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,

So please to hear you had such a good time. I must say we have all missed your input.

I wish you all the very best for Tuesday and will be thinking of you. Please take good care of yourself, best wishes, Brian.

Glad you are back safe and sound from your trip to Scotland.  Also glad that the Flying Scotsman you had was missing some Haggis. - YUCK!

It seems we both failed to do any shopping while on our trips.  As a fan of Formula 1 and McLaren I just didn't find the time to go to the McLaren store in Knightsbridge as there was just too much sightseeing to do.  It's probably just as well as it would have ended up being an expensive visit. I did need to buy some plasters for the blister on the bottom of my foot though.  I knew I should have taken different shoes.

I just want to wish you all the very best for Tuesday and to let you know my thoughts will be with you.  Please, please come back here to let us know you are o.k. and how the operation went.

GOOD LUCK!!!!!!!!!!!!!!!

Garf. x   

Hello Jo,

So lovely to hear from you. It sounds like you had a great time up around Glasgow.Are you telling us you were good and didn't have a knickerbocker glory with him. ( Can anybody tell us why it's called a knickerbocker Glory???)

Anyway I hope you are feeling rested and at least you have been away. I am sorry you've come back with a sore throat. Gargling with a good mouthwash just might help that before Tuesday Jo. ( Sorry it's the Nurse in me, still comes out sometimes). I have to say I love Scotland and was up in Dumfries the other week but then I don't live far, being in Cumbria.

Thank you so much for your congrats at me becoming a Nanna. It was such a shock as she wasn't due for another 4 weeks . Anyway they are both fine now, My daughter had to have 4 units of blood transfused today as she had quite a bleed at the end of the process. She is feeling a lot better now and able to get up.

Well I hope you enjoyed a lovely meal this evening Jo before the low res diet tomorrow. Have a peaceful weekend Jo. I shall wish you well for the op next week.

best wishes

Annabel.

Hi Jo,

I have come as promised, to wish you all the best in the world for your operation tomorrow  . Bet your sick of the low res diet already.

I shall definately be thinking of you tomorrow . Let us know how your getting on when you can, will be lovely to hear from you.

Grandaughter weighed 6.3 lbs at birth and although a little preterm they went home last night after she had had some uv therapy. Haven't spoken to my daughter today yet as I have been working this morning. So will catch up with her later today.No name yet but I don't suppose it will be long.

Hope you are feeling as calm as you can. There comes a point where you just have to put all faith and trust in these people and let them get on with their job.

You'll be in the post op ward before long.

Chat soon

Hugs

Annabel. xx

Hi Annabel,

Thank you so much for your lovely, kind wishes for tomorrow. Yes, the low residue diet has become boring! It's amazing how everyone else's plate looks so appealing with colourful vegetables on them! 'White' food certainly is as bland as it looks!

Today, I've been preparing myself, practically and mentally for tomorrow. Keeping busy practically has been easy, but the mental preparation has proved more difficult! I can't help feeling a little bit anxious about tomorrow; from "Will we get there on time?" to "Will the operation be successful?" However, there comes a point when you just want it to be done so you can get on with the next chapter of the story! And this is where I'm at!

I love reading about your new granddaughter. So glad your daughter and baby are back home now. Did I see in a post to Jules or Hope, that you'll be skyping? Technology is fantastic! We keep in touch with my partner's daughter and grandson via FaceTime (they live up in Fife)

Well, as I said to Hope, I'm going to have a bit of a self spa! Mainly to relax, but also to keep out of the way of the kitchen where delicious food is being prepared! Not a hint of anything white in sight!!! Grr!

I look forward to logging in, in around ten days to catch up with your news. And no doubt I'll see your supportive messages dotted about the forum too!

Thanks again, Annabel, and you take care of yourself too and enjoy skyping and 'real time' with your new addition!

Jo xx

Hi Meercat Just wishing you all the best you will be in my thoughts

Ruggles

Hi Jo, Just to let you know I am thinking of you and praying you are doing really well.

Annabel. xx

Hi there Jo,

Just wanted to add my best wishes for you even though you will still be in hospital at this point.

Look forward to hearing from you when you get back.

Garf. x

Hi Jo,

Still thinking of you and hoping all is going well. Look forward to hearing from you.

Annabel. xx

Hi everyone!!

Thank you all so much for your kind messages.

Well, I can't believe it's only 8 days since my surgery. I actually came home yesterday (Tues) but wanted to settle back into home before logging into to see how my virtual friends are doing!

As you know, I went for my op last Tuesday and arrived at the hospital on time. . . And would you believe, there was no post-op bed on the critical care unit available!! Rather than cancel the operation, my surgeon and the anaesthetist, took the calculated risk that as I was young, fit and healthy they would go ahead with the op and I would be on hourly observations on a general ward . . . Good call!!

It was a rather bizarre situation when I met the anaesthetist; I knew her personally, and had taught her kids! However, it made me feel more comfortable and confident about the whole thing (though I could see how 'knowing' your medical team, could be a bit weird for some patients!)

I awoke after the 6 hour op to the news that the surgery had been very successful with more evidence of tumour shrinkage since the scans a few weeks ago! I'd still had the anticipated hysterectomy, but my other 'lady bits' were left intact as the tumour had reduced sufficiently in these areas to leave a good margin.

It took me a few days to get up and about, partly because I was attached to an epidural drip and catheter, but slowly, as the days have gone on, I've grown stronger and more confident.

My surgeon is really pleased with my progress; I think it's a combination of good pre-op management (high protein diet, energy drinks etc) excellent surgical intervention (I love my surgeon!!) and lastly, my dogged determination to beat this b****y disease! (Excuse language!)

Other than family, I've not told anyone I'm home yet as I do tire easily! (A shower and hair drying session wiped me out this morning!) So visitors are being strictly vetted . . . Especially the exhuberant ones (and some of my friends and colleagues are a little exhuberant to put it mildly! As much as I love them!)

I'm learning to love my stoma . . . I thought the stoma nurse was going to pass out with excitement when she first saw it! According to her it's a 'text book' stoma. A little longer spout than usual, but she has assured me this has more advantages than disadvantages. (Another poor lady on the ward had a stoma that had gone back inside so was harder for her to manage so her hospital stay was much extended! Poor love!)

I'm finding out what foods affect 'Stumpy' (yep, I've named him!) and hot chocolate at bedtime is a definite no, no! He had the ward up all night with his 'singing'!!

A girl on the ward asked if she could have a look at my ileostomy so I treated her to 'stoma care workshop' Wherever I go, the teacher in me just has to come out! It actually empowered me to do it in front of someone and helped her as she's likely to need one and to see something first hand, is better than pictures in pamphlets!

My partner, who is usually a very squeamish guy, has been so supportive and watched me change my bag this morning. He didn't run away and was more fascinated by the technology of the bags!

So, apart from a visit from the District Nurse today, I'm pretty much 'Medic' free until next week when I go to clinic for the biopsy results. I had forgotten about this stage (marshmallow brain!) and I'm trying to live in the moment before worrying about the results. But if I have to have more chemo, then so be it!

I've got this far by listening to the professionals and doing what I'm told, so a bit more of the same isn't going to harm me!

I intend to catch up with your stories/threads over the next few days, and hopefully post some individual responses to you all, though a quick glance shows that you're all still out there being your lovely, supportive selves!

It's great to be back! I've missed you all!

Much love, Jo xxx

Hi everyone!!

Thank you all so much for your kind messages.

Well, I can't believe it's only 8 days since my surgery. I actually came home yesterday (Tues) but wanted to settle back into home before logging into to see how my virtual friends are doing!

As you know, I went for my op last Tuesday and arrived at the hospital on time. . . And would you believe, there was no post-op bed on the critical care unit available!! Rather than cancel the operation, my surgeon and the anaesthetist, took the calculated risk that as I was young, fit and healthy they would go ahead with the op and I would be on hourly observations on a general ward . . . Good call!!

It was a rather bizarre situation when I met the anaesthetist; I knew her personally, and had taught her kids! However, it made me feel more comfortable and confident about the whole thing (though I could see how 'knowing' your medical team, could be a bit weird for some patients!)

I awoke after the 6 hour op to the news that the surgery had been very successful with more evidence of tumour shrinkage since the scans a few weeks ago! I'd still had the anticipated hysterectomy, but my other 'lady bits' were left intact as the tumour had reduced sufficiently in these areas to leave a good margin.

It took me a few days to get up and about, partly because I was attached to an epidural drip and catheter, but slowly, as the days have gone on, I've grown stronger and more confident.

My surgeon is really pleased with my progress; I think it's a combination of good pre-op management (high protein diet, energy drinks etc) excellent surgical intervention (I love my surgeon!!) and lastly, my dogged determination to beat this b****y disease! (Excuse language!)

Other than family, I've not told anyone I'm home yet as I do tire easily! (A shower and hair drying session wiped me out this morning!) So visitors are being strictly vetted . . . Especially the exhuberant ones (and some of my friends and colleagues are a little exhuberant to put it mildly! As much as I love them!)

I'm learning to love my stoma . . . I thought the stoma nurse was going to pass out with excitement when she first saw it! According to her it's a 'text book' stoma. A little longer spout than usual, but she has assured me this has more advantages than disadvantages. (Another poor lady on the ward had a stoma that had gone back inside so was harder for her to manage so her hospital stay was much extended! Poor love!)

I'm finding out what foods affect 'Stumpy' (yep, I've named him!) and hot chocolate at bedtime is a definite no, no! He had the ward up all night with his 'singing'!!

A girl on the ward asked if she could have a look at my ileostomy so I treated her to 'stoma care workshop' Wherever I go, the teacher in me just has to come out! It actually empowered me to do it in front of someone and helped her as she's likely to need one and to see something first hand, is better than pictures in pamphlets!

My partner, who is usually a very squeamish guy, has been so supportive and watched me change my bag this morning. He didn't run away and was more fascinated by the technology of the bags!

So, apart from a visit from the District Nurse today, I'm pretty much 'Medic' free until next week when I go to clinic for the biopsy results. I had forgotten about this stage (marshmallow brain!) and I'm trying to live in the moment before worrying about the results. But if I have to have more chemo, then so be it!

I've got this far by listening to the professionals and doing what I'm told, so a bit more of the same isn't going to harm me!

I intend to catch up with your stories/threads over the next few days, and hopefully post some individual responses to you all, though a quick glance shows that you're all still out there being your lovely, supportive selves!

It's great to be back! I've missed you all!

Much love, Jo xxx

Hi Jo,

Welcome back and I'm so please everything went so well for you. won't post  much at the moment but just to say we have all been thinking of you

Take care, best wishes for a full and speedy recovery, Brian

WELCOME BACK JO!!!!!

I am thrilled for you that the operation went so well and that you are back in the comfort of your own home - well as comfortable as you can be anyway.

What a good decision it was to go ahead even though there was no pre-op bed available, so often all kinds of operations are cancelled at the last minute through lack of beds. Also that it turned out you knew the anaesthetist was an added bonus although any that I have met have always been good at putting the patient at ease.

Keep up the good work and you must let us know how it goes next week.

Best wishes to you.

Garf. 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