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 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

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