Stewart tells of his Whipples Surgery Experience

Stewart, Diagnosed with operable cholangiocarcinoma (bile duct cancer) in December 2010

StewartLets get started. I was under investigation for possible gall stones in early December 2010. Usualsymptomsjaundice, pale stools, dark urine, itchy skin. My doctor sorted out blood tests and an ultrasound, which found nothing. So was organising a trip to my local hospital for a scan.

On 20th December I was rushed to Scarborough hospital (North Yorkshire) after vomiting and fainting plus I was also running a very high temperature. I was admitted immediately.

Another ultrasoundMRI, and ERCP were carried out. The ERCP showed a lump on my bile duct, and a biopsy was taken. At 4-30pm on Christmas Eve I was undergoing a CT scan. Fast forward to the 29th December and the Consultant Mr. Mainprize says I need to be transferred to a specialist cancer unit of my choice. Thankfully I chose Castle Hill at Cottingham, East Yorkshire. I was transferred on New Years Eve.

Following further tests and an EUS along with another MRI, the Consultant of Upper GI, Mr. Wedgewood suggested I needed a full Whipples procedure. After my consultation, and with my mind on one thing only: “Get this lump out of my body,” I went through all the pre operation advice and had NO doubt, even if it turned out benign all cancers start that way, so I wanted rid.

On Friday 7th January I went home and awaited the call. On Sunday 9th January, Castle Hill Ward 14 calls. A cancellation, and I’m down for the Whipples on Monday afternoon. Wife in tears, butterflies in my stomach, I travel to the Hospital and ward 14. Consultant Mr. Wedgewood gave me the final warnings and told me the ITU has a bed and the HOB (High Observation Bed) in Ward 14 is ready. Fitful nights sleep and nil by mouth (so even dryer than normal) the morning arrives and all the pre-op paraphernalia start. Visit by Mr. Needham (Wedgewood’s No.2) and the Anaesthetist, Ward Sister, HOB nurse, et-al.

It’s down to theatre at 1300hrs pre-meded and VERY scared.

Sometime very early on Tuesday morning (the 11th January) I wake up in ITU obviously high as a kite, but soon get back to sleep. 7ish in the morning is the trawl through the patients to see who is fit enough to go to the ward. I’m sent back to ward 14 as they have a HOB bed ready for me. It’s about this time I notice that I seem to have more tubes hanging out of my body than an Octopus has tentacles. I won’t go into details suffice to say you all know what I mean. Up in Ward 14 I am settled in by the Staff Nurses and amazed by the lack of pain, probably down to that little needle in my back.

There followed three or four days in the High Observation unit before I am deemed fit enough for transfer to the ward. I suffer a setback some days later (seepage from internal stitching) so it’s back to the HOB. Staff nurse tries to raise my spirits with “Don’t worry only another 7/9 days of Sips” (water to wet lips only) it didn’t work I was depressed…

Any way to cut a long story shorter I am back in a private room some 8 days later, starting my rehabilitation again. This time, no setback and I start on solid food and meet “Mr. Creon” for the first time. Fast-forward again to the 9th February and I am allowed home under the care of the District Nurse. Still tying my best to balance my Creon with my food intake.

Mmm! Shall I have a glass of wine to celebrate my homecoming??

First night home I had classic Fish and Chips for dinner. Boy did I suffer! Stomach cramps and a serious bloated feeling, firing Creon down like sweeties and anti nausea tablets closely following. “Yes, I hear you say, self inflicted” and you’re right. So it’s the next night and a nice fresh Pasta meal with tomatoes and a little Parmesan with a glass or two of red wine. 1x 40000 and 1x 10000 Creon, I seem to be getting the hang of this. No overnight problems. Mm! first lesson DON’T overeat and balance Creon with fat intake.

Fast –forward two weeks and I go to see my Consultant to have my drain tube removed. Scan first then up to Ward 14 for to see old friends and have the drain tube removed by the Staff nurse. FREE AT LAST! Nothing hanging out of my body: brilliant!! Next three months I spend balancing my Creon with my food and a little help from Helen Wheldon my Dietician via the telephone to Castle Hill. Then back to see my Consultant Mr. Wedgewood. This is the BIG one. Answers to all the questions I might have about what was in my body plus the Biopsy results on the other things removed during the operation.

ANSWERS PLEASE!

Tuesday June the 7th 2011 and it’s back to Castle Hill for a meeting with my Consultant Mr. Wedgewood. Confirmation of biopsy found it was a stage T1 carcinoma of the bile duct (cholangiocarcinoma) with no spread to any other part including blood vessels, lymph glands also clear and the Oncologist says chemo not needed. WOW!! Wife is present and she also asks a few questions, as I’m still numb. And even though I thought it was non-malignant, I feel good. Mr.Wedgewood says the prognosis is very good and will see me again in December. Jo, my “Hepatobiliary and Pancreatic Clinical Nurse Specialist” Says if I get any problems to ring her and I will be re-admitted to ward 14 for tests. So far, so good. It’s my Birthday on the 4th October and my wife is treating me to a night at one of our favourite restaurants “Le Manoir Aux Quat’Saisons” Everything in moderation I hear you say! What the heck, lets celebrate being alive eh?

I still have the occasional hiccups with the Creon, notably when I don’t take enough and the stomach rumbles start and the Wife tells me off. Anyway, I’m up to date now, so you all know my Whipple history and I for one never regret the decision I took. Who wants a ‘stent’ to keep the bile duct open until the lump goes to stage T4 and grows too big for any surgical with the nightmare of secondary’s ?

NOT ME

This shows that the system, when it works, it works very well indeed. The NHS is the jewel in our country. What sophisticated society does not look after it’s people who are unfortunately laid low with a serious illness as I was. If I lived in America I would have been required to pay for the operation or die, that is not a choice any civilised country should lay before the sick or ill.

I have nothing but praise for Scarborough Hospital and Holly Ward, Mr. Mainprize for his initial diagnosis and recommendations. Also Castle Hill Hospital, Ward 14 and staff, along with my Consultant Mr. Wedgewood and his team. Your professionalism and kindness got me through this.

I could still get another tumour but this one has been eliminated, so I have a better prognosis than I would have had if I hadn’t had this operation.

PLEASE LEAVE our NHS alone, it works!!! I am living proof.

Stewart, October 2011

For more information on bile duct cancer specifically,  there is a UK charity, AMMF who exclusively deal with this condition. You can contact them by following this link http://www.ammf.org.uk/