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 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 Hope ,

Thank you for your kind message.

I had a bit of a low last night.  I know logically that chemo is going to sort me out, but I had hoped to 'escape' another stage of treatment. My logical brain was telling me to get things in perspective and 'get a grip' (I'm sure there are many others who would be singing from the treetops with the news I had yesterday!) but I think I've been upbeat for so long, a slight stumble on the path is hardly surprising! Maybe a dose of daytime TV is just what I need! An hour with Jeremy Kyle is enough to make anyone count their blessings! Hehe!

Take care, Jo xxx

Hi Hope ,

Thank you for your kind message.

I had a bit of a low last night.  I know logically that chemo is going to sort me out, but I had hoped to 'escape' another stage of treatment. My logical brain was telling me to get things in perspective and 'get a grip' (I'm sure there are many others who would be singing from the treetops with the news I had yesterday!) but I think I've been upbeat for so long, a slight stumble on the path is hardly surprising! Maybe a dose of daytime TV is just what I need! An hour with Jeremy Kyle is enough to make anyone count their blessings! Hehe!

Take care, Jo xxx

Hi Jo,

Sorry to her you had a bit of a low last night.  You have been through an awful lot and I think you have been amazing, you cannot be expected to stay upbeat without having some lows.  Sometimes our logical brain doesn't make any difference because what we feel in our heart takes over.  I hope you've been having a rest and god only knows that Jeremy Kyle is definitely enough to make us count our blessings!  I hope your friends and family are pampering you and that you are soon feeling a little more upbeat again.  Hope x