Decorative image

Les' story

Les is 70 and was diagnosed with oesophageal cancer in September 2013. He is married to Janet and enjoys road cycling, climbing and skiing. Here is his story and his personal view on what helped him to get through treatment.

Sudden diagnosis

les1-intro.png

I had sudden bouts of vomiting freshly chewed food, stomach pains and weight loss. With the benefit of hindsight, I realise that I had had some intolerance of spicy foods over the last two years. I had also had a dry mouth and sore throats.

I saw my GP who initially prescribed medicines to reduce stomach acid production. After a month the symptoms were no better.

My GP referred me for an urgent endoscopy. It showed a poorly differentiated adenoid carcinoma. I had CT and PET scans in a cancer treatment centre, which showed no hot spots or distant metastases. So the cancer hadn’t spread.

I was transferred to the care of my local hospital. At this time, I had significant weight loss due to the cancer blocking the oesophagus and leaving only a 9mm hole for food to pass through.

I was unable to eat and could only drink fluids through a straw. I suffered from severe difficulty in swallowing during those first few weeks. I controlled the pain by using co-proxamol 4 times a day. That controlled the pain but caused some constipation, so I took Syrup of Figs, a natural laxative.

After a further gastroscopy (endoscopy) and argon laser treatment to widen the oesophagus I had the first of three 9 week sessions of chemotherapy.

Chemotherapy

Chemotherapy reduced the size of the cancer quickly. Within 10 days I was able to eat some solid foods. I coped with chemotherapy well and put this down to having good fitness levels. However, during the third (postoperative) session I had a chest infection, which was successfully treated with antibiotics. I also had significant changes to taste. Foods that I had liked became undesirable.

I had periods of mouth ulcers, tiredness and lack of energy. But I continued to walk and ride my bike daily. My mouth ulcers were soothed with adult Bonjela, mouthwashes and saline gargles.

Personal food tips

I found it helpful to have small quantities of soft foods high in protein and carbohydrate. They included

  • full cream milk
  • chocolate
  • creamy rice, semolina and tapioca puddings
  • ice cream with liquidised tinned fruit
  • porridge (with Nutella as a source of protein)
  • boiled white fish and poached egg
  • toast
  • crisps (these seemed to go down particularly well)
  • ice lollies and jelly (they helped to combat the metallic taste)

Things I couldn't eat

Vegetables with skins, especially carrots and tomatoes were impossible to keep down unless served as liquidised homemade soups.

Psychological effects

During my lifetime I have experienced life and death situations on high mountains and in 2 armed conflicts. I survived the bombing of the Sir Galahad during the Falklands campaign.

I have led a full and rewarding life surrounded by a close family, 6 grandchildren and my wife (an experienced community nurse). My attitude, to use an old military analogy: “if the bullet’s got your number on it, it will get you. It will either kill you outright or injure you, in which case you put your life in the hands of the medics”.

During the staging process I didn’t know if the condition was treatable. I had to wait 9 weeks for the chemo to end and for a further CT scan before knowing whether it was operable or not. Worrying about it seemed a terrible waste of energy. This waiting period was used to good effect: putting my affairs in order and preparing those nearest and dearest if the outcome was palliative care only.

When the final CT scan was done my consultant offered me “surgery to cure”. If I refused surgery, I wouldn’t have survived for more than a few weeks so the choice to proceed was a “no brainer”.

Preparing for surgery

The consultant explained the risk factors relating to surgery. It became clear that I, the patient, had an important role to play in cooperating fully in the team effort needed for a successful outcome.

There is a 25% risk of chest infection post operatively so it seemed like a good idea to regain a high degree of fitness after 9 weeks of chemotherapy. I rode my bike between 100 and 150 miles a week. The lung function test before the general anaesthetic showed excellent results for a man of my age.

The cycling also built up muscle density, where 30% loss can occur during hospitalisation. I also deliberately put on an extra 6.3 kilos in weight knowing that weight loss was inevitable due to the “nil by mouth regime” after surgery. I was a bit apprehensive about coping with this “nil by mouth regime” but reasoned that others have endured much worse. 

In short, cycling, the skills of the surgeon, the nursing team and a positive mental attitude saved my life.

To summarise, my stress levels in the anaesthetic room prior to operation were 2: on a scale of 1 to 10, with 1 being lowest and 10 the highest. I had done all I could to prepare for the operation and was now in the hands the surgical team and God. So there was no point in wasting energy getting stressed about it.

My tips

In my experience, it is essential for any patient to find a coping mechanism.

  • Put your family affairs in order.
  • Talk about your condition with family and friends.
  • Share the operative risks with them.
  • Listen to advice given to you by your surgeon, anaesthetist and other health professionals and act on it.
  • Read the information packs and don’t be afraid to ask questions no matter how trivial they might appear.
  • Work hard at developing a close relationship with your consultant and specialist nurse.
  • Play your part as a key member of the team by heeding the advice of the professionals and keep a positive mindset even during the dark moments.
  • Realise there is light at the end of the tunnel and you will get through the biggest challenge in your life.

Surgery

The operation took 11 ½ hrs, of which the first hour was mainly taken up by the anaesthetist and his team. Before I was put to sleep, I had a cervical epidural, which is a painkiller given into the fluid around the spinal cord though a small tube.

les2-surgery.png

After surgery

Facing such major surgery, I was expecting quite a lot of pain afterwards. But the epidural and other analgesic regimes made the recovery almost pain free. Naturally, there was some discomfort but a lot less than I expected.

I had a nasogastric tube, chest drain, wound drain, feeding lines in the neck, a drip and a catheter all inserted when I was asleep. They caused a little discomfort over the next 3 weeks.

The intensive care ward was very busy and noisy but every expert you can think of was on hand 24 hours a day, which gave me much reassurance. Intensive care was the best place to be during those first critical days.

A chest infection was the highest on the risk scale. So the physiotherapist taught me how to use a rolled towel as an abdominal support to achieve 3 different techniques you need to get rid of sputum from the base of your lungs.

After such major surgery you are very weak. I admit to not knowing what “weak” actually meant. One is devoid of energy and unable to lift oneself up without help. The day after the operation I was helped into a chair. It was the best possible place to be after chest surgery involving collapsing the lung. Sitting up makes it easier to breathe. It is also impossible to lie on the side where the chest drain is situated.

I had to go through the deep breathing exercises hourly, which took determination and self- discipline, as the overall weariness was begging me to sleep. This is where you, the patient, must keep your part of the bargain and force yourself to do the exercises. Getting a chest infection at this time is very serious indeed and could prove fatal. 

I was aware that taking a drink could compromise the anastomosis (the wound join in the food pipe). I was surprised at how easy it was to manage without food or drink. It helped to use iced water with a little lemon cordial as a mouthwash. But a dry mouth was an issue and nothing seemed to resolve it during the hospital stay.

A week after the main operation I was taken back to theatre for a second bout of surgery to stop a leak of lymph fluid. Patients should be aware that complications with major surgery such as oesophagectomy do happen but can be overcome.

After 2 weeks, the X-Ray and CAT scan showed the joining of the oesophagus had healed. I was initially allowed 30mls of water an hour to drink. The following day this was upgraded to a “free fluid state”, which in effect meant that I could drink when thirsty.

The first cup of warm tea was nectar. The following day wet food was introduced. These meals were especially formulated for this procedure but tasted foul. Ice cream and rice pudding were the best choices.

Getting mobile

Again, I must emphasise the importance of trying to get fit before the surgery. That helped me when the physiotherapist and her team started to get me mobile. At first walking a few steps across the ward was not easy but I accomplished it with the support of 3 helpers.

Sitting in a chair or lying in bed caused a lot of swelling to my hands, arms, feet, ankles and legs. This meant that my weight increased by 12.7 kg (2 stone) but the swelling fell away quickly once I was mobile.

The second day I was able to walk 100 metres, albeit very slowly, without feeling dizzy or having to stop for a rest. Once the tubes and catheter were removed, I was able to return to some sort of normality. I still needed the help of the nursing staff for washing, showering, shaving, and using the lavatory. They did my dressings and also changed the essential Deep Vein Thrombosis (DVT) stockings.

At the end of the third week in hospital I had to complete the “step test” before the physiotherapist would authorise discharge. This consisted of climbing and descending 3 steps twice.

Coming home

Every patient looks forward to going home but it is important to think the process through thoroughly.

I was lucky that my wife worked with the district nursing team for many years. She had the knowledge and skills to prepare the home for my return. Even though I had passed the “step test” I wasn’t strong enough to walk from the ward to the car collection point and had to use a wheelchair.

Our car is easy to get in and out of, which is important. A low car, like a sports car, would have been impossible. The journey of over an hour was bearable.

I went straight into the living room. A comfortable high chair had been prepared with extra U shaped pillows to support my back. The room was equipped with a commode, urinal, vomit bowls, tissues and a fan (all funded by ourselves).

I was so weak that climbing up a flight of stairs to the bedroom and toilet was impossible. So for the first few days I decided to sleep in the chair as I had done on the hospital ward. This sitting up position after chest surgery makes breathing and coughing easier.

Getting to sleep was not a problem because I was so exhausted. The next day my wife had me walking around the room. She followed with a lightweight plastic chair in case I fell. That afternoon I walked from the front door to the garden shed, about 50 metres. My wife had placed chairs about every 5 metres and then helped me to walk.

By the end of 7 days, I could walk 200 metres. By day 3, I could make it to the bathroom. But I had to sit on a stool to clean my teeth, shave and wash the front of my body. I couldn’t manage to wash around my back or cope with a shower at this stage. So my wife helped me with this.

By day 5, I was able to sit in the shower. My wife had put 2 additional grab handles in the shower, costing £5 each from B&Q Store. They work beautifully.

Tips: When able to use the bathroom\loo don’t lock the door and do make sure your carer is in earshot in case you have a “turn”. My wife bought 2 hand held “walkie-talkies” from e-bay so we could communicate around the house and garden.

The chest scar caused the most problems, as it felt like my chest was strapped with Elastoplast. The scar here was very tender. I had to lie on the scar side as lying on the other side was too painful. It was 9 days after discharge before I was able to sleep in my bed.

Exercise regime

I was told to expect that it would take 6 to 9 months to get back to any sort of normal fitness levels, maybe even a year. It is a fact that the individual knows their body best and that the road to recovery is in the hands of the patient. So a strategy needs thinking through.

My strategy was simple: plan daily activity then do a small percentage more than the plan, knowing that my body would tell me if I had done too much.

First week

I was using a walking stick and the assistance of my wife to walk outside – 50 metres twice a day. I then increased it by 10 metres each day. I'd get out of the chair and walk around the house every hour.

As there was at least 30% muscle loss due to lying in a hospital bed I began leg and arm strength building exercises using small dumbbells weighing 1 kg.

Second week

I was fortunate enough to be in a position to buy a mobility scooter, which could easily be broken down to fit into the boot of the car. However, an ordinary wheelchair would have worked. This allowed me to go out and walk in different locations. Although not essential, it did however bring a sense of normality.

By the end of week two, I was able to walk half a mile, including uphill. Walking uphill makes more demand and requires deep breathing. That was initially quite tiring, so slow down and maybe use a walking stick as an aid.

Weeks 3 to 4

I continued to make good progress and by week 4 was able to walk a mile with the aid of a walking pole, albeit slowly. During the middle of week 3 I got back onto my bicycle attached to a turbo trainer. I cycled using the lowest gear possible for a period of 5 minutes in the morning followed by the walking.

By the end of week 4, I was able to use the turbo trainer for 15 minutes in a slightly higher gear. As a keen cyclist, using the turbo trainer was as much psychological as it was practical.

Week 8

Continuing with the same strategy, by the end of week 8 I was able to walk 2 miles a day without a walking stick. I increased my arm strength and was able to carry out some very light work in the garden, wash the car and generally potter around. On two occasions I overdid it and became a bit breathless. I soon learned how to pace myself.

Weeks 8 to 14

I was able to walk 3 miles a day at a reasonable speed of 3 ½ to 4 mph. I could ride my road bike for 15 miles on the flat and do some light digging in the garden.

Chemotherapy

Although the operation was a complete success and the prognosis good, I needed 3 more sessions of chemotherapy. This was to mop up any rogue cells that may be present. The oncologist warned me this might be more debilitating because my body had gone through a major intervention and wouldn’t have the same strength as before. But, the exercise strategy in the 8 week gap after surgery helped.

Community nursing

In my area the community nursing service is overstretched and underfunded. They will help where they can but prioritise those patients who don’t have a family member to act as their carer. So be prepared to plan and support yourself. It isn’t easy and a certain amount of knowledge and advice is needed, which you can get from your specialist nurse, the Cancer Research UK nurse helpline, or patient support groups, like the Oesophageal Patients Association.

The secret to recovery

I believe that the key to recovery is a positive attitude and a determination to get your life back. A sense of humour is critical. Support from your partner\carer, family and friends is vital. There will good days and not-so-good days and maybe occasionally a bad day, but you are still alive. You have a chance of many years of active life ahead. Enjoy every minute.

Les-cycling
Les speeding ahead as other cyclists drop out on the hill.

Information and help