Stephen's Story

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Stephen Farley

I’VE JUST BEEN TOLD……………

 

 

…..that I’ve got cancer!!!!!! How do you react to been told something like that??

Walking out of the hospital that October day was surreal…..”Have I just been told I’ve got a very, very rare cancer??” I hadn’t been given its full name, just that I had an appendaceal tumour that had ruptured! That was in October 2004…. A lot has happened since then….here is my story so far….

 Let’s start at the beginning!! My name is Stephen Farley, I am (at the time) 42 yrs young, and I’ve been married to Sally for 19 years. We have two wonderful children, Niall-16 and Lois-14. We all enjoy living very near the countryside, right on the edge of the North Yorkshire Moors National Park, in the North East of England. Walks around Roseberry Topping, Captain Cooks Monument and across the National Park moors have been a regular feature for me since I was a kid growing up in Gt Ayton. I’ve worked for a living ever since I left school, working both locally and further away from home. As a family we all enjoy motorcycle racing, (watching!!), camping holidays, holidays abroad, (Florida in particular) and the general “outdoor life”.

 

Easter time 2003: I went to see my Dr with pain in my lower right abdomen, and pain into my right groin area. It had been there for some time. “Probably a strain with radiating pain, keep an eye on it and come back if there’s no change or if it gets worse”. This pain/ache came and went, till one night in December I woke up at 3 in the morning with a horrendous pain in my abdomen, it felt like someone was pouring boiling water into my insides!!! I got up and went downstairs, curled up in my favourite armchair while the pain subsided. After 30 minutes it had almost gone, so off I went back to bed. “A few more days at work, and I’m off for four days, I’ll go to the Drs then”.

 The Dr arranged for me to see a specialist and for me to have a CT scan, which meant nearly eight weeks before I had my scan! By now I was “very uncomfortable with a swollen bowel and abdomen. As the scan did not show anything up, the specialist arranged a barium enema,… not the most pleasant of experiences!!! Still nothing showed, so we tried an ultra sound scan, this was on Easter day 2004!!! Alarm bells started going of in my head now…”have you had your appendix removed, I can’t find it”. They told me I’d hear from a surgeon as it looked like my appendix had ruptured or rotted away!!

 I didn’t worry when I didn’t hear anything as I thought “there can’t be much wrong, they would have had me in by now”.

 

September 2004 I received a phone call from Mr Davis’s secretary asking me to come in a.s.a.p to see Mr Davis!! I was told by him that it looked like I had a ruptured appendix and it needed removing …..  NOW basically.

 Two days later I turn up at the ward at 08.45, with Sally, for a “straight forward 20 min operation!!!!” I’m not too nervous and I’m chatting with one or two of the theatre staff that I know (we live in the same village!!).

 Next thing I remember is seeing Sally and we’re heading back to the ward.

 As soon as I’m “more with it” Sally tells me I was in theatre for two and a half hours!!! Mr Davis had “found a ruptured appendix”, and had cleaned my bowel cavity as best as he could.

 Two weeks later I have a follow up visit with Mr Davis……….he tells me he had removed a tumour from my bowel, and that this tumour had ruptured (the “horrendous pain” in Dec!!) and spread mucinous “jelly” inside my bowel cavity. He thinks he’s got it all, and they will keep a close eye on me. I ask him…”you’ve mentioned a tumour, but you didn’t mention cancer, have I got some form of cancer??……”

Mr Davis explains to me…. “tumour tissue, appendix tissue, mucinous samples etc have been sent to histology, we’ll know more when we get results from there, …… …..yes…..it IS a form of cancer”.

Mr Davis went on to explain that he had never seen this “condition”, it’s very, very rare, as in “one in millions……..” His parting words to me that day where……    ………….”We’ll probably be seeing a lot of each other for a lot of years”…………

 

                                         A surreal moment!!!!!!!!!!!!!!!!!!

 

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I decide there and then to “get on with my life”…….Sally and I decided not to tell Niall and Lois, or the rest of our  family and friends, the “extent” of this condition until we new more ourselves………..we also agreed not to “look it up” on the internet, as we both agreed….. misinformation could be frightening………

 

Four weeks later I have a C.T. scan………………….it shows “mucinous deposits” all over my abdomen. I have an out patients appointment with a Professor Wilson and his team, including a specialist cancer nurse!! The Professor tells me that “this jelly has seeded its self onto a lot of my organs inside my bowel cavity”,(these seeds grow into tumours!!!). They explain that the only place to have experience of this rare cancer is either Basingstoke or the U.S.A……………….he’d spoken to a specialist surgeon, Mr Moran, in Basingstoke, and he would be in touch with me direct. The possibilities were further surgery and /or chemotherapy…………

 

 With time to sit and think, I decided that whatever was thrown at me I would see as a “hurdle” to get over……….after all, I’m not the only person with cancer………”it’ll be a small amount of time out of my life……and then I’ve got the rest of my life to get on with”…….little did I know how many “hurdles” there would be!!!!!!!!!!!!!

 

Down to Basingstoke for a consultation with Mr Brendon Moran…..

Sally and I were expecting to be told I’d need more surgery…BUT !!!!!

..……… when Mr Moran explained about “a full cytoreduction”………

“This is a massive operation, its like 8 major operations in one go, one of the biggest survivable operations possible, very radical, (and very controversial till a couple of years ago)… basically…I’ll take everything out of your abdomen, throw some bits away, trim disease off various organs, clean everything else up and put it all back together!!!! 

 

After I picked myself up of the floor……Brendon and Suzanne (the specialist nurse) put a name to this “condition”….Pseudomyxoma Peritonei, or P.M.P. for short, ...and explained the full course of action to be taken….. I had to face:  a greater omentectomy, a splenectomy, a cholecystectomy, stripping of the right diaphragm, stripping of the liver capsule, trimming of the liver, a right hemicolectomy, gall bladder removal……… 10hrs of surgery, 5 days of intraperitoneal chemotherapy, 3-5 weeks min stay in hospital……

“if we leave it, we may not be able to operate….. what do you want to do”……

 

I thought about it for about 30 seconds…………..”can you do it tomorrow????”..........

Mr Moran pencilled me in for 4 weeks time………….

Home………..time to tell family and friends what we’ve just been told………………

 

 

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I’ve never once thought…“why me”… why should I???... it’s something that’s wrong with ME….its something I’VE got to “get over”!!!! Sometimes I feel very “selfish”!!

as in “I’m glad it’s me”…..what if it was one of the kids??…. Or Sally??….. how would I cope then???? Anyway,…. I’m going to fight whatever’s thrown at me!!!!

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I have a VERY positive attitude that I will get through this operation, I am also VERY positive that I will get my life “back to normal” in the following weeks/months after this surgery!!

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I’m booked into Basingstoke hospital for Sunday 6th March 05, for the operation on Tuesday 8th March 05. On Friday 4th March I walk our pet dog, Ellie, a 5 yr old German Shepard/English collie cross, up to “The shooting box”, a local landmark at the bottom of Roseberry Topping, the highest “hill” in N.Yorkshire. I ask God that I will be able “return to this spot” after my operation……………I optimistically give myself just 12 weeks for this return visit !!!!! On the Thursday evening we’d all been out for a family meal, we were all “very light hearted”, we enjoyed the whole evening very much.

 

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Sally was to be with me in Basingstoke for the duration of my stay. Her sister Jayne “moved in” to our house, we’d try to keep the kids life’s as “normal as possible”.

We drove down on Sunday morning, about a 5 hr journey, stopping off near Basingstoke for a meal, my last one for some considerable time!!! I got booked in to the ward early afternoon and met Mr Moran, we had a good chat with him. Too soon, they started “evacuating my bowels”. Not very pleasant!!! I slept well Sunday night, with very little in the way of nerves. Monday was a very busy day, meeting every one, having X rays/blood tests etc. I realised that in 3 weeks time, it will be Easter again,12 months since the “alarm bells” first rang!! I asked Suzanne (the specialist nurse) if it  “would be possible for me to get home for Easter??” “Can I make that my goal??”

“It isn’t very likely, but it’s not impossible…. if there aren’t any complications….”   My first goal then….. home for Easter!!!!

          Monday evening, still no “nerves”, not much anyway!!

 

That evening……....I PUT MY LIFE IN THE HANDS OF THE SURGEONS!!

 

I PUT THE SURGEONS HANDS IN THE HANDS OF GOD!!!!

 

Tuesday morning, surprisingly I’d slept!!! I got my gown on, the anaesthetist came to see me, Sally arrived at about 06.45. I was worried about how Sally would cope while I was “down”!!!!! About 07.15 we’re on our way, Sally and I say our “see ya later” (not goodbye!!), and I’m off into theatre. A few deep breaths, a few quick prays, …

 

 

Next thing I know…….”Stephen……..Stephen….. wake up.. you’ve had your operation, everything went well”. (10 hrs…. gone in a split second!!!) I managed to ask if I had a colostomy, (no!) and had I been given the chemo….(yes!). I remember Suzanne saying that I wouldn’t get the chemo if the operation wasn’t successful!!!! I went back to sleep with a smile on my face!!!

I woke up again in intensive care, with Sally there…..a MASSIVE relief. Sally told me again about the op, the chemo, etc…

 

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Now began “the big fight”…… Getting better, and getting home….. FOR EASTER!!!

 

Intensive care…..a blur of vague memories, nightmares, hallucinations, time going SO slowly for the first 36hrs (the longest time in my life….UP TILL THEN!!) ….Sally tells me I kept stopping breathing!!!!

Thursday morning, a new face…… and I feel “a bit more with it” today. The new face says….” MORNING Stephen…..lets have you sat up for a wash…”

“Erm…..I can’t sit up…..don’t you know what I’ve had done???”

“Yes I do know what you’ve had done, that’s my job….and yes you can sit up!!!!

I won’t ask you to do something you can’t do”.

“Oh…o.k. then… Give me a hand up”. I like this girl, her “can do…will do” approach!!!

I struggled through this “wash”, and laid back down…exhausted, but with a smile on my face….I’D ACHIEVED SOMETHING!!!..........The “first” hurdle!!!!!!

Later on Thursday I was taken down to the “general” ward.

 

 

 

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The hallucinations and dreams are as bad as ever, caused by the drugs, some people suffer more than others. I can clearly remember one in particular…

…driving a car down a motorway, I stop in the outside lane, get out….jump over the central reservation…. and start running towards the oncoming traffic….then I wake up, only for it to be repeated over and over……there were loads of others… just as weird!!

 The days are o.k., there’s always something to do, Sally’s ALWAYS there with me, nurses doing something, physiotherapists to try and please!!!! Dr’s rounds, Suzanne popping in for a word, other patients to talk to etc.

Night time is a different story, I stay awake till 23.00, settle down to sleep, go through all the usual dreams, hallucinations etc, wake up at 00.30, and that’s it!!!!! every night the same….. the longest time of my life…..for definite this time. The minutes drag, the quarter hours drag, the half hours drag……. I can not wait for the tea round at 06.00, even though I’m not allowed any!!!

The first weekend, I have a visit from my mate Billy and his girlfriend Jackie on the Saturday. Unfortunately I can’t remember much about this visit, one of my drugs has been changed and it turned me into a zombie!! Sally tells me Billy and Jackie took her out for a meal while I was out for the count…. a complete black out for me, a welcome change of scenery for Sally. I wonder how much she paid the nurses???

 Sunday sees me more “with it” again. My dad and (step)mum have travelled down to see me, it’s still a blurry memory, but I know I was pleased to see them.

 

It doesn’t take long for the nurses to have me sat at the edge of the bed, washing myself, shaving myself……. all viewed as achievements…..hurdles cleared…….

 Tuesday morning I’m taken back to theatre to have my central line changed, (the “port” for my intravenous drugs etc) and to have some X rays done, a couple of hours and I’m back on the ward. I’m now able to sit in a chair for short periods of time. I try reading and playing cards with Sally but find my concentration is completely shot, as is my short term memory, so its 5 minutes at a time. Sally tells me I also kept repeating the same questions and statements during conversation…..drugs again apparently!!!

It was about this time I said something I’d regret for a day or two!! A young oriental nurse called Chi chi was attending to me, Sally had her back to the bed on my left hand side. A look of shear disbelief appeared on Chi chi’s face…. I looked round and Sally appeared to be wearing a pair of giant size bottle green knickers!!!(it was the type of trousers she had on!!) I said to Chi chi, “don’t worry about that, she’s always wearing her mother’s knickers” …….

You would think it was the funniest thing she had ever heard…..tears were pouring down her face….she was in kinks…. Of course that set me off laughing, …………… not advisable a week after major surgery…… Sally was doubled up…. another nurse came in to see what was happening….

That made my abdomen and chest HURT for days after!!! ………….. Chi chi tried very hard not to laugh every time she saw me or Sally after this….not very successfully!!!

 The physiotherapist has me walking a few steps, holding onto my drip stand. The tubes from my chemo come out of my abdomen, there’s six altogether, a massive hurdle cleared as far as I’m concerned !!!

 I’m looking forward to the weekend now, my sister Patricia is bringing Niall and Lois down for two days.

Saturday morning sees me feeling my best yet, it’s been a week since the chemo finished and I’ve slowly felt “less ill”. This morning is the first time I don’t feel physically sick, I feel quiet bright and alert. I can’t wait to see the kids.

It’s great to see them walk round the corner, a BIG smile on my face, and some reassurance for the kids that “dads alright”. We’ve been talking about 10 mins, then out of the blue I start my “dry heaving” again, the last thing I want the kids to witness.

I can’t do anything about it though, the nurses come in, ask Patricia and the kids to leave me for a while and pull the curtains round. After 15 mins or so I calm down, but feel drained. I have an hours sleep and they all come back, I feel o.k. for the rest of the day. Sally goes out for a meal that night with them, Sunday morning comes around, and Lois enjoys filling me in on all they ate and drank!!! When they all go for dinner, one of the nurses pulls the curtain round and I have 26 of the staples removed from my main wound, I loved that sensation!!!.... another hurdle cleared.

Late afternoon I say my goodbyes to everyone, Sally’s driving them all home, spending a day or two at home before returning to Basingstoke. All I’ve got on my mind is the fact that it’s Easter next weekend!!!

 

 

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Monday…the other 26 staples are removed, it feels like when you pull a hair out!!

Tuesday sees Sally arrive back…… a great relief to me. I am taken to theatre again for another change of my central line, more X rays etc. It’s about this time I have my chest drain removed (OUCH!!) and my catheter removed (OUCH!!). ALL OF A SUDDEN, ALL I HAVE LEFT TO BE REMOVED IS THE STOMACH DRAIN (it’s through my nose and down my throat) I feel much better now, boredom is starting to be a problem, so I must be getting better!!! Not soon enough the last drain is removed…… FREEDOM…. I “celebrate” by having a shower!!!!!!!

By now I’m walking twice round the four wards (one big square block) three or four times a day, Sally and I even get the lift down to the ground floor and go for a walk to the hospital shop. On the way back I decide not to get in the lift!!!!! I’m going to walk up the stairs……. Its hard work…. but the sense of “elation” means it was worthwhile ….. and it means I’ll do the same again tomorrow!! Another hurdle cleared!!!!

Wednesday, I’m allowed tea now…..this is wonderful…… a BIG smile on my face.

I also eat my first “solid” food……. half a fruit jelly!!!!  My walk today takes me down the stairs (hard work!!) and out to the “peace” garden for a bit of sunshine, then back up the stairs. The good news is…. I’ve kept the jelly down….. Wow, I have a ¼

of a salmon sandwich for my tea,…..

Thursday…. toast for breakfast (this is a big deal!!!), the doctors round is nice and early……. “do you think I can go home??…….” a lot of consideration between the doctors and nurses….

…. and I get a “no”. It’s a long bank holiday weekend for Easter, I won’t be home for Easter day!!! I soon “get my head” round this “delay”…… it will soon get round to  Tuesday……….

I get a bit too enthusiastic with my dinner on Thursday, fish in sauce with potato. I eat too much (less than half a portion!!) and can’t keep it down.

Good Friday…….. a very quiet day on the ward. The nurses suggest that Sally takes me over to her flat for a while, so we walk over and we eat a fish pie together…. I actually feel hungry for the first time!!!!

The rest of the long weekend is a blur of boredom………… I want to go home.

  Tuesday arrives, the doctors do their rounds…………

 

YES………… I CAN GO HOME!!!!

 

Shower, dressed, wait for my drugs to take home………….

11.00, …. and goodbye to every one on the ward, all those wonderful nurses, Suzanne comes to say goodbye (BIG cuddles…. & tears all round!!)………… and were on our way.

 

I feel VERY VERY fortunate that I got through my 3 week stay without ANY of the hundreds of possible complications that were a very real risk!!!!

 

After been home 12 days I decide to walk Ellie across “the first field” (much to Sallys exasperation!!). I feel exhausted, but get the same “elation” I would get in hospital.

I very slowly increase my walks over the following weeks, after about 6 weeks I’m walking a 1.5 mile “round trip” in the local woods, and soon I’m doing this walk twice a day.

 

Friday 22nd May 2005…… I return to the shooting box…… 12 weeks exactly since my last visit……… this is a 4 mile “round trip”, up a long, steep climb through the woods. This is a MASSIVE boost to me!!!!!!!!

 

                                                July 2005

                                                  

PLEASE………. Don’t anyone get me wrong………. I’m not trying to “belittle” what I’ve been through……..the MASSIVE major surgery……... the chemo……the long slow process of recovery……….. (I know that I have been very fortunate right through the whole “episode” with my P.M.P. so far)………..

I just want people to see what can be done with “the right attitude, some strong determination and a lot of prayer”.

I’ve had literally “hundreds” of people praying for me for month after month!!!

 

                 

“THANK GOD I’VE MADE IT TO HERE!!!”

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I need say a massive “thank you” to Sally…. Without HER strength, without HER determination, without HER attitude, without HER commitment……… I don’t know where I would be now……….

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The "Farley" Family

 

 

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Niall & Lois

 

 

 

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Me with Ellie…….. 16weeks post op.

 

 

 

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                                              Dec 2005

 

 

I’ve come such a long way in the last couple of months….. especially when I look back to the first few months back at home. I really have tried to get on with my life…. which is what I promised myself I would do in Oct 04. My first consultation with Mr  Moran in Feb 05…. things were been said that left me thinking “how do I take it all in”…. “one of the biggest survivable operations”…. “50% chance we won’t be able to do anything”…. “20% chance you won’t make it”… “20% chance you’ll need another operation during your stay in hospital”… “chance of you getting leukaemia”…  “the chances of complications”…  the list seemed endless!!!!! My rate of recovery has been called anything from “remarkable” to “unbelievable” by the Specialists, the Nurses, the Drs/G.P.s etc……. Walking back onto the ward in Basingstoke 8 weeks post op (for my first post op check-up), Suzanne spotted me & ran across the ward for a hug, all the familiar faces doing “double takes”….. EVERYONE “gob smacked” at my appearance….. all the big hugs & encouraging words…. it was all very heartening for both myself and Sally.    

 To get back to camping at the end of May was “hard”…. but I’m glad we did it, we enjoyed nearly a full season of camping… lots of long weekends away & a week by Lake Ullswater in the Lake District. To get back to my love of motorcycle racing in June…. again “hard”…. but I got to 3 or 4 meetings in the season…. including 2 weekend long meetings at Olivers Mount, Scarborough. We got ourselves another dog in September, I could train him while I had “time on my hands”. We settled on a 10mth old Saluki X from a local rescue centre. We call him Tiye… him & Ellie get on famously, tearing round the local wood & hills.

  While I was in hospital I was reading about Jamie Whitham, one of my bike racing “heros”, his battle against Cancer…. and his fighting attitude… “I can either lay down & die…. or get on with my life”, A REAL INSPERATION TO ME!!. In Nov I went to a charity auction run by a local motorcycle club, it was attended by a lot of bike racings “big names”. To meet James Whitham in person, a real everyday bloke, an outstanding bike racer AND cancer survivor, to talk to him & have a pint with him….. it was a proper tonic to me, a real buzz!!!!!

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With Motorbike racer/Cancer survivor James Whitham!!

 

 

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Tiye & Ellie by the shooting box

 

 

 

 

 

 

March 8th 2006

 

One year later: A “definite” for today was a walk up Roseberry Topping, my all-time favourite viewing point………. to help me realise how much life means to me (not that I “need” help to realise!!) and to “show myself” that the effort and hard work involved in getting better/getting stronger were worth it. Stopping off at the shooting box on the way, thinking what I was going through 12 months ago right NOW…..  I so much appreciate the early spring, the crisp, frosty morning, the clear air…. continuing on up Roseberry, knowing that the effort will be worth it. Once at the top, as I get my breath back I fully appreciate what I’ve been through in the last 12 months, and know that I am very very fortunate to be physically strong enough to even CONSIDER a walk such as this. Saying “Thank you” to God as I take in the views of Cleveland, the Hambleton Hills, the N. Yorkshire Moors & even the Pennines, is very emotional for me…….. but it was one of my “aims” or “goals” in my recovery…….. another hurdle cleared.

 

 

For all I was warned about the “emotional” side of  my first yearly scans/tests etc, getting through the day was not a problem for me, nor was the “3 week” wait for the results. (it ended up a 9 week wait…. but that’s another story!!) However after 9 weeks…….. finally getting the phone call from Basingstoke to tell me the results were in the post….. “and I’m happy to tell you that everything is clear Mr Farley”, I was just SO pleased & emotional that I couldn’t even tell Sally or my Dad……… I’m sure they must have thought the worst………. 

 

 

 

Another 3 month down the line, I’m starting to feel “well” for the first time in years. Suzanne told me that it would take a couple of years, but I’d slowly realise how “unwell” I’d actually been……. with the illness slowly creeping up on me for a number of years. Something that I haven’t done for years……. this morning I found myself “running up the stairs two at a time…….” strangely emotional actually!!!!!

 

 

 

 

21 months ago Mr Davis told me “you need to start considering the fact that you’re unlikely to work again….”

After much thought I’ve returned to wagon driving after a short period working as a butcher in a local shop. It’s all local work, and only 3-4 days a week to start off with……. But its another goal reached, another hurdle cleared……..

 

 

 

 

 

 

 

 

 

 

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