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Author Topic: Feels Hard To Believe  (Read 7139 times)
marcusjsavage
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« on: April 28, 2011, 01:19:19 PM »

Hello,

I am finding it hard to accept I am 'ill' when I don't feel unwell and have hardly any symptoms.
My only symptoms are a tiny bit of blood on the toilet paper some days, and a little tiredness. I believe I am slightly anaemic. I have had a colonoscopy, biopsies showing 'high grade dysplasia' and a CT scan, and am now booked in for an operation on either 4th or 11th May. I need to have an assessment with the anaesthetist first, apparently, which might delay things until the 11th. I have had Crohn's disease for 20 years plus.

I feel fine, and so am bewildered that I am going to walk into hospital feeling great but emerge 10 days or so later in a delicate post-operative state with 8 weeks recovery time needed.
I understand it, intellectually, but it all feels like a theoretical discussion about someone else......and a bad dream.

Anyone else feeling similar? I am struggling to come to terms with this. Any advice/thoughts gratefully received.
Thanks.
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amanda86
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« Reply #1 on: April 28, 2011, 07:50:13 PM »

Firstly, I am sorry to hear of your diagnosis.

My mum was diagnosed in December and I, like you, found it very hard to come to terms with. Being 'only' 24 it seemed hard to believe my mum was so ill, when like you, she looked so well.
That night when I went to sleep I cried myself to sleep and woke up the next morning thinking it was a dream - and like you, had to realise that it was infact reality.

My mum is having major surgery on Tuesday (goes in Monday) amd we are all very nervous.

Please feel free to contact me if you need to chat more xx
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marcusjsavage
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« Reply #2 on: April 30, 2011, 12:16:16 AM »

Thanks, Amanda.
I wish your Mum all the best for Tuesday. I'm having my op on Wednesday.......am also very nervous, which I'm told is natural. But I think a positive attitude to surgery is important and can make one feel stronger, physically. Worth trying to stay upbeat, although it can be hard.
Hope it goes well for her.
Best wishes.
Marcus.
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amanda86
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« Reply #3 on: April 30, 2011, 08:23:33 PM »

Thankyou, will be thinking of you too, when you're well enough let us know how things went Smiley x
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alisonhelen
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« Reply #4 on: April 30, 2011, 09:54:04 PM »

I too on diagnosis in June last year felt well and didn't expect to be diagnosed with cancer, let alone tumors in 2 different places, the rectum and ascending colon. I even wondered if they had the wrong person, were using me as a guinea pig and many more scenarios went through my head. I had my op in September and had a permanent ileostomy fitted, the surgery went well and I left hospital after 9 days feeling relatively well, if a bit sore. I soon got used to my new body part and coped well with the bag, 8 weeks after surgery I went away to Wales for a short break with my husband and had more energy than I'd had in years, climbing to the topmost towers in castles and coming down zip wires at an adventure centre and yes, I'm 58. So, my health had deteriorated over a few years, slowly and I hadn't noticed, I had no symptoms apart from a tiny amount of rectal bleeding which I mistakenly put down to piles. I am now undergoing chemo which has not stopped me doing anything apart from swimming and colouring my hair! So go for your surgery, think positively, thank god you were diagnosed when you felt well, push yourself to get out of bed when they suggest it and if you have an ileostomy or colostomy bag, be determined to take charge of it yourself from the first day, it really is the best thing to do! Good luck with your op and the rest of your cancer journey. Alison
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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/
marcusjsavage
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« Reply #5 on: May 01, 2011, 09:55:50 AM »

Thanks, Alison. Reading your reply gives me real strength and positivity!
I now have a slight cold which I'm desperately trying to lose before Wednesday. Nothing's simple is it?!
Thanks again, Marcus.
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alisonhelen
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« Reply #6 on: May 01, 2011, 11:34:52 AM »

Marcus, if I were you I'd phone your dr's surgery asap and explain you are due surgery soon and get advice about your cold. If your throat is affected, get som Manuka honey, from supermarkets or health food shops, buy the highest strength you can afford, it  has an anti-biotic effect on the throat (and other parts of the body - is also used to treat skin cancer!) Suck it off the spoon and/or make it up hot with fresh lemon juice, if you take it directly off the spoon, try not to eat/drink anythink fror as long as poss afterwards for the best effect! Hope this helps and you get your op on time! Alison
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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/
Hazel
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« Reply #7 on: May 01, 2011, 01:01:21 PM »

Hi Alison and All

I have felt the same as you since being diagnosed, although i was in incredible pain initially because of the blocked bowel, i still did'nt feel like i was ill. I had my op very quickly and as you say one day i was sitting up in bed feeling a  bit of a fraud and the next with tubes here and there and not able to walk more than a few steps. As i was reasonably healthy i healed reasonably quickly, it was compounded by my weight loss which was a good thing in my case, so everyone when i was up and about kept telling me how well i looked!
When i see my oncologist now at my second round of chemo three years later, when he asks how i am i say i was fine untill you prescribed me chemo! I was! i haven't been symptomatic at all.
I am still working though my chemo but haven't got the interest in some things that i had before, i sometimes think i have more important things to worry about, i am fighting for my life! I have deadlines to meet which i am not putting the effort into and feeling very guilty as a result, i think because i look so well i am still getting pressured by my boss at times to get things done. It's a very odd situation to be in as i equally don't want to use my 'illness' as an excuse so i just carry on as normal. It's weird it's a catch 22 situation because although i sometimes think give me a break i don't say it, infact most of the time i am doing everything myself despite the offers of help from friends and neighbours as i don't like to feel that i need or want any help.
Marcus i hope it all goes well, i had four days to get used to the idea of surgery, i had faith in my doc and just kept telling myself, i go to sleep i wake up! that is exactly what happened in essence. Pain relief will help you feel ok too.
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
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Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
marcusjsavage
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« Reply #8 on: May 04, 2011, 05:59:30 PM »

Hazel, thanks for your good wishes.

I arrived today at the hospital, bowel fully 'prepared' (joy) - got fully ready to find that my op was cancelled due to lack of beds and postponed until next week.....a roller coaster ride!

One thing though - I was given six cartons or NUTRICIA PRE OP to drink (4 yesterday) and 2 this morning before the alleged surgery - it really made me feel fine and not wiped out by yesterday's Picolax and no food regime - would definitely recommend. Here's to next week! Marcus.
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alisonhelen
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« Reply #9 on: May 04, 2011, 06:55:37 PM »

Oh Marcus that's bad, I would have hated it! You get yourself all geared up then wham..... what a roller coaster ride you've had. Good luck for next week, I will keep my fingers crossed for you that everything goes smoothly! Alison
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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/
LiemVuNguyen
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« Reply #10 on: May 09, 2011, 04:08:11 PM »

Hi Marcus,

I know exactly what you are going throught. I am 30 yrs of age and was diagnosed with bowel (lower rectum) cancer just two days before christmas last year. Can you imagine me breaking the news after christmas dinner?? I was at the time working interstate, so i didn't want to break the bad news throught a phone call. I am due for surgery in 1 weeks time and will have a permanent colostomy bag on me. To make the matters worst, the tumor is on the boderline of my prostate. Instead of me having a keyhole surgery, i'll be having a open surgery so the surgeons can make the right decision whether to keep my prostate or remove the whole lot. This will mean i might have an extra surprise bag when i wake up. At first i thought it was all a dream, but reality hit me hard when the results came back positive for cancer. To find out at the age of 30, fit and heathy that you have bowel cancer was like nothing i can discribe. All I can say to you is, i am very lucky to have the support of my wife and family around me. Don't keep this to yourself, your family and friends will always be there to support you if you are open about it. The surgery is the easy part for me, it's the lifestyle change afterwards that gonna be hard. Hey!! who doesn't want a challenge in life right? All the best to you, don't forget to stay positive and strong both mentally and physically. Regards Liem
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marcusjsavage
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« Reply #11 on: May 09, 2011, 06:00:26 PM »

Hi Liem,

Thanks for your message. First of all - good luck for a week's time and your op. It's a big step to your recovery.
I agree that walking into hospital feeling 'fine' and emerging with a colostomy bag will be hard to adjust to - I'm am told that in my case it's not certain whether I'll need one or not - but it's still an added stress apart from the illness itself......you have my very best wishes.

However, you sound so positive despite your diagnosis and its timing. Everyone says that a positive attitude is SO important. So well done.....

You're right - having the support of one's partner and family is a source of great strength, although I feel so guilty about putting my wife through all this - she has done nothing to deserve it and it breaks my heart to know she is worrying. Just wish it wasn't the case, but will be glad when my operation is done and I feel we can start going forward rather than being in limbo. Six weeks in my case, due to various delays, although I understand that for some other people it can be far worse. The time between being diagnosed and treatment actually starting feels weird, doesn't it? A sort of un-real no man's land, when the only real proof you have of being so ill is test results on a computer screen.....

I'm taking the Picolax again tomorrow and then - here goes! (Hopefully my op won't be cancelled this time.....)

All the best to you!

Marcus.
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TFW
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« Reply #12 on: May 09, 2011, 07:24:05 PM »

Dear Marcus
I am sorry to hear about your diagnosis and also the problems that you have been having with surgery being cancelled.
I know exactly how you are feeling. I was originally diagnosed with Bowel cancer in 2008 when I was 32. I had surgery and had six months of chemo as a precautionary measure. I was having regular CT scans and blood tests, all of which came back clear. Then just before Xmas 2010 I had a recurrence of my symptoms (stomach cramps and vomitting). To cut a long story short I was told in March 2011 that my bowel cancer had returned in my pelvis and other hot spots in my abdomen area, including my right kidney and my large colon. I have since had further surgery and am currently undergoing chemo. I have also got an ileostomy bag,which is temporary.
Other than a recurrence of my symptoms (which were not as regular as before) I felt well and I was getting compliments from people as to how well I was looking!
When I was told I would need surgery this time round I was given 4 days notice! Both my partner and I had to get my head round this quickly as I was still at work and I have 2 young boys at home. So many questions and worries were running through my head for eg, how much do I tell my children?
Surgery went well and I was out of hospital after 7 days. Ileostomy bag has taken time to get used to and if I am being completely honest, I am not 100% used to it but definitely getting there.
I have to say that the support from my family and friends has been paramount to my recovery and most importantly my partner has been a vital part - without him, my journey so far would have been much much harder. He has been my calm when I have been frantic with worry and vice versa. We have talked a lot and had many moments when we just break down and cry but these are times that have definitely been needed I think for the sanity of us both!
I agree with Hazel in that it is a very odd situation to be in as I equally don't want to use my 'illness' as an excuse and so I just carry on as normal as I can. I have decided to stay off work this time round with chemo and had lots of support from family but its a catch 22 situation because most of the time I want to do everything myself despite the offers of help from family as I don't like to feel that I need or want any help and want to have an element of control over certain aspects of my life. At the same I know that I need to take things slowly and not push myself too much.
Marcus I really hope that it all goes well tomorrow. I had complete faith in my surgeon and just telling myself that this is just the first step towards dealing with this. Do think positively, stay strong mentally and physically and I wish you the very best. Do keep us posted when you are ready.
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suzieQ
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« Reply #13 on: May 09, 2011, 09:09:01 PM »

Hi Marcus

I was in your position 10 months ago. I was diagnosed in May 2010 with grade 2 adenocarcinoma and have some idea of how you must be feeling. I had a hemicolectomy at the end of June and was at my daughters wedding the first week in August, feeling great. You couldn't keep me off the dance floor!  People talk about battling cancer, for me it was an unwelcome guest that was removed, it took a little while longer to get rid of its possessions! I had 6 months oral chemo which finished 6 weeks ago and apart from feeling a bit tired in the evenings, I am back to normal. I have felt positive all along, and was relieved to see my surgeon last week with the results from my last CT scan showing all clear. 

My husband has been a great support but I have spread the load to friends, not longstanding friends, though they have been supportive too, but people in an exercise group that I attend who have and still are very understanding and supportive. I have been able to talk about my cancer and it's effects to anyone who asks, and I am sure this has aided my recovery. I shall follow your recovery with interest Marcus.  Good Luck!
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amanda86
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« Reply #14 on: May 13, 2011, 09:05:03 PM »

mum had her sugergy 10 days ago and is doing well. she has a permenant colostomy and was in surgery for 10 hours - you will feel rough after and need building up - but surgeon said she is now totally cancer free and wont need chemo - its deffo worth the worry of the past few months - you will be fine xx
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