Extended Right Hemicolectomy

Dear CCM154

Firstly, I'm really sorry you find yourself on here, as wonderful as most people are I think we'd all prefer not to be on here.  Much of what I say I've posted before, people must be really bored of reading it and it will repeat a lot of the good advice offered by others.  Like you I was diagnosed the week before Xmas, in 2017.  Like you it was totally unexpected, so much my wife, a Dr didn't bother to come to the scope.  Also, like you it was a very blunt diagnosis, "I 'm going to stop this you've got a large tumor, looks malignant to me," with the scope still in place; I actually preferred that matter of fact approach.   You are  in THE worst part by far in my opinion, only an idiot would say don't worry, but I'm sure the reality will be better than you  expect.  I found myself getting irked by trivial things.  As it was Xmas - the radio kept telling me it was, ‘the most wonderful time of year’, I didn’t agree.  Also, I suddenly noticed the sheer amount of ‘cancer adverts’ one encounters on a daily basis, they suddenly seemed to be everywhere.  I also got exasperated with the 'hand holding/head to one side type offering advice such as ‘be brave’ as if it was a conscious choice to get cancer.  I took to saying, 'I'm fine, but what the hell is wrong with your neck?'

You will probably be desperate for some accurate information that's relevant to him, I'm sorry to say there is none until the New year.  Prior to going in hospital DO NOT GOOGLE anything.  I looked afterwards & found there's some very weird and not very wonderful stuff. If you have any questions, and you will do, ask the team who will care for you, or the support lines on here.  Google is to be avoided at all costs, I looked after surgery.  My favourite was a woman living on the California/Arizona border.  She advised giving up all food completely and sitting outside for 8 hours a day to take in the 'nutrients sent by nature', clearly she had never wintered in Liverpool!  

Try even  to focus on things you do as a family. For many in Liverpool life is measured in football and so it is with my family it.  I went back to Anfield a month to the day after surgery - recovery is that quick.  The surgery was nowhere near as bad as I thought it would be, the most painful moment was when I persuaded my wife, a hardworking doctor, to take a break from looking after me and go with the rest of the family to see LFC Vs Spurs.  Mo Salah scored a brilliant goal in injury time and I inadvisably tried to leap off the sofa in delight; BIG mistake, that hurt. 

A stay in hospital was entirely new to me I’d never spent any time in one before my surgery, I was even born at home.  Hospitals are hot, the Royal Liverpool was at sauna level in January! I spent the entire time there in a pair of pyjama shorts, get a size larger than you’d usually buy, and little else, no top or sheets, it was too hot; that's possibly not an advisable look if you're female. The heat and the fact you will hardly eat anything at first means drinks are really important.  The g/f of one of my son's had a relation who had just had the same operation - she visited armed with frozen fruit drinks one day & a Costa to go go another; both wonderful.  I had the op on a Wednesday and left hospital on the Saturday, three days later.  You are going to be far more comfortable at home.  Once home you are  going to sleep, a great deal. The post-surgery time was for me far easier than the weeks before, I hated the pain killers so stopped taking them, and I am definitely at the 'wimp end' of any pain scale.   It was a week before I went out of the house, but I was back to walking 10,000 steps a day within three weeks.  I started post-hospital on a low residue diet, although n hospital my first meal was split pea soup and an omelette with sweetcorn, very low residue! I hated the diet so within a week was having a smaller portion of what the family were having; chili and curry were soon back on the menu.  Yes, some things proved 'challenging' but I found that was true of all foods so took it as it came.  I also took up running to raise funds for Cancer research.  I thought I disliked running, I now know I absolutely detest running with a passion, but have made the ‘Scouse 10k’ an annual event.

The period which you are enduring is by far the worst.  Things DO get better.  In January 18 my thoughts/worries were everywhere, but they soon returned to focusing only on how the Reds were doing.  The waiting pre-op is awful but somehow it passes.  Post- surgery in my opinion is much easier, partly because you will spend so much time asleep.  Now I think in the future if 2018 is mentioned my first thoughts will not be about the diagnosis & surgery, instead they will be those fantastic nights when Liverpool rolled back the years and destroyed Man City & Roma in Europe.  Since surgery we've also traveled widely including SE Asias, S. America & Antarctica and of course Madrid; so don't believe all the post-treatment horror stories.

I am sure you are justifiably worried about what the future holds; Youtube two things: 

1. Jordan Henderson and his dad in Madrid.  Brian had successfully fought throat cancer - but that night he wasn't thinking about that instead it was the utter joy of seeing his lad lift the European cup; it shows you good times return. (I was in the Wanda Metropolitano that night with one of my sons and said a private thank you to the wonderful medical team at the RLUH whose work   meant I was fit and well and there.)
2. The marvellous, marvellous 'Barcelona night' at Anfield which proves anything is possible and remember Mo Salah's iconic T-shirt, "Never give up."

Hope everything goes as well as possible - if there's anything I can help with feel free to ask.  I apologise for the length and random nature of this post.

YNWA

Mike

Just want to wish you all the best and also welcome you to the forum .

I am a carer so can’t reassure you on that level but my mum had a bowel resection right side ascending and it has been quite incredible how well and how quickly she recovered from it . Once it was up and functioning again she rarely had any issues . With regards to her bowel her life is relatively normal . She never has to give it much consideration.

Glad you reached out to the group and wish you a smooth recovery .

take care ,

 Court 

Mike I would just like to say I think it’s great that you and others contribute. Very meaningful .

Court 

Great Scouse humour Mike! And reassuring.

I had my resection in May 2018 and as you say, the few days if apprehension before the op are not great. The op went fine, 4 days in hospital feeling weak but determined, a week  of gentle walks with frequent rests to rebuild strength, then fit to fly and on with treatment plan.  Work through that, then get in with life. Like you I enjoy travel, so Vietnam April 2019, then Taiwan in August. Wonderful place to visit. Now just planning Australia for a few weeks.

The big irritants for me? People telling me II looke fine when I felt very much not so! And people telling me to fight, when all the fight has been knocked out of you. You will work through it in your own way. And at those times when I had to switch from living to eat, to eating to live, I used to freeze a batch of chicken broth I made from bones etc, which was nourishing, tasty and undemanding on digestion etc.

Best of luck as you slow down to go over these speed bumps on life's journey. It is well worth it!

Steve

Thank you very much Mike for your kind words and advice.

I'm a 59 yo women, low risk for this cancer, have always been very fit, good weight, excellent diet,  never eaten smoked foods, hardly any bacon  etc, so just cannot believe my bad luck. No family history either.  Felt so guilty and upset at what I will be putting my husband and daughter through. (as a 3rd  year med. student, however, daughter is so far coping very well and is very positive).

My diagnosis was just as my work shut down for two weeks over the holiday period, and I had plenty of time to visit Google.  Didn't take me long to decide that I should only view reputable sites. (but that still doesn't stop me from looking and relooking even though I know it is not a good idea).   Going back to work after the holidays was helpful in that it took my mind off the pending operation and outcome to a certain extent.  

Not so easy for my husband though. As a retired academic and myself someone who is into research and planning, things are hard. I just want the op. over and to know the results and the next steps.  

Keeping busy is best.  Off to walk the dog on the beach next - that will take care of the next few hours and might be the last time I do that for a while.

Really interested to hear about your diet and the tiredness/sleeping. I've never been a daytime, or good sleeper, so it will be really weird to have no energy & just doze while the body heals.

Again, thank you so very much for your response, much appreciated.  

Cherie

Hi Steve.  So reassuring to read your post, and I will be delighted if I can be like you with 4 days in hospital and back to feeling good not too long after.

Delighted to hear about your trave.  I have a trip to Hawaii booked for my 60th at the end of March (Hawaii 6 0 haha, 12 hour flight for me)  and sure hope I can make it - but it might be just a bit too soon.

Appreciate the bit about your irritants.  Even though i've not started treatment people think i should look sick now and I don't, so they find that odd. Also, I'm feeling great and still going to the gym every second day.(till the op in 2 days) and that seems strange to me, and to others.  But I'm keeping up my usual routines, keeping busy.

Made some chicken broth for the colonscopy fast......sounds like i might need to recreate that!

Many thanks,

Cherie

Hi Cherie,

I too was 1st in my family with cancer despite being the youngest of 4, with my oldest brother 14 years ahead of me. Generally my family live into their 90's and some centenarians. So I thought I was almost immortal. Somehow more of a shock. 

When you look at websites and stats, remember your starting point.unlike some in those stats, you are not an old overweight burger munching, hard drinking smoker, right?!

So your odds are way better.

My oncologist was trained at the world Renowned Mayo clinic in USA and I commend their website and also that of the famous Cleveland,Ohio clinic where my surgeon trained. Both very credible informative sites, and with Google you do have to sort the wheat from the chaff. As you discovered, lots of fake news out there!

Although I lived in Spain for 4 years I never learned the art of siesta, so sadly day time sleeping is hard but I make up for it at night! But things like playing Scrabble online with real people (Aword) was a great relaxing distraction for me.

Try not to worry about 'what you are putting your husband and daughter through' (you are not!), And for once, focus on yourself and your needs. I found people and in particular my partner, wanted to help, and could not do enough for me. The whole journey drew us even closer. 

Get plenty of 'ME' time, and be easy on yourself. A few treats, re-watch favourite movies etc etc.

Best of luck with the op and a great recovery

Steve

Dear Cherie

Like you I neither felt nor looked ill, in fact when people say, "I hear you were 'poorly'," I still correct them with, 'I wasn't ill I had cancer' firstly because it was true and secondly because I hate euphemisms.  Keep going with the exercise, it will help afterwards.

Keep your travel plans open, just make sure you're fully covered with insurance, your daughter will be of use here, as 'medical speak' is very different from standard English; having a wife who's a Dr is useful.  It might be useful to seek an insurer who focus who specialise in medical matters.  Everything will depend on the histology, the results come through about 14 days post-surgery.  If you need chemo it is doubtful you will be allowed to travel.  We were due to fly to Brazil in mid-January of 2017 I never got further than the Liverpool Royal.  I informed all people with whom we had booked and asked my GP for a letter confirming diagnosis.  Every booking was refinded,or cancelled, entirely, even where they stated 'no refunds whatsoever.'  Later in 2017 we flew to Singapore- 16 hrs, and in Jan '18 finally made the trip to S. America & Antarctica.  Just make sure you have imodium to hand.

I wish I'd never had the diagnosis but it happened, I refused then and now to be categorised by it.  I hope all goes as well as possible, keep going with the exercise, I was back to 10,000 steps a day within 3 weeks and  going to Anfield a month to the day of surgery.  Here's hoping a future post begins, 'Aloha from Hawaii.'  Keep the site informed of what happens.

YNWA

Mike