Hi Meerkat,

Found your new thread after you replied to my post on your old one (I'm new to all this too!).  Poor you facing considerable surgery, but your medical team sound like they really know what they're doing. Must be strange to think about losing so many bits, but think of it as being a few pound lighter!  (Doesn't sound like you need to be though).  You will no doubt need plenty of time to recuperate so make sure all your loved ones give you a massive pamper package, and keep your laptop at hand to post on here.  Great that your friends are doing a charity walk, I have been threatening to do a charity run for my local hospice since Dad died, they've helped me so much through this terrible time so I definitely will do it in the future.

I am at an "acceptance mode" regarding my Mum at the moment, so am making the most of it as I know much darker days to come soon.  I can't believe that I find a chatsite helps, I never thought it was me!  Thank god for the internet eh!  Take care and keeping posting your virtual friends.  Hope23 x

Hi Hope,

Glad you've found me here! I'm going to 'cut and paste' your sentence about my loved ones giving me a massive pamper package and leave it lying round the house in various places . . . Maybe with a few ideas as to what constitutes pampering (for my partner!!! Say no more!)

It's good to read that you're going to do a charity run, some time in the future, for the local hospice who cared for your dad and who have helped you too.  I'm sure it will be a 'mixed emotions' experience when you run it, but hopefully an uplifting one, doing something in your lovely dad's memory!

I'm glad you're finding the chat site such a support and you are certainly doing your bit to support all of us out here! Even though you have said you know darker days are ahead, I'm glad you are making the best of the way you feel at the moment.

Stay strong, lovely Hope,

Meerkat x

Hi Jo glad you are recovering well.  I'm sure you'll cope very well with your new friend Stumpy.  Hopefully he's just a temporary one!  I know it will be hard not to worry about the biopsy results but just take it easy and look after yourself.  If you need any help or have any stoma related queries I will help if I can (even though I didn't have one myself I was totally involved in helping my husband with his....).  May the good recovery continue.xxx

Hi Meerkat,  Great to have you back. I'm so glad you actually got the operation as planned and that is was so successful.  You sound so upbeat and that is sure to aid your recovery.  Now just make sure that the pampering package we talked about is in place and make sure you take things easy.   Hope x

Hi Jo,

It was so lovely to read your long post yesterday, sorry I didn't have time to reply last night.

You really have done well and I pray that your recovery continues with such speed and vigour.

Niccola who also had surgey(tongue base cancer was also wondering how you are) has also seemingly done well.

It is always great when we have such positive news and positive outcomes.

I hope you didn't overdo it with your long post yesterday but look forward to hearing from you again.

best wishes

Annabel.xx

Hi Jo,

It's so lovely to hear from you! I'm so pleased your operation went so well and you sound so positive and happy, that's amazing! I like that stumpy has a name! I named my wheelie stand in hospital that had to come everywhere with me as I was attached to a feeding tube etc, it was called Squeaky Stan!

Glad to hear your operation wasn't cancelled at the last minute, I had a similar situation too where they thought there was no intensive care bed for me but finally one became available, phew! They obviously thought you would recover well, to decide to go ahead as they did. To have it cancelled would have been crushing news.

I completely understand about you saying you're feeling so tired. Others really don't understand how visitors wipes us out after major surgery, it has surprised me too. I'm now limiting myself to one visitor per day and that's enough but you sound like me, and that you are listening to what the professionals say about rest and how to aid your own recovery.

I'm finding it a bit strange now, as I feel like a small fish in a big pond now I'm out of hospital, I just have to see my regular GP and district nurse where as before all of the hospital staff knew what I had been through and were on tap for help. It was a little scary at first. But only 8 days following your op you sound as though you are coping both physically and mentally.  Well done! The bags must take some getting used to but you speak so light heartedly about it all and news that your tumour had shrank even more must have been news well received.mI'm very pleased for you that everything is going so well.

Enjoy your rest, watch plenty of TV and read lots of books and only you can be the judge of when you are up to visitors etc. it's time to be a little selfish! I hope recovery continues to go well and I hope that your meeting next Monday or Wednesday is good news for you.

Speak soon,

Nicola xx

Good afternoon, lovely virtual friends!

I hope the sun has been shining on you today!

Thought I'd drop a quick update on progress, while it's still fresh in my mind.

I saw the consultant today for the lymph node biopsy results. He started off by saying that he had removed ALL the tumour and was satisfied that he'd left healthy margins around the tumour site. The pathology report showed that cancer cells were evident in one lymph node and as a result I am going to need some chemotherapy treatment! I think it's a case of 'Belt and Braces' and he did ask whether I wanted the chemo or not. He said it reduced the risk of the cancer coming back. . . .though obviously, nothing is guaranteed! It didn't take too much thinking about and I've said I want to go ahead with it.

He also booked me in for a further MRI scan to 'plot' the cysts on my liver. These were apparent on my previous scans and were not a cause of concern, but he wanted to get a baseline assessment of them so that they can be monitored for change in the future.

So, I'm now back under the care of the specialist cancer hospital and I'll wait to hear from them about the type of chemo they feel suits me best and a start date. The surgeon has said to expect a slight wait as they will give me time to heal and recover a bit more, before hitting me with the drugs with a likely cycle of 6 months. He did say he can't reverse my stoma until the chemo has finished, so Stumpy is with me for a good while yet!

Beaker, do you have any knowledge in this area? e.g. Time scales, drug type like tablets or infusions? No pressure to respond.

I was half expecting this outcome and really, if the surgeon had said "you don't need chemo,"  I think I may have been anxious that there were some stray  cancer cells lurking about! Poor doc was in a no win situation with me!

Quick message to Annabel (as I don't want to cadge a lift on anyone else's thread) and you're hard to keep up with young lady!!! Hehe!

Annabel, I hope you have a fantastic stay with your daughter and new granddaughter, Ava, this week. Beautiful name, by the way! Enjoy every minute!

Will chat again soon, take care,

Best wishes to all, Jo xx

Hi Jo,

Glad you got the pathology results back now and there is some positive news about the margins.  Obviously zero affected lymph nodes would be ideal but only 1 affected is better than a lot!

Anyway regarding your question, due to my husbands complications, he never actually had any "proper" chemo apart from capcetibine during radiotherapy. From what I understand, six months is the standard time though there was a trial recently looking at whether 3 months was just as effective as 6. There are two main regimes - one with oxaliplatin as the main drug and one with ironitecan (don't think my spelling is right here!). Each has its own side effects.  These two main types are usually combined with a few other drugs.  I think they will be infusion based.  Hope that helps - I'm sure you'll get lots of info once you have your onc appointment.  Hope the recovery continues apace and you start chemo soon - sooner it starts the sooner it's over!xxx

Beaker, Thank you so much for a prompt reply.

I'll have a quick look at the drugs you mentioned on the CR website to give me a bit of a heads up. . . Even though nothing has been decided yet, I like to have some prior knowledge of the sort of thing to expect.

I am a little disappointed that surgery alone was not quite enough as I was hoping to only need 6 months off work (including a stoma reversal op!) but as we all know too well, cancer makes its own rules! And as you rightly say, only one node affected is better than a lot!

Your support here on this site is invaluable to people like me; thank you for taking the time to respond.

Jo xx

Hi Jo,

Great to hear that you had some positive results today.  I think you will feel more comfortable taking the chemo as it will cross all the boxes so to speak.  You have such a positive attitude that I'm sure you will be on a quick road to recovery and can start the chemo at the time the Drs think best.  Take care.  Hope xx

Hi Jo,

I am so thrilled -- (see the smile ) --  to read the progress you are making and the news that you just have to cope with some "belts and braces" treatment before getting rid of Stumpy.

It is so nice when someone posts good news here and you deserve it.  I appreciate that, even after chemo you may still wonder if there is still cancer floating about and I would imagine that Brian may have some thoughts on that after having gone through his own adventure.

So as the specialists have said just take time to heal and recover although I would suggest that if you are going to stay at home, avoid daytime t.v.  At least to me all the cookery programmes and Jeremy Kyle is just a form of torture to be avoided at all costs.

Take care of yourself Jo.

Garf. xxx

Hi Jo,

So pleased that you have been told you have clear margins. It is always nice to hear good news and you thoroughly deserve it. Chemo is something I know very little about. But I do know the feeling that good news gives us and the way it lifts our spirits.  I know how thrilled I was when my consultant told me my psa was so low it was only just measurable at 0.01. I came home on the bus with a smile a mile wide and anyone seeing me must have thought I'd won the lottery. But to get news like that was even better for I felt like I had been given a new life and I made an unconscious decision to enjoy my life to the full and to spend it doing what little I can to help others. I had to stay on the hormone therapy for about another fifteen months to mop up any stray cells  but I have now had 16 months with my psa this low. I am due for another blood test in just under a months time and I am not expecting any difference in the level, in fact I wont accept any change.

But back to you Jo. Just take your recovery slowly and try not to expect to much at once for you don't want to do too much to soon. Your friends are here for you as always. I hope your MRI scans go well and your recovery continues to go well.

Take good care of yourself, sending best wishes to you as always, Brian

Hi Jo,

So pleased that you have been told you have clear margins. It is always nice to hear good news and you thoroughly deserve it. Chemo is something I know very little about. But I do know the feeling that good news gives us and the way it lifts our spirits.  I know how thrilled I was when my consultant told me my psa was so low it was only just measurable at 0.01. I came home on the bus with a smile a mile wide and anyone seeing me must have thought I'd won the lottery. But to get news like that was even better for I felt like I had been given a new life and I made an unconscious decision to enjoy my life to the full and to spend it doing what little I can to help others. I had to stay on the hormone therapy for about another fifteen months to mop up any stray cells  but I have now had 16 months with my psa this low. I am due for another blood test in just under a months time and I am not expecting any difference in the level, in fact I wont accept any change.

But back to you Jo. Just take your recovery slowly and try not to expect to much at once for you don't want to do too much to soon. Your friends are here for you as always. I hope your MRI scans go well and your recovery continues to go well.

Take good care of yourself, sending best wishes to you as always, Brian

Hi Brian,

Thank you for your lovely message! It was a good news day wasn't it? I could have hugged my surgeon when he told me that he'd removed all the tumour! He did say it was quite large and quite advanced! This was news to my partner and I as I assumed I'd caught it really early! Obviously, still early enough though!

You are so right about how your perspective on life changes! I too, like you have already started 'living life' differently since my diagnosis. I've started a 'little book of joy' where I log the little things in life that we so often take for granted or simply overlook because we're too busy to notice! A bit like the Amazing quotes and Uplifting thought for the day threads on here!

I see from another thread you've been stocking up on nut supplies! I haven't seen the long range forecast for winter, but as any Boy Scout, Girl Guide or squirrel knows, you need to be prepared!! Just remember where you bury them!!! We have a squirrel who digs up our lawn every year, looking for lost nuts!

Can I suggest that you do some consumer research with the new season chestnuts? Taste Test all the packets you've bought and then when you're sure they pass the Brian test, go and buy some more! As long as Mrs B doesn't mind!

Well, it's nearly midday and time to do a few exercises to keep the DVT's away! It's cloudy but dry here, so I may incorporate a little walk around the garden in to the regime! (And see if our squirrel has started on the lawn yet!)

Take care, Brian, best wishes, Jo xx

Hi Jo,

I just love the idea of doing consumer research on chestnuts. Now that is a job I would happily come out of retirement for. I could ask different shops for free samples to see if their nuts meets the Brianitus kite mark. I could then get a plentiful supply completely free as every time they have a new batch I would just have test them wouldn't I. That's excellent thinking Jo. As for Mrs B minding, she is used to me and my nutty ways by now!!!!!!!!!!!!!

Take care Jo, best wishes, Brian,

Hi Jo,

Just wondering how your radiotherapy has gone today.

Maybe a little early to ask you.

Thinking of you

Annabel. xx

Hi Annabel,

Thank you for thinking about me. We're just back from the hospital after a very long day! My appt was for 1o'clock, but the chemo nurses were running an hour behind. Then I had to have a chat with a nurse about the treatment and finally, around 3.30 I was hooked up to the drip. The infusion lasted 2 hours then a 10 minute flush through, then home!

I was warned about tingly fingers and being sensitive to cold. Wow! I only touched the radiator at home, and my hand went into pins and needles overdrive.

I then tried a piece of pasta to see if it as cooked and that made my jaw go funny! Even though it wasn't cold! Now sitting with my hand on a hot water bottle and I'm wearing wooly gloves! Hospital advice.

I got chatting to a man who is having the same chemo as me  and is 3 cycles into treatment. He gave me some great tips and things he's experienced. Thankfully, he seems to be coping ok with it. Fingers crossed I'm the same so, only 7 more to go! 

How are you? And how's little Ava doing? Bet she's filling out now.

I enjoyed the 'udder' cream thread the other night! Really made me smile.

Take care and keep me posted with baby news.

Big hugs, Jo xxxx

Good Morning Jo,

When I last spoke to Charlotte, my daughter, baby Ava is doing a bit better thank you in as much as the feeds are beginning to be further apart. She has put on weight and has been discharged from the hospital check ups on her bilirubin levels. Charlotte is finding just talking to me helps her worry less. It's the practical midwife side of me that obviously come out on the phone. Charlotte and her husband are hoping to go out for a meal soon for the first time since Ava's birth. My son who lives fairly near them will be chief babysitter.!!! Otherwise known as Uncle Baba.

His nick name Baba.

Your treatments side effects are amazing. It makes you wonder exactly whats going on in the body whilst the chemicals are doing the rounds. I hope all your cycles are fine and you don't suffer too much. The hot water bottle sound a good idea, maybe you'll need a few more. !!!

Well it's a miserable day here today after an awsome day yesterday. we had a large clear up of leaves from the lawn yesterday as it was probably our last chance. The ground is very wet again. Inside work today, he ho.

Keep your chin up Jo, we are definately rooting for you.

Annabelxx.

Me again,

I have to agree with Annabel in that it's very strange to think what is going inside your body for the treatment to affect your touch and senses in a certain way.  Are  you sure you aren't getting pins and needles reaching for the remote when Jeremy Kyle is on the telly?

"Anfon dymuniadau pob lwc i berson arbennig!"

Don't worry I haven't gone mad it's just a message in my native Welsh to wish you the best for your treatment and recovery.

Good luck Jo.

Garf. xx

Hi Jo,

Just reading about your recent chemo treatment and wanted to say that I hope you are doing OK and not having too much of a reaction; hopefully tingly fingers calmed down now.  Thank you so much for replying to me on my thread when you are going through so much yourself, I have left a message for all my virtual friends on there.  Hope you have a relaxing weekend and let us know how you are doing. Hope xx

Hi Jo,

We haven't spoken for a while and am just wanting you to know, I often think of you. I do hope you are keeping well and that your treatment is progressing well without any bad side effects. I am still as "nutty " as ever, too old to change as my dear wife says.

Do take care, sending you best wishes and kind thoughts, Brian.

Morning Jo,

Don't know how else to find you but to seek out this thread of yours.

Haven't really had anywhere to ask how you are you are doing and what stage you are at with your treatments.

I know you were having some side effects from the chemo but don't know how it is for you at the moment.

How did Christmas go for you and your partner?

And did you get up to Scotland for New Year?

You are one of those lovely people on here Jo who always sems to be giving.

Look forward to hearing from you

Hugs

Annabel.xx

Hi Jo,  Would just like to add to Annabel's post to see how you are doing? and to wish you a Happy New Year.  Hope x

Hi Annabel,  How are you doing too?  Wishing you peace and happiness for 2014.  Hope x