Strange moments of sadness: Hi there... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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Strange moments of sadness

MarkieJ profile image
55 Replies

Hi there, my name is Mark and I am 51 years old. I've never smoked and rarely drink and I'm fit and healthy, except on 17th August I was diagnosed with OC.

I'm a positive person and have taken 3 shots of chemo prior to a proposed Ivor Lewis on 8th Jan in Southampton.

I've never been ill and don't handle sickness and illness, in anybody, including myself and people tell me that I'm very positive etc.

All this would be fine except I sit awake at nights (2.23am now) and I get very down. My long term girlfriend (now my wife) is so worried about me and losing what we have that I always put on a brave face but sometimes, like now, I feel incredibly sad and down. My prognosis is good and I feel lucky to be having the op soon but at times I'm very scared.

Bizarrely it's because I don't know anybody on this site that I have taken to writing something now. You all seem like such good people and I'm genuinely inspire by what I have read this evening/morning.

So even if one one replies, know that you all have already helped me!

Mark

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patchworker profile image
patchworker

Hi Mark,

You wouldn't be human if you didn't feel sad and down. It's a very big thing to be told you have cancer, and our cancer is especially difficult. You're lucky you can have the surgery, that gives you the best possible chance.

Of course you're nervous, but all you have to do is sign the form and let the surgeon do all the work. When you wake from the op., things will be different, you'll have to learn how to deal with your new plumbing, but it's do-able, we've all done it. You're young and healthy, you'll be fine.

It's almost 6 years since I was told I had OC, it was new year's eve, and new year's eve has never been quite the same since! So I'm afraid Christmas will probably never be the same again for you. But that's a small problem.

If you're wondering why I'm awake at this time, it's not because I'm sad, I'm very happy. My granddaughter has been in labour all night, and I've just been told she has a baby boy, 8lb 10oz. Wonderful!

I'm going to try to sleep now, I hope you get some sleep.

MarkieJ profile image
MarkieJ in reply to patchworker

Hi Patchworker, thanks for your lovely reply. Yeah funny how the day you get diagnosed sticks inextricably in your memory isn't it.

I'm a happy guy, a funny guy, I'm the one that always makes people laugh and I'll continue to do that.

I have loads to look forward too with an amazing wife and a 16 year old son I'm incredibly proud of. I don't really understand why I get sad cos I DO feel lucky to be alive and in with a very good chance of surviving this episode.

I guess I'm a very impatient patient and I just want to get back on with the rest of my life as quick as possible. I kid myself that the op is on Friday the 8th and that by the following weekend I'll be at home and probably working ( I work for myself) but in reality, from what I've read, I'm being a 'tad' optimistic!!!

I want to be as normal as possible as quick as possible and I see that my frustrations and the actual reality of the situation is maybe the bit that gets me down and makes me sad.

I feel amazingly fortunate that I've had 20+ replies on this site, every single one being brilliant and I hope to continue to talk to great, supportive people like yourself some more.

Thank you very much for your time and support PW, very much appreciated

Mark

patchworker profile image
patchworker in reply to MarkieJ

Mark, you worry me with your dreams of a quick recovery from the surgery. You, like many before you, think if you work very hard, try very hard, you'll get better quickly. It doesn't usually work that way. Your body has to have time to get used to all the changes. And that is much more complicated than you think. If you expect too much, you'll get depressed at what seems like a lack of progress.

We all have slightly different surgery, depending on the surgeon, and what he finds inside you. And we all recover at different rates. But please be prepared for it to be many months before you feel well enough to work.

Sorry to have to say that.

MarkieJ profile image
MarkieJ in reply to patchworker

Hi Patchworker

Yes, my main objective is clearly going to be accepting my capabilities and coming to terms and accepting my frustrations. But even in the last week I'm so glad that I've spoken to people like yourself that are explaining what the real world will have in store for me. It's already grounded me and made me realise I'm not going to breeze through and that's a good thing to find out now rather than get terribly disappointed with myself come the end of January. So yes, thanks for your honesty, it all helps.

Mark

brucemillar profile image
brucemillar

Mark

You are not alone. I was diagnosed 18 months ago, aged 57. Had the op and chemo and remain Cancer free. The doubt/sadness is never far away. I think this whole thing steals confidence. Everyday I get better and stronger and my confidence grows as I start to believe that I will survive. Good luck. You will get better and these moments will fade.

Bruce.

DaveChuter profile image
DaveChuter

Hi Mark,

I'm 9 years out but exactly how you feel as went through the same thing soon after surgery myself, I talked to my GP who suggested a sleeping pill to take once in while just to ensure that I could get a good nights sleep to catch up, this worked well for me, taking one each Fri and Sat evening and after a couple of months or so my sleep pattern improved overall so stopped taking them.

Talking to other patients it is a common problem occurring at any time in the first couple of years.

Cause unknown as no research I'm aware of, could be some form of depression but I was like you in being very positive on the outside to others but maybe not on the inside?

Could also be physical as our bodies have changed internally and may be just a part of the recovery process or an after effect of the chemo.

It will pass,

do have a chat with your GP about it.

Do you go to the support group in Southampton, organised by Lorraine Sutton one of the CNS's, I find just talking to other patients is very helpful.

Are you aware of the OPA, opa.org.uk

Happy to have a chat, number below.

Kind regards,

Dave C

07734 394263

MarkieJ profile image
MarkieJ in reply to DaveChuter

Hi Dave

Thanks ever so for your reply

Because we live in Jersey I guess it's difficult to get to anywhere in the UK to meet up with fellow patients. Yes I'm coming to Southampton for my op but 7-10 days later I guess I'll be on my way back to Jersey.

But yes I already feel substantially better sharing my thoughts with you guys, mainly because I know you have all been there/done that. My brother has been a rock, my wife amazing in the circumstances but all you guys have experienced what I'm going through and there's an instant affinity to that because I hope that I will get many things explained to me and support given to me by people that have trodden the exact same road.

Appreciate greatly your answer and support

Mark

haward profile image
haward

Hi Mark. It is scary. I had my op in May 2013 and it is a big op so there's nothing wrong in being scared. When the anaesthetist asked me how I was at 0630 on May 13th 2013 I said "I'm frightened ". You can call the OPA helpline and we'll find someone for you to talk to. That's 01217049860. I don't know whether there's a group meeting before your op - have a look at the website. I hope it all goes well and come and see us after the op.

Regards

Haward

Annde70 profile image
Annde70

Mark I have not been down this route but can imagine how frightened you must be. It is also a huge shock to be given such a diagnosis. Take confidence from those that have been there before and survived, but do not shut your wife out of this. Tell her how you are feeling, I know it is a cliche but talking about it can help, and truth be told, she is probably feeling almost as scared as you are

MarkieJ profile image
MarkieJ in reply to Annde70

Hi Annde

Strange isn't it. I appreciate that I have put my wife through purgatory in the last 3 months whilst she, in return, has been a genuine Angel. I sat up the other night writing my thoughts on this site and then the following morning I almost felt guilty of being unfaithful to her cos I had cut her out and gone to another source for help. I've righted that wrong and 'come clean' to her and spoken very openly about how I feel and how difficult it is talking to her about the negative side of my condition and she is pleased for me that I have already found a certain amount of solace in this site. I feel better and I know she also feels better because if that too

Thanks for your kind words

Mark

philsayer profile image
philsayer

We are all actors on a stage, being strong and brave for ourselves, and for those around us. But it's tiring; we need to take off the costume and make-up now and again and simply be our real selves. You've every right to feel depressed, angry and fearful, and it's important to deal healthily with those feelings - usually, that includes letting tears flow. Culturally, "men don't cry," but all research indicates we most certainly should - it's nature's own anti-depressant. Crying isn't weakness - it's strength. Putting on a brave face isn't dealing with the issues - it's avoiding them. Early waking with "the blues" is quite common, and it can be a good time to get up, sip a hot drink, and explore your feelings. I've cried myself back to sleep numerous times on the kitchen sofa, and nothing beats the sound, deep sleep that follows a good howl... Ignore anyone who tells you to "stay brave." You ARE brave - but it's okay to run out of bravery every now and then.

Final word regarding the procedure itself. My fear was dying during the op. It is, after all, a long, complex business, often cited to be the longest elective surgical procedure of the lot. (Anything longer than an Ivor Lewis probably means you've been hit by a bus.) The good news is that you are extremely unlikely to die during or shortly after surgery. The fact that you're getting the op means your team believes you're able to handle it, and you'll wake up with more than a dozen wires, tubes and electrodes, constantly monitoring every bodily function. The slightest deviation and they'll come running...

Good luck to you. I admire your honesty.

Phil

MarkieJ profile image
MarkieJ in reply to philsayer

Dear Phil

You scared me.....but in a good way!!! Just the way you discuss the crying, the potential to actually die, the impending surgery and how we are 'supposed' to act were all exceptionally close to the bone and EXACTLY how I have been feeling. So really a bit scary, but has made me feel more normal even if you are the only person identical to me, and yet I suspect there's more of us/you/me's around, especially on this site.

Thanks Phil, you've made me realise I'm not alone and that crying, honesty and vulnerability are actually all positive things rather than things to bury

Mark

Joseph84 profile image
Joseph84

Hi Mark, I was only 45 years old when I had my Ivor Lewis that was 22 years ago, so good luck.

mulligan profile image
mulligan

Hello Mark. I had the same experience as you are having and being self employed on top made the whole experience dreadful

However that was 22 years ago be as positive as you can don't let the fear get a grip of you because it can drag you down

Keep your chin up even if your belly is on the ground

So here I am now 71 an OAP

enjoying the outcome

Keep cheerful positive no fretting it will all work out for you

Best wishes. Happy Xmas John

MarkieJ profile image
MarkieJ in reply to mulligan

Hi John

Yes I work for myself too. Ironically I've been running a health food supplement company for over a year now and have preaching to people how to look after themselves better so that they don't catch any bad diseases or conditions. Oh the irony!!

I'm 51 and if someone offered me 71 today I'd take it, so thanks for giving me much to look forward too.

Mark

And a very Merry Christmas to you too

I think it's such a huge shock .You're going along ok ,bit of heartburn etc ,and suddenly the rug is pulled out from under your feet .And then you're facing an op and what feels like freefall into the unknown .

Makes you doubt everything .And makes you feel that you have no control over anything .

Plus you're putting on a good show for everyone else .

I found the hospital experience fine ,lots of drugs ,no pain ,excellent care . I've recovered well and haven't had all the problems that you come across on line .People do tend to post if something amiss - not if everything ok .

One foot in front of another mate . You'll get there and we're all behind you .

PS Have you considered trip to GP for antidepressants or sleeping tablets ? They do help your body cope with the shock you're going through .

MarkieJ profile image
MarkieJ in reply to wherethewindblows

Hi WTWBs

I've kinda steered clear of my GP basically because I'm already fed up of taking pills. 20 a day every day during chemo was enough to put me off taking even a multivitamin ever again! If needs much, I'll try not to be stubborn but for now I'm trying to get through on good old fashioned positive thinking.

Which is made far easier after hearing from people like you!

Many thanks

Mark

chrisrob profile image
chrisrob

Hi Mark,

Sorry to hear of your news.

I hope your operation goes well in January. I have every optimism. Southampton has some of the best surgeons for this procedure.

Mentalmicky6 profile image
Mentalmicky6 in reply to chrisrob

Mark you must walk into that hospital on the 8th, fearless with your chin up and let the brilliant surgeons do the worrying . I had my Ivor Lewis on the 30th Oct 2012, I don't remember any real pain afterwards, it can take a year to recover but it didn't stop me going back to work not long after my post operative chemo as a self employed plumber 8 months later, sometimes lifting heavy radiators etc at the age of 65 and I'm still working and playing golf with no plans to retire.

I always feel my best when I'm doing something and not sitting around

MarkieJ profile image
MarkieJ in reply to Mentalmicky6

Hi Micky

Thanks for your note.

Yes, as mentioned before, I don't do being sick, never have, so I'm quite lucky in that respect.

I'm quite bullish and positive about my prospects, just want to get in and out of hospital as quick as possible, at their advice obviously.

Yes, as the turn of the New Year has passed I'm beginning to think about it more often and am wondering how I will feel afterwards.

I work for myself (largely at a desk) and also am fairly active and play golf etc, so it's just the unknown of when i can get back to 'normality' really.

But thank you for your input, it helps greatly, especially as the big day gets ever nearer.

Ironically , exactly this time next week it will all be over and I'll likely be in ITU....time really does fly when you are having a good time doesn't it!

Thanks again

Mark

Mark4 profile image
Mark4

Mark I've read the replies and have been there myself. The replies all make sense and of course you will feel down I did. If the team is optimistic they will be for a reason, and operability is a real result as you will have realised. I would only add that you are healthy and fit and that is brilliant as regards the operation. I had mine summer 2014 and left hospital a week later carrying my suitcase to the train. So you should be fine and the chemo will be doing its work. Winston Churchill said. " I've always been an optimist I've never seen the point of being anything else". Well it's easy to say and hard to do but worth thinking about. Good luck and stay fit.

MarkieJ profile image
MarkieJ in reply to Mark4

Hi Mark

Up to very recently I believed I would be up within a week after the op, walking round the Jersey lanes after 2 weeks, out on my bike after 3 and planning a charity kayak event after a couple of months and yet I determine that the op is far bigger than I imagine?

I haven't the time or inclination to let this monster hold me back but I'm being made aware from posts on this thread that the op, or should I say recovery from it, is a far longer road than I once first thought. I really want to get home after a week and climb back on the horse. Not to quickly to be silly and put myself back, but quick enough that I can start to feel 'normal' again.

You have given me all the encouragement I need, many thanks

Mark Too!

Mark4 profile image
Mark4 in reply to MarkieJ

good luck post again if you want more information or email me. You will be weak after the operation of course you will but you will be on the right road and that is most of what we can hope for in any situation! mark too.

Makulit profile image
Makulit

Hi Mark,

I was working as manager of the Water Sports Centre for Shangri-La Resort in Philippines and an active Diving Instructor when I was diagnosed one month after my 46th Birthday, last April 11th. I had a very active lifestyle, went to the gym regularly and had a very healthy diet, though I did drink too much.

I had the operation on 24th September last year (14 months ago) in Gloucester. I can't remember exactly how soon after the op I hit the gym but I think it was about six weeks. At first I couldn't do very much but with the help of my personal trainer built my strength incredibly fast. You can get a GP referral to your local Leisure Centre which should include a PT for first nine weeks or so.

Five months after my op I headed back to the island I was living when diagnosed and on the morning of 10th March, my birthday, I went diving with an old friend.

I sleep on an incline and take Lanzoprazole every day but apart from that my life is pretty much normal. Yesterday I went swimming and smashed my all time record, 1km in 25 mins. Since my illness I have also smashed my all time rowing record and regularly run 5km, I'm probably fitter now than I have ever been.

I know what you are going through now Mark, it is frightening and sometimes you can't help thinking the worst which is natural. The recovery period is tough but will pass quickly, aided by some great codiene and morphine by the way, I watched the whole box set of Breaking Bad in bed!!!!!!

I hope my message will go some way to helping you see the light at the end of the tunnel. Life after cancer is a different experience. I am more positive than ever, more loving, more giving, more appreciative of being here and certainly enjoying my time on this planet more than ever before.

I also strongly recommend looking up your nearest Maggie's Centre, I did a meditation course, a creative writing course and still have regular visits with the resident psychologist there who has become a good friend.

I have so much more to say to you but this is not the time or place. PM me on my yahoo below. I'll send you my FB details so you can see all the crazy stuff I have been up to since my op, you'll be amazed. Stay strong Mark, there's so much to look forward to.

Happy Xmas,

Nick.

nchakmakjian@yahoo.com

MarkieJ profile image
MarkieJ in reply to Makulit

Hiya Nick

First things first.....have you any jobs going at the Shangri-La in the Philippines doing snorkelling as that sounds like my idea of heaven!!!???

I've never really been a big drinker and albeit I was overweight, I never called myself obese. I'm about 6 foot 5 and have been described as larger than life and our vice is holidays.

We've neither of us ever smoked, or had a bad lifestyle and our passion has always been travel and food.

Yes it's upsetting that I won't be able to eat what I always want, in the quantities that I want but I'm going to fight it every step of the way to ensure we can still travel the world, have weekends away etc etc as that's our real passion and although we've travelled well, we want to travel so much more.

You're right, I already feel more positive about life. I loved my girlfriend to bits and although never wanted to get married (we always joked we were too happy to marry as both of us had grotty marriages before) but she's now my wife and if it's at all possible I love her even more. I feel more. I experience more. I'm definitely more chilled.

So thanks for reminding me that although it's a long road, there are so many treasures in life yet to unlock.

Mark

bigemu profile image
bigemu

Being told you have OC is very frightening, all types of thoughts go through your mind, mostly negative ones. However like you i was diagnosed in 2012 with OC and had the operation in May of that year.

I was very positive outwardly (but often brooded during the night listening to music) the recovery was difficult and I returned to work within 8 weeks although very gently.

Moving forward I have now completed 2 Great North Runs (13.2ml) over 2014/15, looking absolutely great (family and friends views) lost 6 stone and have never been healthier or fitter.

MarkieJ profile image
MarkieJ in reply to bigemu

Hi Bigemu

You are truly an inspiration and have helped kick my backside and realise there is so much to look forward to. And so much charity work that I need to do in the future.

Thanks for your message

Mark

Rose667049 profile image
Rose667049

Hello Mark,

My name is Terry I was diagnosed with OC earlier in the year and I also had three cycles of chemo before the Ivor Lewis procedure which I had on November 9th it is now 6 weeks after the op.

I know exactly what you are going through! My family and I are members of this very supportive organisation the OPA and I have left my telephone number at their Birmingham office 0217049860 if you would like to speak to me directly .

Good Luck,

Terry Jones

MarkieJ profile image
MarkieJ in reply to Rose667049

Hi Terry

So this is all very new to you then and I am you, just 2 months behind?!?

I'm very interested in how you feel, how you coped with the op, how you are coping with the rehab/recovery etc etc so I may well call you if that's ok

Thanks Terry

Mark

Rose667049 profile image
Rose667049 in reply to MarkieJ

Hello Mark,

First a merry Christmas to you and your wife.

Yes you are two months behind me and as I said before I know exactly how you feel and what you are going through.

Please feel free to call me whenever and I would happy to discuss my experience of OC and the Ivor Lewis procedure.

I hope this makes you feel more confident - it is 19.00 on Xmas eve, 6 weeks and 3 days after my IL procedure, I have just come back from the local after enjoying a drink with my lovely wife,daughter and two sons.

When I was diagnosed with Adenocarcenoma on April 29, this year I thought I would not see Xmas .

But here Iam feeling good and positive about my future.

I hope these few words will give you a lot of inspiration and Please feel free to contact me.

Merry Christmas,

Terry

MarkieJ profile image
MarkieJ in reply to Rose667049

Hi Terry

And a very happy Christmas to you.!

Whereas I guessed I would see this Christmas, I didn't know if it would be my last one?!

But now I'm determined that it won't be!

Your messages give me such a lift and I'd love to have a chat. However we had a prebooked holiday to Vermont booked for tomorrow so we are off for 6 days early in the morning. Please email me on markiej64@sky.com and maybe we can touch base while I am sitting gazing at the snow capped mountains??

You and your family have fun this week Terry.

Speak soon I hope

Mark

I think these feelings of sadness are a natural part of the process, because there is a mental / emotional track to travel along as well as a medical / physical one. So recognising how you feel is a really healthy thing, and writing it down in the small hours is quite a good way of finding the words to clarify how you do feel about things. Your wife will also go along an equivalent path.

The confidence and hope of a successful outcome for the treatment is a different thing, but it helps.

There are some friends who will say the right thing; and others who will say spectacularly wrong things, but you will probably end up finding unexpectedly helpful support from people and sources from whom you would never have expected it.

So you and your wife have to try and find ways of supporting each other through this treatment. Being as honest as you can with each other about your sometimes strange and inexplicable feelings is a part of that. Do not expect a black and white snap answer; you have to feel our way through it. But couples do have individually different ways of coping.

I am not sure whether there is a centre like Maggie's or an equivalent at Southampton, but people who go to such places to work out how they feel about things find unexpected benefits and surprise themselves. What you are feeling is very normal.

Deejay_39 profile image
Deejay_39

It is a well practiced Op with good outcomes. In my experience, the Chemo is the worst part of the process but the chemicals improve all the time. Try to think about how fortunate you are to get an early diagnosis and prompt treatment.

MarkieJ profile image
MarkieJ

Hi there

The first thing I have to say is that its flippin difficult writing a reply to all you amazing people with tears flooding down your face!

Its like collectively you guys opened the dam and its all pouring out. However its proving to be incredibly cathartic.

I don't really do letting go, its always me that is the strong one, but I feel like a baby right now.

With all the bad things that go on in the world its easy to get down sometimes but you guys have greatly restored my faith in the human race. I dont know any of you and yet your kindness, compassion, understanding and support has genuinely shocked me and I feel very privileged that you have all taken the time to reply to me. I'm not into Facebook etc, I'm pretty much a private man, hence the attractiveness to write to 'strangers' in the middle of last night to share my fears.

I feel a sham and slightly embarrassed as I've spent the last 4 months explaining to all my friends and family that I feel fine, my outlook is bright, my chemo has worked amazingly well, I'm healthier than I was, I've lost a stone and a half that I always 'wanted' to lose and I just keep repeating to everyone that I feel lucky because there are thousands of people in the world that are so much worse off than me. As many of you have pointed out, I have so much to look forward to. I have an amazing wife and a gorgeous 16 year old son and many many amazing friends and family so I feel somewhat of a fraud whining to you guys.

But as I said last night, know that every single one of you has helped me get back on the horse this morning, wipe my eyes, put on a brave and smiling face and accept that its ok to be fragile, to be scared, to be frightened.

Thank you ALL so much

Mark

P.S. Theres a few of you I may contact directly if thats ok. And thank you for the helpline details/websites/numbers, I feel far from alone today knowing there is so much support around.

paintersteve profile image
paintersteve

Hi Mark , it looks like they have caught your oc in time , as for the op all I remember is 2 nurses prepareing me for surgery and the next minute (or so it seemed ) I was being woke with the words hi Steve you have had your op and all is looking good , it is a big op to get over but reading your posts you seem very positive and that and support from family and friends goes a very long way, go with the flow Mark , take each day as it comes and I'm sure you will be fine , it was 3 and a half years since my op and since then I have started and run my own decorating busness and loving life. even down to having hols abroad 2 or 3 times a year.

guzzirob profile image
guzzirob

Hi, having been in exactly your position last January I can only say stay positive regardless of how down you feel. The op is major, recovery is long and slow, not helped, in my case by another 3 cycles of chemo after the op and now 2 wks into 5wks of radiotherapy. Cancer does take over you life. You say that your prognosis is good.. just think how positive that is.. many others are diagnosed at later stages and don't get the chance that we have to recover.

MarkieJ profile image
MarkieJ in reply to guzzirob

Hi Rob

Yes I feel extremely fortunate that they have caught it early, I have a great prognosis, the chemo I've had so far has already reduced the size of my tumour and I'm lucky that the hospital team feel I'm good to be operated on, so yes I feel lucky to be given such a good chance to fight it

Thanks

Mark

SteveJ profile image
SteveJ

Hi Mark

I cant really add anything to what has been said here, but everything that has been said is true and great advice. You will find on this journey that you are about to embark on is that things will throw you from time to time but the beauty of this site is that there is always sound advice, help, and a shoulder should you ever need it. Good luck with everything and try to stay positive if you can, it's not always easy, look on it as a challenge that's what I did.

Kind Regards

Steve

sallym profile image
sallym

What else can I add to all the comments already been said, except to say what an enormous wall of support will be there behind you. Never did I realise when I started this journey how important that was going to be and still is today. I am just about to start my 22nd year. Wishing you well on your journey, you and your family are not alone Sally

Makulit profile image
Makulit in reply to sallym

Hi Sally,

I hope you don't mind me asking, is this your 22nd year post op and if so how old were you when diagnosed? I was 46 and was told I was very young to have this. I would like to think I can live a normal, healthy life and am so happy to be here but do sometimes wonder about the long term.

Nick.

sallym profile image
sallym in reply to Makulit

Hi Nick,

Yes this is the start of my 22nd year .I was 58yrs old now I have reached 80.

When I was diagnosed, treatment was to be radium, chemotherapy was not effective then, it was piloted about 2yrs later. Fortunately a surgeon decided he would try an operation, the idea being to give me 3 more years. A two month delay because of under funding of intensive care beds was not a good start and was probably the most traumatic time.

The journey has had many unpredictable side effects but life is good. Walking and swimming have played a large part in my recovery.

Apart from an under active thyroid, I am fitter than most people of my age.

I'm looking back now, I have seen my family increase and done many things that I didn't think I would be around to see.

Never can be under estimated the amount of support that has been around over the years.

Best wishes for the beginning of your journey next week Sally

MarkieJ profile image
MarkieJ in reply to sallym

Sally

You are a true inspiration to us all

Support and understanding like yours really is very helpful

Thanks

Mark

Makulit profile image
Makulit in reply to sallym

Thank you Sally. I am sure you and others like you give a huge amount of hope and strength to those of us who are recently diagnosed or post op. I'm happy to be alive and now embarking on the process of trying to rebuild my life. This is both exciting and frightening but we have to live for the present and the future. I wish you all the best for 2016.

Nick X

lilia profile image
lilia

I too was in my early fifties when I was diagnosed never smoked or drank.I am now 9years down the line. I have nights when I can't sleep so I get up have a warm drink do a couple of suduko puzzles and then back to bed. I had one granddaughter when diagnosed and now have a grandson, twin granddaughters and a single granddaughter who I never thought I'd see. Keep thinking positive and all will be well!! Recovery is slow but enjoy the "chill time" and all will be well

Good luck for the new year.

Steve101 profile image
Steve101

Hello Mark

My wife had OC and the op was in May 2013, 18 months now. She is doing really well.

So I can relate to how your wife will be feeling. I was scared and angry. The person I would give my life for had cancer and was facing an enormous operation. I was scared and 'in bits'. My wife was also trying to be strong for me.

Once you have had the Op, although there is a long recovery time, both you and your wife will start to feel better day by day. I know you will both come through this, your love for each other will grow even stronger!

I would encourage you to share access to this site with your lovely wife, it got me through when times were difficult.

If your wife would like to chat to me, I would be happy to.

God bless and big man hugs...............

Steve

MarkieJ profile image
MarkieJ in reply to Steve101

Hi Steve

My oh my your words resonate with me. I'm a tall, big guy who takes everything head on and my wife is slim (and beautiful inside and out) and looks to me to protect her. For me there would only be one thing worse than being diagnosed with cancer, and that's her having been diagnosed. She looks in my eyes when I'm sad and says she would do anything to take it from me but it's actually great that it's me that's got it cos I can fight tougher and dirtier than her.

I find it surreal at times that friends and family are always asking me how I feel and yet I still say it's worse for her and that people should be asking her how she feels. It's so much tougher for the partner, you know.... The one in the background that can't do enough, the one that supports unequivocally, the one that worries, the one that gets overlooked. You Steve, like my lovely wife are saints. Super people doing an amazing job. It's you tenant should be in the spotlight. I'm so pleased your wife got better and I'm happy for you both.

I've shown my wifey the thread and she may well feel like talking to you, as 'the partner'

Thanks so much

Mark

P.S. What the hell, big man hugs back!

Steve101 profile image
Steve101 in reply to MarkieJ

Just let me know if I can help.

Just remember this time next year you will be looking forward to Christmas and feeling good in mind and body.

Steve

Rowland profile image
Rowland

Hi Mark,

I know you have had lots of comments already and I probably don't have much different to say, but I understand completely how you are feeling! I had the chemo and the op in 2012 when I was 49 - my diagnosis was a complete shock for me and my family and friends. Almost 4 years later I am getting ready for another Xmas feeling very blessed to still be here! Life is virtually back to normal apart from eating smaller portions which is great for keeping the weight off! I went through a pretty torrid time following the op, but time is a great healer and the horror does fade. What hasn't faded is how lucky I feel for getting through in one piece and every day is a blessing. It is still difficult for me to open up particularly to my daughter who is now 22, because I never want her to worry too much or know how scared I was of leaving her forever, but I have learnt to enjoy every day and relax more and more as time goes on.

I wish you all the very best for your op - I found my oncologist and surgeon to be the best people ever but all the medical professionals I met were absolutely fantastic and I am sure they will get you through this difficult time!

Best wishes,

Julie

MikeK profile image
MikeK

Hi Mark you will find lots of support on this site. I was diagnosed 3 years ago in December 2012 and had my operation in February 2013 at the age of 62. Like you I was fit and healthy, had never smoked and just had the occasional drink. The period you are in now is probably the worst time as you don't really know what the future holds. Although the surgery is very major there has been great progress achieved with this type of cancer over the past few years and I am sure that your prognosis is good. Post op don't expect to be up and running by the end of January though as it will take a considerable time to regain your strength. Most people say 12/18 months is about normal although much depends on fitness and age etc. There will be challenges ahead but with a positive frame of mind and good family support you will get through. I live a normal life and can do everything which I did before the operation. Currently trying to persuade my wife to let me go on a ski holiday! Good luck!

Mike

gutlesswonder profile image
gutlesswonder

Hello Mark

It's 24 years since my Ivor Lewis and I am still learning - particularly how marvelous the folks on this site are.

I will be in Southampton for January - I would be delighted to meet up, visit you in the General (UCHS) (the foods not bad)(Tim is a great guy), chat by phone, email, whatever you fancy and the same goes for my wife to yours.

Just say the word.

spanner16 profile image
spanner16

Hi Mark,

Like all the other replies say - what you're feeling is completely normal for what you're going through and it's hard, you don't want to 'burden' people close to you with what you're actually feeling because when you do say things like that you see the reaction on their face and the worry and sadness appear so you feel like you have to be strong for them. Have you tried your local Maggies centre? Mine was brilliant for having someone impartial to talk to about precisely what you're going through without fear of reaction.

I'm nearly 3 years post op and generally I'm happy and upbeat but even now every now and then I'm suddenly hit with a huge wave of 'what could be', 'it could come back' and laughably 'oh my gosh I had cancer!' But I let myself feel it for a moment, let myself appreciate what I've been through and then get back to my 'life is for living' mantra and I personally refuse to let this horrid disease take anything more from me than it already has - it doesn't deserve any more of a passing thought of my time - I have so many other amazing things to do instead.

Good luck with the op and as I'm sure you've already gathered - we're all here for you, rooting for you whenever you need us! X

deveretth profile image
deveretth

I have problems eating.

David

deveretth@gmail.com

mirrie profile image
mirrie

I am ten years post op. Before my operation I used to think a lot about what was going to happen, then I began to think positively and I felt much better. After the operation I was determined to get better. I did not want to eat but just closed my eyes and got on with it, within two weeks I was eating normally and have not looked back since. My only problem is acid reflux but I chew a peppermint and it soon goes away. I am 80 years old now and feel well. Please contact OPA and attend your local meetings they are really helpful. Good luck I will be thinking of you.

Mayan profile image
Mayan

Hi Mark Just to wish you luck for tomorrow will be thinking of you Had my op 7 years ago and still remember that feeling of being so very nervous My hubby said I was so very very quiet But here I am 7 years down the line and a very lucky lady Stay positive and take one day at a time slowly does it All rooting for you Mark

MarkieJ profile image
MarkieJ

Hi there everyone

Two months ago I leant on you all because I was scared of what was happening to me, what the IL operation was going to be like, what sort of pain I'd be in, what I'd be able to eat etc etc.

Due to the amazing surgeon and a multitude of amazing nurses offering incredible care in Southampton hospital, I'm here and I'm not going away!!

Yes I may be having a few issues with eating And dumping and yes I'll be having follow up chemo, but the op went "better than we could have ever expected", so says the surgeon, now affectionately known as Superman in my household.

What's apparent to me though is although I get and continue to get amazing support from family and friends, I really can't underestimate the positivity, support, help, encouragement, empathy and multiple best wishes posts that I received.

You guys helped me every step of the way with your Warm, helpful messages and so I'd just say to anyone having a wobbly moment or worried about the future, please do use this website, the support and the people on here are priceless.

Thank you all and I'm very pleased to say that I'm coming through the other side

Best regards

Mark

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