Share |
Pages: [1] 2 3 4
  Print  
Author Topic: In a bit of a spin  (Read 6280 times)
jobo
Newbie
*
Posts: 29


« on: January 25, 2012, 08:53:14 PM »

Hi all

I had a colonoscopy last Thursday for some rectal bleeding, followed by a CT scan when the dr found a tumour.  Results from the biopsy are that it is malignant but CT scan was clear.  I spent yesterday celebrating the fact that it isn't anywhere else and was so relieved.

However, today I am on a downer. 

I am 39, married to a wonderful husband, with 3 daughters, aged 17, 14 and 9. They are very upset but seem to be coping well.  We are being as transparent as possible (with the older two) without scaring them.

I am meeting with my Dr tomorrow afternoon for a pre-op check and going in for a bowel resection on Monday.  It's been very quick and I can't quite come to terms with the fact that I have "bowel cancer".

I have no idea what to expect.  I've hardly eaten this week after the horrid bowel prep and have lost half a stone - I can't afford to lose anymore but have little appetite.

I have suffered with recurrent severe cystitis so am concerned about having a catheter.  Will ask the Dr tomorrow whether I should take some of my antibiotics prior to the op.

Also don't want an epidural as my lower back/pelvis plays me up from time to time.

I was supposed to be playing the main part in a pantomine this Saturday and Sat 4th Feb for which we've been rehearsing for 3 months.  It's been cancelled. I feel awful.

We are also supposed to be going to Florida on 28th March to celebrate my 40th birthday.  Have no travel insurance yet......... This will be 8 weeks after op and I've no idea whether we'll be able to go.

So any advice for the op, tips on recovering afterwards, anything to take to hospital i.e big knickers! what to eat, when you can eat, etc would be really appreciated.
Logged
suze
Volunteer Moderator
Hero Member
****
Posts: 4098


Take Heart.


WWW
« Reply #1 on: January 25, 2012, 10:12:33 PM »

Gawd .. first things first, if there is no local advance and your tumour is contained within your gut you have great prospects for a good recovery. That is the main thing, believe me!

Secondly, it is sad that you wont be doing that panto, but it might be good to focus on that as a channel for your distress, easier than worrying about other stuff, perhaps.

Travel to USA .. shame you didn't already have insurance.  Undecided 

You are very unlikely to be able to buy cover for your cancer condition, so soon after your operation. There are threads about in here re insurance so you will have to research specialist firms to see what you can get, even for non-pre-exisiting might porve hard.

 Medical costs in the USA are eye-watering, so you will have to discuss with your surgeon if there are any risks of possible complications while you are away, cos you probably cannot risk going without cover if there are significant risks ...

I hope it all goes well for you .. you will just need normal hospital stuff, and I recommend mints to ease with wind and nausea you will feel.  Is is going to be keyhole or open? Open surgery takes longer to recover from and I recommend sleeping in a reclining chair when you come home, much easier than straining your wound in your own bed  .. well it helped me!
Logged

Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Hazel
Volunteer Moderator
Hero Member
****
Posts: 2879


Everything is better in Purple!!


« Reply #2 on: January 25, 2012, 11:24:26 PM »

As Suze said your recovery really does depend on the op that you have, but in terms of your holiday itself...Suze is right about insurence it's a bit of a minefield, i was 44 when i had open surgery to remove my tumour, the op was on the 30th Aug and i remember on the 25th Oct my birthday salsa dancing just as i would normally, if you have keyhole the recovery is even quicker.
I didn't want an epidural never had it when i had my three boys and didn't want it then, however the anaesthetist told me it was my choice but then consistently kept telling me how good the epidural would be and i relented. Mine didn't work however and i ended up with a morphine pump anyway which worked fine for me to manage the pain. Epidural's are! a good way of managing the pain but if you really don't want one then the morphine pump is a good enough alternative and stick to your guns.
As Suze said don't worry about the panto and i am betting that those in it with you are far more concerned about you getting better anyway.
As for what you need in hospital, yes the usual stuff a nighty better than pyjama's i guess but if you prefer them it won't matter. I found myself on a ward with no tv and i found it difficult to concentrate on reading, my saving grace was a small pocket radio and earphone that i used to listen to. I didn't have an option but to sleep in my own bed on discharge, but i used lots of pillows and the district nurse can order a special mattress for you if you need it which mine did for me.
In respect of the insurence there is information out there about pre existing and post operative situations and Suze gives good advice about checking with your surgeon.
Oh and big knickers yes! i found they offered a bit of support with the dressings and post op wound.
In terms of what to expect, you go to sleep you wake up there was nothing inbetween for me, i was woozy for the first day but remember mine was open surgery. They get you moving around pretty quickly and that is fine, difficult but ok. You may find bags draining fluid in situ but mine were there only for a few days, and initially a few lines for drips and things going in. Remember to ask loads of questions tomorrow about the surgery and what to expect.
You will need to stop eating before the op and empty the bowel, after my surgery i didn't eat initially and then only soup and icecream until they said i could have some toast, but it may differ for you. I wasn't given dietry advice post op by anyone but i suggest you ask about that before you go home.
Good luck with it on Monday, it maybe a good idea for you to give the nurses a ring before Monday as they would be able to advise you and answeer any questions.
Let us know how you get on! Hazel
Logged

Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
chools
Volunteer Moderator
Hero Member
****
Posts: 2006



WWW
« Reply #3 on: January 26, 2012, 04:13:24 PM »

I'm afraid cancer changes our lives, and often as is your experience the diagnosis can be sudden and unexpected.

Keep on the high that you had yesterday, that your cancer is seemingly contained and that it can be treated.

It's a nuisance (but no more than that) that you will miss certain events that you had planned, but once you are treated there will be others to look forward to, and it sounds as though you have a loving family who will be supportive.

As for hospital, most people don't sleep very well so remain in a constant state of drowsiness which makes concentration difficult, so light reading material and maybe an iPod if you're into music. Hospital might also have free Wi Fi and allow a laptop if you have one (great way to stay in touch with people). During my last stay I took my smart phone which allowed me to email day and night. Wards are usually hot so thin pyjamas and dressing gowns are good, along with easy to slip on/off slippers. Small holiday size shampoos etc so your soap bag isn't too big. Eye shades and ear plugs for when you want to try and sleep.
Depending on how you feel now try and carry out any jobs you think might need doing at home which you might not be fit to do for awhile post surgery, but I'm sure other members of the family might be of help?

We're all a little different post treatment, so now you've found this forum I would advise you to post any questions you may have here after the op, and try and stay positive, you'll get there!

Kind regards

Chools
Logged

Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community
jobo
Newbie
*
Posts: 29


« Reply #4 on: January 29, 2012, 03:45:30 PM »

Thanks for taking the time to read and reply.  All comments gratefully received!

Well I'm as prepared as I can be for tomorrow. Gulp. Staying positive.  The first hurdle will be when I come round after the anaesthetic as the first thing I'll want to know is whether I've got a bag or not!!  Really hoping not!

And then it's recovering from op and waiting for histology results.

Will report back!

Logged
Chrissy
Jr. Member
**
Posts: 95


« Reply #5 on: January 29, 2012, 04:54:38 PM »

Hi Jobo
Can't add anything to all the good advice you have already received.
Just to say good luck tomorrow,and for your recovery afterwards.
I had a sleeping pill the night before my surgery,the first and only time,and slept really well.
Very best wishes
Mimi
Logged
alisonhelen
Volunteer Moderator
Hero Member
****
Posts: 1519


It's good to be alive!


« Reply #6 on: January 29, 2012, 05:15:38 PM »

Hi and welcome to our forum. of course you are on a downer, you had a reasonable result that the CT was clear and you were probably on a high for a day or two, then you come back down to reality that you have cancer. It happens to all of us, it doesn't get any easier each time you go for that CT scan and have to wait for the results, if it's bad news then naturally you go down, whollop; if it's good news, you are euphoric for a day or two then you come back down to earth that you still have cancer and feel guilty that perhaps although you have been given good news or even the all clear, there were other people in that waiting room or friends you have made on the ward/through chemo/radiation/on the forum/twitter that don't get the same news, so it's natural, you WILL get over it especially if you don't dwell on it, keep yourself active in whatever way you choose and talk about it to someone, get it out of your system, start to write a blog, that can be very cathartic.

The others have covered most other things, post op I would invest in 'Sloggi knickers' if you have a 'bag'. I have an ileostomy and my stoma nurse at the time told me to invest in some and I've never looked back, they hold the bag in place, so am never really aware of it when dressed, they help prevent hernias and they prevent you having a 'line' that shows under your clothing! At home make sure you have plenty of pillows to let you lie in bed in any angle you want, helps to bend your knees too if you put a couple under, therefore reducing the 'pull' on stitches or clips.

Best wishes for Monday, I'm sure we will all be thinking of you and come back on here when you're ready to report back!

Alison
Logged

Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
jobo
Newbie
*
Posts: 29


« Reply #7 on: January 30, 2012, 10:35:17 PM »

Hello, I'm Jo's husband, James. Thought I'd login (guess her password) and pass on an update.
Jo had her resection today. It went perfectly. She was very constipated before the op and the enema (is that how you spell it) worked rather slowly. The theatre was waiting for her and she was not empty. But eventually she was empty enough to proceed.
She had keyhole surgery with just three cuts that I can see. two on her right and one larger one on her belly button.
The surgery went "as well as it possibly could have" according to the surgeon Mr Goede. He was wonderful not just in skill but also in making you feel like you were his only patient, ever. We all had a bit of red eye moment when my wife told him how wonderful he is as a person.
About 12 inches of bowel was removed and there was a concern about reattachment as it was quite low. But there was enough and she has "a nice long intestine" and he is confident that it has rettached very nicely, first try too.
She has little to no pain from the Op but has awful back ache. Possibly due to her cycle due to having to stop her contraception for the op.
She has no spinal or epidural but does have a morphine drip. This is helping her to sleep but not having any effect on the pain.
She was later fitted with a paracetamol drip too. And will later tonight be given diclaphenac (excuse spelling).

She will be encouraged to eat (as normal) ASAP and the days of icecream only are long gone. They want to get your bowel working again ASAP as it has more chance of getting fully functional if there is little delay.

They will be removing her lines and getting her out of bed tomorrow.

He confirmed that the tumour has not penetrated outside the bowel and has been totally removed.
I am over the moon. It is about the size of a golf ball.
We just need the result of the lymph node tests now to see if chemotherapy is needed. If they are clear then she is seen as being cured.

I was very worried before the op. Largely due to the horror stories on the internet, including on here actually. But anybody else in this situation. Please hear this. There is hope. There are many many success stories. Your journey is unique, the stats are largely irrelevant. Be positive and surround yourself with positive people.

Logged
suze
Volunteer Moderator
Hero Member
****
Posts: 4098


Take Heart.


WWW
« Reply #8 on: January 31, 2012, 09:10:22 AM »

Thanks for letting us know.

It is great news that she has had key-hole surgery, so much easier to recover from than the full open type ..

It is also excellent that her tumour shows no signs of local advance, and you can realistically expect to call this a cure .. I think it is great for you all. 

Send our love to your wife when you see her!


 Kiss
Logged

Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Hazel
Volunteer Moderator
Hero Member
****
Posts: 2879


Everything is better in Purple!!


« Reply #9 on: January 31, 2012, 11:57:38 AM »

Very pleased that Jo has had a successful operation and outcome. Yes you are right this is a very individual journey and there are often great outcomes, we hear about them but not as often maybe as the more problematic ones, it is difficult not to worry visitors to the site sometimes with information but it is also useful to know the possibilities too just in case.
Here's hoping that Jo has a speedy recovery and many thanks for updating us.
Logged

Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
jobo
Newbie
*
Posts: 29


« Reply #10 on: February 02, 2012, 11:56:04 PM »

Thanks for your messages. James here again. Jo was a bit down today.Three days after the Op. She is now feeling very sore and in pain and is feeling down. I suspect this is also due to her being so tired (I always feel down when tired) but she has also been remarkable. Already had all tubes removed, walks to the loo, had a shower. She amazes me. I'm sure there will be many up and down days to come. It is odd coming to terms with a diagnosis of cancer.

It has been a strange journey so far. I hope that this is the last mountain and that the lymphs are clear. It has forced us to have had those conversations that you just don't ever expect to have. Those ones that start 'if I die'. It has also been a very positive experience too. We have discovered many people who are friends (or friends of friends) who have had the same of similar Ops. Shocking. And they have all been successful without exception. Some have required a short term bag, some long term but most have not needed one. It has been very encouraging.

Another positive is that our family have become so close as have Jo and I. It really makes you stop and think and realize what matters in life. I hope we can keep that forever.

A lady came into the ward today who was having her bag removed after several months. Her 'operation' was very quick and she was on the ward and walking around the same day. She was given the opportunity to go home just the day after but has decided to stay in for 1 more day to make sure everything is working. I was amazed at how quickly this was dealt with.  She had had a resection months ago and also chemotherapy.

Jo is probably going to come home tomorrow so that will be only 4 nights in hospital. I am amazed.

I hope you all have good news and remain positive through your own personal walks.
Logged
Hazel
Volunteer Moderator
Hero Member
****
Posts: 2879


Everything is better in Purple!!


« Reply #11 on: February 03, 2012, 12:48:42 AM »

Thanks for the update i am sorry Jo isn't feeling so good today but yes you are right tiredness gets to you and you are in limbo land waiting for the results of the biopsy and i think most of us here relate to how difficult that is.
It just shows you how much better Keyhole surgery can be i had to wait two weeks before being able to leave and it was still another 2 weeks after that before i felt more myself physically.
It is good to hear that although it is a terrible time that it has bought you all closer, there's nothing like cancer for bringing things into stark contrast!
Take Care and please keep updating Hazel
Logged

Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
jobo
Newbie
*
Posts: 29


« Reply #12 on: February 04, 2012, 10:06:17 PM »

Well I'm back home!  Lovely to be home but I feel as though because I'm home I should be back to normal, which of course I'm not! 

I feel very uncomfortable.  When standing my tummy sticks out like a pot bellied pig and is really uncomfortable.  Also feel like my lungs can't expand fully when I'm standing. Am not doing much standing but trying to walk around a little to get my bowel working!  Of course some of the feeling of fullness is from the swelling from the surgery but have been eating since Tuesday and only managed one small bowel movement yesterday (Friday) after which they let me leave the hospital! 

There is such conflicting advice about what you can and can't eat so I'm just eating what I fancy really, though can't eat very much.  Am drinking lots of water and peppermint tea.

James has just gone out to Tesco in the snow to buy me some tinned prunes!  The fuller I feel and the longer it is before I "go" makes me worry that the pressure in the colon where the seal is will be too great.......

I know it's early days and I know the morphine pump I had on Monday can have an effect on the bowel but it's saturday now!

Any advice/experience you can share???
Logged
Hazel
Volunteer Moderator
Hero Member
****
Posts: 2879


Everything is better in Purple!!


« Reply #13 on: February 04, 2012, 11:49:24 PM »

My bowel didn't get moving for a while, but then i was starved near enough for two to three weeks. It sounds as if you are doing just the right thing with the prunes tea and water to be honest and moving around. The keyhole surgery makes such! a difference.
I wouldn't worry,just carry on as you are and everything will get moving when it is ready. I didn't have particular advice about what to eat once i left the hospital and had to make my own way with things. I did pass a proper motion in a few days which was very uncomfortable for me mainly because i had open surgery, not because of the bowel itself.
It is good to have you back on the forum and it sounds as if you have great support from James, let us know how you get on and keep warm!
Logged

Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
jellybean
Newbie
*
Posts: 33

http://mychemojournal.blogspot.com/


WWW
« Reply #14 on: February 05, 2012, 12:50:42 PM »

hi hobo and james...i just read the thread and sensed all your anxiety between the lines.... i was glad that it has all gone off as well as can be expected....good luck for a full recovery....kind regards....jellybean
Logged

jellybean

''i'm not frightened of dying; i just don't want to be there when it happens''
Pages: [1] 2 3 4
  Print  
 
Jump to: