AWAKE.........

Hello all sorry been quiet had bit episode yesterday morning with my lorazpam was shaking going within myself iao my dad gsve me some lorazpam i have neen prescribed for when these episodes occir, so thst helped and going for lunch with ny best friend, it was oger my mri scsn tjst evening, I always thought was procedure i wss worried about but after nearly breaking down wirh physcolgist today irs the outcome also as it was done in whole spine its whenever spinal consultant can do anything to crushed vertebrae as in lot of pain and broke down todsy saying i dont want to be in morohine ore gsblinn rest my life I want bit  normality is that too. Much to ask and be pain free?

moomy sendnlove to your daughter hope she mskes speedy recovery with her cold and you are well as you cam be =)

LondonLass i really am so sorry younsrw stilll no further forward snd still having rubbish time me and lister send you sll the cuddles snd snugs xxxxdd

Grogg  as you know mum had her thyroid out results were in and its quite aggressive so she having six weeks of radiotherapy five days a week chemo once a week six weeks i wont lie been worried how sje going be sife effecrs and beeak ny heart seeing uncomfortable as she so inderpendant dad says he going to drive her in every appointment when it starts. Hoeever my physcolgist tried make ir to think ir as fundraising target..

Anyway off to get my nails snd brows done im not sure if you lovely fruit loops remember me saying im gong to a ball well irs this Saturday for the cancer unit. I wondered if you would. Like. Me put some. Pictures of me all. Done up

Much love fruit looops

Xxxdd

OK, So to continue my saga. 

I did eventually (8 days after first trying)  get a call back from my oconologist. It turns out he has been away at conferences (is there a suitable emoji to use here?) 

Things I took away from the conversation. 

He was very good at summarising things I said to him in the conversation - in particular that, of course, I want the best outcome, if (big IF) I could come through the treatment without lasting damage to my body or mind. We agreed that there are no guarantees but he was reassuring about the options of managing distressing side effects. He also reminded me that there was counselling available for managing anxieties etc - I'm glad he told me, but I've already set up an appointment with a psychologist/counsellor through Maggies because I know I'm not good at coping with uncertainty. I want facts - GIVE ME FACTS (Ok - calm down Val)     

He says the standard treatment in my NHS Trust is FEC and FEC-T (incorporating 3x3 weekly Docetaxel).   I queried the inclusion of 5-FU. He believed there was no reliable research comparing the effectiveness of FEC vs EC or FECT vs ECT. However, I told him about the European (ESMO)  Clinical Practice guidelines that I'd read (which suggested there was) and my understanding that other trusts regularly used EC. He has promised to go away and confer with other oncologists in the Trust. I'm not sure whether it'll actually make any difference (and of course I may have got it all wrong) but at least he listened. And I think if I stood my ground they may allow EC-T as a regime (but not sure if that's sensible - after all he's the one with the training) 

Ditto the choices between Docetaxel and Paclitaxel. In my NHS trust Docetaxel is standard with Paclitaxel being the alternative when Docetaxel causes significant SE. He is asking about that too. I think he said he believes there have been no  reliable direct comparisons of the two options. But he didn't rule out weekly Paclitaxel (Again I'm not sure if it's sensible to baulk against the Trusts standard treatment)

We talked about the use of Bisphosphonates. I won't / can't get them as I have no lymph node involvement, my tumour was less than 2cm and I'm triple negative rather than ER negative/HR positive).  

We also discussed the risks of peripheral neuropathy (my big fear) and how to manage them.  I was surprised that HE brought up cryotherapy gloves (they were on my list but I didn't have the nerve to raise them). He mentioned that he knew that some women have used cryotherapy gloves but didn't know what the practical implications of that would be for the Chemotherapy units. I'd read about these and researched them . There are some on Amazon for an astronomical price (I think about £250 per pair and you have to have more than one pair because they start to thaw after 45 mins). I'm more tempted by those than I am by scalp-cooling - but the scalp cooling equipment is properly controlled whereas freezing gloves to a (probably) unknown temperature makes me feel that it might be very difficult to use them safely (even leaving aside whether or not they might actually work).  Does anyone have any direct knowledge? Is this a step too far? 

And I asked about continuing to take Omega-3 (I do anyway,  but there is also some (possibly dodgy) research that Omega-3 might offer some protection from PN). He seemed fairly relaxed about my continuing to take it but will check with the pharmacist. If the pharmacy objects I can always just overdose on salmon!

So I guess I'll be joining some of you crazy people in the February chemo group. And you know what - after getting over this hump I'm not sure what all my fuss was about (but I may feel differently in 15 minutes).

Thanks for all your support. It really helps.  

Onwards and upwards. 

Would love to see some pics xxx

Well this is suddenly all looking very serious. Not like us Fruit Loops to have no funny pics! So you can rely on me to lower the tone

How about this one! I thought with my current issues it was quite apt.....

SORRY! But I did say I was going to lower the tone and HOPEFULLY raise a smile or two!!

This one was Super Cute.... 

And let's finish with what we are all thinking...... or maybe it's just me!!

I heard from GP secretary. The referral has gone through. So now I wait for an appointment with??????? Hmmmmm good question?? Also been asked to go in for yet another blood test to screen for coeliac!! Which she had already said was VERY unlikely! I hope shes right!

glad today has been a better day. Hope you enjoyed lunch with your friend. Fingers crossed your mum will tolerate treatment well.

pleased to hear you have spoken to the oncologist and you feel more relaxed about things. Hopefully the lovely ladies on the chemo thread will answer any questions about treatment and of course most of us have already been through Chemo and come out the other side and sadly some of the Fruit Loops are on continued Chemo! But hopefully you'll never need to know about that! ((((((HUGS)))))

Hope everyone has a lovely evening. Sal xxx

Hi LondonLass,I’m Jane from the bladder board.I wanted to thank you for this thread which kept me going through some very bleak,miserable nights before surgery 4months ago.I hope your bowel issues can be sorted asap.Love & Best wishes to you & all the fruit loops & L.P of course.Love Jane xx

Yes please photos definitely needed ! Where is the ball ?

margaret x

Awwwwww winkers60 THANK YOU for sharing that. It's so nice to know that this thread has helped others, like you as well as the regular posters who keep the light heartedness flowing!

WELL DONE Fruit Loops! Let's try and keep up the good work! Everyone knows Cancer is C**P! BUT we are here to show them that it's okay to joke and smile too! Having Cancer doesn't mean you have to be sad and scared all the time! Sometimes things get so bad that all you can do is LAUGH!! After all, we all know LAUGHTER IS THE BEST MEDICINE!!

AHHHHHH but NOT when you have the "runs"! Then laughter is VERY VERY risky  xxxx

Hi LondonLass sorry to here you're still running .. will try not to make you laugh  

It's alright you don't need to get up 

Bought you this in case you had run out 

Just wanted to say ( warning toilet humour )

Also

In fact 

Margaret x

Nearly Friday

LondonLass

Glad things are now moving in the right direction.

Yes please do show us the glam pictures  Stroke to Lister Boy x

Val you are brilliant to research before meetings with Oncologist! Keep him on his toes I say There is a crafting thread can’t remember name will tag and Snowys Mum . 
Judith