Slightly stunned and shell shocked

HiReetpetite58

Hope you managed to catch a little sleep after being delivered that blow .

Having sat through some pretty major pre op meetings with my mum I can totally associate with the dismantling feeling . The enormity of the what may possibly happen including how her organs might such down during one meeting left me stunned . However after the surgeon delivered that part he asked what we thought . I mustered up a “ roughly what we expected” and his shoulders immediately dropped an inch . A look of relief swept across his face and I realised he was in pain to ensure we fully understood the full implications of consent and therefore a really thorough surgeon .

I did then ask if it a reasonable decision to proceed . At that point it switched to a list of positives of what surgery could achieve .

I then talked it through with a family member who works a very complex theatre list and they fully endorsed it was a complex operation and that would be the standard approach to full consent for such a procedure . However it would be a worse case scenario . 

The surgeon also asked me how he did delivering such information . I found that interesting as they are aware they have to consent fully or face the consequences but they are also aware just how difficult that information is to hear . 

Despite it all I can say  absolutely none of the worst case scenarios happened . Not once . 

We also decided that they would not be even attempting it if they did not think there was a strong possibility it would work . 

It is a shame you did not get the opportunity to ask him/ her how often they face the worst case scenario as that might have given you a wee bit of insight into the odds of this actually being an outcome . 

However the positives are you have responded well to treatment , it’s in a tricky location and your surgeon is dedicated to the point of being thorough with you and hopefully that means they are the same in theatre and will have you to NED very soon . Did they say when you will be operated? 

The stoma parts I can’t help with but it might be wise to link in with

take care and have a bit of a rest today as I felt dismantled for a few weeks after and I was not even the patient . Psychologically pinned against the wall summed it up for me .

Much love and strength ,

Court  

Reetpetite58

Morning Rita

Hope you managed to get a bit of sleep last night and not laid awake with a ‘head stew’ going on as my husband likes to call it. 

Youve had a brilliant reply from Court and I hope it’s helped lift your mood a bit. During that long break between chemoradiotherapy and operation I almost forgot about I was ill as my symptons had improved and I had no appointments for a while and then bam it was back to meetings, scans, ecgs, bloods etc. As Court says the surgeon always has to advise you of every eventuality no matter how unlikely and it does make for quite unsettling listening. It sounds like Southampton is pretty experienced and specialised in these sort of ops so you’ll know that they will be doing their absolute best for you.

You’ve done so well this far so take a deep breath and show this cancer that it’s not going to get you down. Sending you a big hug  

Take care

Karen x

Thank you Court and Karen for your replies. I did manage to sleep last night, surprisingly better than I expected (probably something to do with the rum and cokes I had before I went to be ).

The surgeon did explain that the worst case scenario was very unlikely to happen but he does obviously have to tell me about it. The surgery is likely to be in November.

Today is a new day so I'm cracking on and dealing with each day as it comes.

Thank you both for your kind words and I hope things continue to go well with you and yours.

Hi Rita,

I started at a very similar  point to you, an abnormal screening followed by a colonoscopy. The path was made very clear at that that the first recourse would be surgery even in the very unlikely event that the tumour wasn't cancerous. Then I had a CT for staging. My tumour was at the distal end of the sigmoid colon so as they gave you chemo radio I assume yours in lower down in the anus.

Some of the team in Southampton are involved with the Pelican Cancer Foundation  which is promoting better treatment, here at Basingstoke our claim to fame is Prof Heald who  pioneered the TME. So as bad as it may sound you are with a team that are pushing to get the very best results for their patients.

As for me I had surgery in July to remove the sigmoid and part of the rectum (anterior resection) and they chucked me out after six days. They did say I might have a stoma but I didn't but that is one reason you may have to stay longer it's just another wound they have to be sure is healing.

I won't say it's been plain sailing since but I am getting about albeit carefully.

D

Thanks for your response D. I'm pleased to hear that you are on the road to recovery. I know I am in good hands with the surgical team in Southampton. What I hadn't been expecting to hear was that I would be having a pelvic side wall resection that was likely to take 10-12 hrs and would require a 3week stay in hospital. However, I have just about got my head around that now and I'm starting work on my fitness before the surgery that will likely take place in November.

Well done Rita. You have some strength of character .

Court 

To be honest I don't think anybody is ever ready to hear 'this is going to be a big operation' especially if you had the impression that it was all going to be fairly plain sailing. I think the duration for you should be irrelevant they didn't tell me how long it would take but told my family when I was expected out of theatre about 6/7 hours as it turned out I was in recovery for another 7 hours before they could take me to the ward. My late husband had a TME which took about 12 hours and he was sitting in a chair waiting for visitors the next day, his was an open procedure. As you said before they are talking worst case so you may find you are out before 3 weeks, besides its better to be well when you leave and if they decide on early mobilisation they will keep you busy they certainly did for my husband. 

Fitness is never a waste but don't go mad you want to be in prime condition!

D

Hi Rita

Your case is identical to mine and I was told the exact same things a you in my Southampton appointment. I decided to have the Low Anterior Resection instead and hope that the chemo afterwards will mop anything else up.I had the operation on Wednesday and as I type this I have just returned from hospital and sitting on my sofa. The operation went really well and the tumour and all areas concerned hopefully removed in full too. I have hopefully a temporary bag for a while and only the histology from the tumour and my scans in 6 weeks will tell if I made the right decision.I know the exact emotions you are going through and cried for days after visiting Southampton. I have family problems too with cancer and dementia affecting both my husband parents and mine. Life can be cruel sometimes, but hang in there and think it all over and make the decision which is best for you and that you feel happy with. Sending you a big hug x

Hi Hope Bear, really pleased that you are through your op. I have private messaged you. On a positive note my husband had his biopsy results and they are all clear, hurray! 1 less thing to worry about. My father-in-law is being assessed for his dementia tomorrow. You're so right life is cruel I lost both my parents to dementia. Anyway back to the gym tomorrow to start getting as fit as possible before November. Take care of yourself and make sure others do as well.

Hi Rita,

I had the extended margin (TPE) operation for my rectal cancer 12 months ago. I am now fit and healthy and living a virtually normal life ( albeit with two permanent stoma bags). 

My consultant was of the opinion that it will maximise my life expectancy. He finds it very sad when patients go against his considered advice and has to either operate on them again to deal with secondaries in the perineum or that they are now inoperable 12-18 months later. He only does the operation for people who he considers to have good survival rate potential and who he is confident that they can stand a gruelling 10-12 hour operation for a specialised team of colorectal and urologists. To be offered such a chance is in my view a strong vote of confidence that you can be cured. 

As it turned out they discovered that I had a second primary cancer ( Prostate ). So my operation effectively did the job of eliminating ( to the best of their ability) future occurrences of rectal, prostate or bladder cancer for me. ( Yes I know the Prostate part is irrelevant in your case).

In the 12 months since, I have been very active walking ( in a very hilly area!), building a summer house in the garden, log store, various DIY projects around the house and playing lots of guitar!

My GP asked a former colleague of his for a second opinion on the quiet and he totally agreed with my treatment plan given the proximity of the tumour.

Yes it was a massive shock to be told I needed to have it done, but it worked for me and most people looking at me and my fitness have no idea what I have been through during the last 20 months. 

Good luck which ever route you choose.