Ian Parker – Pancreatic

 “2 years ago I seemed to be fit and well and at 74  into my second year of full retirement.

This changed suddenly when I was diagnosed with pancreatic cancer at which time I had no knowledge of what was involved with the Whipple procedure and before it was offered as a potential life-extending treatment.

By coincidence, I discovered that the mother of one of my daughter’s friends had the Whipple procedure a year earlier and I found talking with her very helpful both before and after the operation.

I’ve set out below my own experience with the operation, its after-effects and the care and support I’ve since received in the hope it will help inform other patients in the way that my friend Suzanne Melhuish helped me.

In my life, before 2022 I had the good fortune to have excellent health with no time off work through illness for over 10 years and any hospital stays were solely to sort minor sports injuries.

In the previous two years I’d experienced some loss of weight and then increasing sensitivity of my digestive system but, with negative results from investigations through my local GP practice and screening for bowel cancer, I assumed it was Irritable Bowel Syndrome.

I‘d remained active with regular swimming, cycling and running since retiring in 2020.

In June 2022 I had the annual over-70 health check at the local GP surgery including a blood test and was told I had very good health.

Significantly the CA19-9 blood test tumour marker hadn’t been included in the health check blood test. 

Three weeks later I became heavily jaundiced and was advised by my daughter who is a doctor to see my GP as soon as possible.

I was given an urgent appointment along with a blood test slot the following day at Lymington Hospital. 

My GP received the results the next day and telephoned me to say that he was sorry but the results strongly suggested I had a tumour.

He referred me to a hepatobiliary consultant at SGH who I saw within 3 weeks.

This was followed by a CT scan the results of which were discussed with the hepatobiliary consultant at Southampton General Hospital who described the extent of the tumour around my pancreas and the very limited options for treating this successfully. The Whipple procedure was identified as the only realistic option for survival beyond the short term.

The rigours of the operation and its physiological changes were spelt out and I was questioned about my general health, fitness and attitude to such an operation.

These factors appeared to be a major determinant of whether the operation would be feasible and would be supported by the consultants of the Multi-Disciplinary Team irrespective of how the patient might wish to proceed.

Initially, I was given a date for the operation two weeks later but a major complication arose as my Bilirubin level was six times the maximum allowed for the operation to proceed safely.

This led to 2 stents being inserted using arthroscopy but these failed to bring down the Bilirubin levels. It then took a further four weeks before the level was lowered sufficiently to allow the Whipple operation to proceed. 

18th September was set for the operation but on the morning of the 18th, the consultant surgeon reported in with a positive Covid test so a replacement surgeon led the theatre team.

In the preparation for surgery, the surgeon and the anaesthetist were both very reassuring,  whilst also describing the procedure in detail and highlighting the significant risks involved.

The operation proceeded which I understand took over nine hours.

The initial contact on regaining consciousness in the recovery room was also very supportive and positive.

This was followed by two days in the high dependency unit with strong encouragement to mobilise the next day with accompanied walks around the unit and then further within the hospital.

The operation involves incision through the core muscles of the lower abdomen which initially severely restricts one’s ability to sit up and move around. 

Physiotherapy was provided to help overcome this and to reduce the risk of any lung infections. 

Four days were then spent on a general ward before early discharge due to a Covid outbreak in the ward.

Arrangements were put in place to provide daily home visits to dress the wound but probably due to the rushed nature of the discharge the arrangements for the home visits did not work over the weekend which was followed by a bank holiday.

The surgical wound then became infected and high temperatures and severe discomfort led to a readmission to the General Hospital.

Antibiotics were then administered on a five-day stay which brought the infection under control.

 The surgical wound then took a further two months to heal with prolonged and uncomfortable weeping at night despite daily re-dressing. 

The sister at my local surgery was instrumental in eventually resolving this. 

The initial effect of the Whipple procedure on the digestive system is profound and the replumbing of the system takes some time to settle down.

Getting the right level of pain relief was important. Also, it was necessary to establish the amount of enzyme replacement tablets essential for the effective digestion of any food. Through trial and error, I found I needed between 2 and  3 times the standard dose and this was increased in steps in agreement with the surgeon and dietician to reduce the cramping and malabsorption of any food consumed.

It took several months for the sensitivity of the digestive tract to settle down after the major physical changes involving the removal of part of the pancreas and stomach and the complete removal of the duodenum and gall bladder.

Eighteen months on there is still sensitivity to certain combinations of food and fluids but any discomfort is now short-lived.

All of this reflects the extent and suddenness of the changes of the Whipple operation to the human digestive system which in contrast has evolved in homo sapiens over some 100,000 years.

During this time the exchanges I had with Sue Melhuish were reassuring and her pertinent observations helped me a lot. These included “ I never cease to be surprised by how Whipples will make me feel” and “Whipple certainly threw me a curveball today “.

I experienced difficulty in replacing the weight loss mainly before but also some after the operation and this contributed to the delay in starting the next stage of recovery which for me was a programme of chemotherapy.

At every stage in the preparation for and delivery of the programme of chemotherapy, the consultant oncologist and her team were thorough and attentive and I was able to commence the programme in December 2022 nearly 3 months after the operation.

This programme ran for six months with infusions of Gemcitabine every week for 3 weeks at Hamwic House within the General Hospital grounds and  Capecitabine administered by tablets taken at home each morning and evening for the same 3 week period. 

After each 3 weeks of chemotherapy, the 4th week of the cycle was used to provide respite with neither infusions nor tablets required. This pattern was continued until the conclusion of the sixth and final cycle in May.

The chemotherapy had unwelcome side effects but these were carefully monitored by the oncology team and minor adjustments were made to the dosage when required.

Living about 8 miles from SGH attendance was easy for weekly blood tests on Sundays and the weekly infusion appointments the following day at Hamwic House. 

The side effects of the chemotherapy included nausea, severe tiredness, blotchy skin, changes in the hair [but no significant loss], diarrhoea, gout and additional loss of hearing. 

These were all monitored through the chemotherapy team and diminished on the completion of the programme except for the hearing loss.

The severity of some of these side-effects increased in the latter stages of the chemotherapy programme and certainly physical fatigue was worst near the end of the programme. 

I experienced the condition known as Drop Foot in my left leg after the  Whipple operation which made walking difficult but with physiotherapy exercises, this condition cleared totally after about six months. 

The side-effect of attacks of gout first in my knees and then left hand during the chemotherapy was particularly painful and debilitating. This now appears to be under control from recommended dietary changes and the availability of medication if a flare-up were to occur.

Changes in the functioning of the revised digestive arrangements after Whipples were considered a major factor in developing kidney stones a year after the operation.  Passing a large kidney stone was a strong incentive to reduce the risk of further stones developing by carefully avoiding certain foods and ensuring good hydration.

These side effects have been unwelcome and did provide frustrations whilst trying to get back to fitness but were accompanied by the substantial clinical benefits the chemotherapy brings.

Throughout my treatment, I’ve had great support not only from my family and close friends but also from the specialist nurse, acute oncology and oncology support teams based in the SGH.

Navigating a way through the uncertainty of such severe changes to one’s life can be bewildering and the ability to communicate with these individuals and their teams has been of immense value to me and I’m sure many other patients before and after me.

The issues which arise tend to change over time as recovery proceeds but the value of the guidance to the patient and support given remains the same.

Regional and national charities such as Planets and the Pancreatic Cancer UK provide a wealth of information and support in person, digitally and in publications such as the pancreatic cancer cookery book.

I’ve found the Whipple operation and chemotherapy gruelling at times and would not wish to sugarcoat these aspects but these need to be considered alongside the benefits which accrue from the successful delivery of the Whipple procedure and linked oncology and supportive care.

If asked again to decide whether to proceed with a Whipple operation  based on what I now know  my response would be a very strong “Yes.”

I’ve attempted to explain how I was affected by the operation and subsequent side effects but for me, these fade into insignificance when compared to the brilliance of the Whipple procedure carried out by the surgeons and theatre team, the work of the nursing care, oncology and support teams and charities at Southampton General Hospital.

Already this has given me an additional 18 months of life with the prospect of more to follow albeit with changes and limitations but many of these occur in any event as we get older.

 I’ve not mentioned by name any of the professionals involved to avoid inadvertently excluding individuals but along with my family and close friends, I  will always be immensely grateful for all they have done. 

I hasten to add that this is my personal opinion and each individual will have differing personal and medical circumstances in considering the benefits and constraints of the Whipple procedure.

If anybody diagnosed with Pancreatic Cancer would like to discuss any of the points I’ve raised I’ll be pleased to do so through the auspices of Planets by telephone, email or in person.”