope, it's when it stops that the time to worry will start.

Sorry if I scared anybody, it was not intentional, but I think the decision to stay for the 24hrs was the right one. Will try to get back on later, but I was unable to post anything yesterday because I only had my phone with me, and the battery ran out of steam.

Still here, and intend to be so for as long as possible.

PS Tony, lots of burps

Good and relief-filled news, Dougie.

Keep battling.

PS - been meaning to ask: I know you live in Kent and have relatives also down there, but always presumed you were from the north east (Ha'way the lads). Is this the correct assumption?

Hey Dougie,

Very relieved to hear you are OK (well not Ok. but you know what I mean...)

Take is easy over the next few days. Hope the latest batch of chemo does it's thing.

Glad you came home Dougie. Hope for better days.... 

Yes Saint. I was born in Sunderland, but moved to Glasgow when I was 6, finaly moved to the London area when I was 10, and been here or here around ever since. But home is where the heart is, and my heart is in the NE really. I certainly could not follow another football team, although, maybe I should

Thanks Gavin, it's good to be home, but in a way it was good to stay at Guy's last might. the chemo has not really kicked in yet, that will be tomorrow I expect. Right now I feel ok,

Thanks Art, thats kind of you

I have just switched over to my laptop for posting on TWO. For some reason my old PC does not like it any more. It works fine with most other programs.

Maybe I am just getting too old for all this technology.

Sorry Dotty.

I hope you enjoyed at least a part of your mini holiday. Hastings and St Leonards can be very nice at times. I don't know if it's still there, but there used to be a big swimming pool at St Leonards, and the water was lovely and warm during the summer months. The sea was relatively quite cold.

Yes, I know what you are saying Doc. Every day, I expect a tough battle, sometimes I win, sometimes I lose, but as long as I win the war, I will be happy.

Thanks for posting, it is appreciated.