John & Chrissy Gorham support HCUK
"I was diagnosed with oesophageal cancer last month and I am under the care of Tim Underwood and Andrew Bateman at Southampton General. My condition was diagnosed following an endoscopy when I did not respond to anti-ulcer medication.
My wife, Chrissy, and I are keen runners. These days we focus on long distance (marathon upwards) off road runs but both of us have places for this year's London Marathon. I will be deferring my place whilst Chrissy tries for another good for age place which she will get if she runs under four hours. She has managed that in the past three years beating my marathon best time by a minute or so a couple of years ago (least said the better!).
Chrissy will be running for Heartburn Cancer UK with the aim to raise funds for the charity and awareness of the condition.
If you wish to donate go to: http://uk.virginmoneygiving.com/CHRISTINEGORHAM
"It is good to be able to run for a smaller charity and one that we now have an affinity with”.
We have a few running events lined up to hone some speed as well as endurance - Cambridge Half at the end of this month and Salisbury 10 in March. I hope to tootle round those too assuming I feel up to it. As we ran our last marathon at Portsmouth just before Christmas Chrissy will aim to run a couple of longer distance runs before London Marathon on 24 April just to make sure the endurance legs are still there."
MARCH 2016 UPDATE
Chrissy ran the Cambridge Half Marathon on Sunday (28 February) - her first run that far since we did the Portsmouth Coastal Marathon a few days before Christmas - and she ran 1:48:53. That is a typical half marathon time for her and using the simple calculator of doubling your half marathon time and adding 20 minutes indicates a sub-four hour marathon is possible. So far, so good. As well as pounding out some more training miles Chrissy has the Salisbury 10 mile race in mid March and the Compton 20 mile race in early April on the calendar.
March 14th update
Chrissy ran the Salisbury 10 on Sunday in 1:21:58 so is staying on course for a sub 4:00 time in London at the end of next month. One more long event to do at the beginning of April and a few more hard training miles as the clock ticks down to London. Less than six weeks to go.
If you wish to donate go to: http://uk.virginmoneygiving.com/CHRISTINEGORHAM
Chrissy's preparations are on course for the London Marathon on Sunday week. Chrissy ran her last long run before the event participating in the off-road Compton 20 mile run on Saturday. Her time of 3:41:52 was quicker than in previous years maybe because John was not running with her! In broad terms 20 miles off-road equates to 25 miles on Tarmac so fingers crossed running a time of around four hours in London is possible. Good luck Chrissy!
LONDON MARATHON DAY
On a chilly but virtually perfect day for marathon running Chrissy ran an excellent 3:54:07 at the London Marathon on Sunday 24 April. Given her disrupted preparations for this year's event it was particularly pleasing to run a slightly faster time than last year and achieve a fifth successive good for age time giving her a place in next year's race.
Chrissy has raised over £3,000 in sponsorship for Heartburn Cancer UK thanks to some very generous friends, family and other kind people who have visited her fund raising page and left donations. Thank you to all of you as this money will be put to good use to help raise awareness of oesophageal cancer and fund research to treat the condition.
In the meantime John's treatment is going well, if tiring at times, and by good fortune he had a week's rest from chemotherapy last week so he was able to cheer on Chrissy from the side of the course and celebrate her success at the finish. All being well both John (who deferred his place this year) and Chrissy will be on the start line for the 2017 London Marathon. There's an incentive for both and great way to "get back to normal!"
I was diagnosed with oesophageal cancer in January this year. Since then I have been on a course of chemotherapy which should be completed around the end of June. It has been a six months of change. Aside from the surprise of the diagnosis it has been becoming accustomed to life regulated by clinicians and feeling steadily unenergised as the treatment progresses. Fortunately I have not suffered too many significant side-effects so I have been able to keep reasonably fit and healthy during the treatment.
I am a runner. Now instead of contemplating long runs each weekend of 20 to 30 miles it is more 3 to 4 miles maximum. Instead of feeling able to run any time it is managing to get out when I feel up to it. It is frustrating but adjusting to what I can comfortably do and recognising this has helped me as a coping strategy. Running helps to keep my mind and soul together.
There seem to be some parallels with cancer treatment and long distance running. It is a marathon not a sprint. There are low points, difficult and at times painful periods. The goal is successful completion and the route is a challenge to mind and body to achieving that. I know I am still in the early stages and that more, and unknown, pitfalls lie ahead but I find it helpful to meet these with mind to the finish line. I know it is not always easy! So there are just a few weeks to go with this course of chemotherapy then some tests and scans and probably a little rest before the next course of treatment. It is like the first feeding station appearing on the horizon.
Another month on and one course of chemotherapy nearly completed. Phew! I have a scan coming up and then a get together of the team looking after me in Southampton to decide on the next course of treatment. So far apart from having much lower energy levels I am lucky enough to not have had too many significant side effects once the immediate intravenous infusion and steroid ones have worn off - in about a week.
My running has continued to be compromised but when I do feel OK to give it a go I find four or five miles enough. Breathlessness in the first half mile flags that it is not just white blood cells that are reduced with the chemotherapy but also the oxygen carrying red blood cells too. What I have learned is not to push myself to the limit but to work within sensible boundaries. That also feels like a good philosophy for life. I suppose every new experience teaches you something and this illness and the toxic treatments are no different.
After a few months of losing weight I am getting back to a more typical weight. I am finding it easier to eat and I have regained my appetite. From a long time of sensible eating switching to a high calorie, high fat diet has worked well. Now I need to do some muscle toning. My legs are fine but my upper body and arms are a bit weedy. I am a typical runner.
Walking has become a more attractive proposition. You do not need so much puff and the pace is much more even. It has helped me to get some fresh air and exercise in proportion to my energy levels. I find being in open countryside uplifting. It is an excuse for energy snacks for those all important calories. It also has a feeling of achievement. My wife, Chrissy, has continued to run in some events since the London Marathon where she helped to raise some sponsorship running for HCUK. Even now when she does she flies the flag as you can see.
Another month on and a good one too as I have been treatment free since the beginning of July. Resting from treatment has given me the chance to recover some energy. Add to that I generally feeling better although it seems odd to feel OK but still be so unwell. However, life is about being in the moment and at least we have an opportunity to catch up with family and friends and get out and about.
I strongly believe that I feel better both physically and psychologically when I exercise. So far as running is concerned the last month has seen a bit more puff return, apart from going uphill. I have moderated my running desire as I need to retain some calories for weight gain. That has happened and I am back to around my normal weight.
It is good to be able to run up to 10k without too much effort. That is about my maximum. I will walk 21k in the same event Chrissy will be running 50k in a couple of weeks. That should help to take my mind off what I could have been doing. It will probably take me about the same time too. Walking seems to work well. We had a week on the Dorset/Devon coastal path earlier in the month and the bracing air (ignoring the rain showers) combined with feeling of freedom on the cliff tops was very therapeutic.
Life is currently a mixture of feeling good (that is when I stay in the moment) and feeling anxious about what happens next. That should be clearer in August. Until then I will enjoy the summer!
Since my last update at the end of July a lot has happened. And a lot of it has been good. On the medical front the scans I had in July/August showed marked improvement over the ones before and during my chemotherapy treatment. That fortunately means that surgery to remove tumour and some affected lymph nodes can be done. It offers the best chance of a long term outcome which helps to balance the fears and anxieties associated with the procedure.
On the personal front I made a good recovery from the chemotherapy. By the beginning of August I was getting my energy levels back and by the end I was more or less back to feeling fit and well. This has been reflected in my running - a personal barometer of well being - as I have managed longer distances comfortably which helps to maintain good spirits. Last weekend we did a seven hour run/walk in the Chilterns which is getting much more back to normal. Given that my surgeon doesn't want me to add any more weight it's also a good way of using any surplus calories.
As I've said before it is a curious feeling being able to live a normal life but know that that I'm seriously ill. I guess it's better that way but there is a part of me that thinks it's strange that I will have to made to feel unwell in order to be as well as I feel currently. I have occasional discomfort eating but experience tells me which foods are best to avoid.
The next phase is daunting but I believe that mental as well as physical preparation is the best approach. Being quite squeamish I am not too keen to explore the detail of the procedure. I expect pain and discomfort. I expect to feel frustration whilst I am recovering. I need to keep in mind that this is temporary and like the two thirds through a marathon focus on crossing the finish line and how good I feel then.
It's all about being as physically fit, as healthy, as positive and support to keep it that as possible.
As the countdown to surgery day gets into single digits I have found it beneficial to find things to occupy time and whilst some of those include me exercising I discovered just as much distraction and fun could be found watching others doing the hard work and simply observing with a "full fat" Coke (for calorific purposes only) in hand.
Such an occasion it was last Friday. A couple of months ago Mimi mentioned a corporate charity fund raising mudathon event that HCUK would be beneficiary of would be taking place in woods and through mud in deepest Surrey. As both Chrissy and I are keen runners it raised our attention levels. Mimi immediately banned me from even thinking of participating but the next best thing was to get Chrissy on one of the HCUK teams. In truth a mudathon has little appeal to me as anything more than a stile or a kissing gate on an off-road run is sufficient obstacle to make me moan and groan so I happily accepted the role of supporter.
A dry bright morning disguised what was to come. It's fair to say it ended a wet muddy morning for all who took part. Paragon Consulting who organised and excellently hosted the day had well over 200 participants mostly in teams representing their companies. Most of the participants were younger, and in many cases a lot younger, than Chrissy but she competed and completed the course and says she enjoyed every minute. A few photos below seem to reflect this.
The course may only be 7k long but its 100 or so obstacles from natural mudslides into muddy streams to clambering up the height of two shipping containers and scrambling down netting makes it a splendid opportunity for a "personal worst" over the distance. As a bucket list activity for me it doesn't make the shortlist but I would go and support Chrissy again! Thank you Paragon for helping to raise some much welcomed funds for HCUK and thank you HCUK for giving Chrissy the chance to try something new. I'm sure the scratches, bumps and bruises will clear up soon.
October was one of the significant months of my life. In fact it might be the most significant one so far. It began on 4th October when I was admitted to University Hospital Southampton to have my oesophagus and some lymph nodes removed. It ended with me still feeling a bit battered, low on energy and learning how to eat in my "new normal" life.
When surgery was first discussed my surgeon, Tim Underwood, said that he usually told his patients that they should prepare themselves in the same way that people need to in order to run a marathon and make a good recovery. In my case, having run well over 50 marathons, and hoping to run many more, he told me to stay as fit and healthy as I could. That was easier said than done when I went through six sessions of chemotherapy but on the good days between infusions and after I finished the course I ran as far as I could. In September we did two marathons on the Chilterns and Cotswolds. I was not only marathon fit but as fit as I could be going into surgery.
When Tim said prepare to run a marathon I think this is understatement. I am not sure even the Mont Blanc Ultra or Marathon de Sables would measure up to major surgery as the participation and recovery are far harder but the strategies to deal with them are similar. To prepare for a marathon you need to have confidence in not only your physical strength and endurance but also your mental ability to deal with pain and discomfort to complete the course. You also need support and encouragement from family, friends and advisers. Having a high level of support improves confidence and provides motivation. There are many similarities between preparing for, participating in and recovering from both a marathon and major surgery but there are also some differences particularly in recovery but let's focus on the similarities first.
For both being as fit as you can be and preparing for the distance is vital. With running you can practice, with surgery you cannot. Whilst chemotherapy helped me to "dig deep" the important message is “do not underestimate the distance”. Mental preparations for both have many similarities. You know there will be pain and discomfort. You know that this will be when participating (for surgery I include the immediate days afterwards) but you need to look beyond that. You will finish the race or you will be discharged from hospital. It is a cliché to say that pain is temporary but it is. Discomfort will last longer but by then you are into recovery.
Recovery is about listening to your body. With marathon running I have always had the philosophy that is often counter to advice from coaches and running publications that exercising shortly after the run helps me. Maybe that is why I have only been an average club runner but I have, without tempting fate, been largely injury free. Similarly following my surgery I have found it useful to walk each day to not only use some muscles, gain some fresh air and change of scenery but also feel I was doing something more "normal". It is all about helping to get back to a regular lifestyle.
The recovery from surgery is clearly more challenging. Your body has taken a battering and the level of physical repair is far greater than running a marathon or more. Patience is the key. The rewards for running a marathon and making a good recovery is looking forward to the next one. There the similarities with surgery disappear. I do not look forward to further surgery but if I did I think I have the tools to deal with it!
My recovery began the day after surgery and by the time I was ready to be discharged from hospital I had made major physical steps forward. The photos below show me the day after surgery, a couple of days later and the day before discharge a week after surgery. The clinical ans medical care I received was excellent although i was pleased to be going home. Since discharge I have been heavily reliant on the ever faithful Chrissy which will not help her half marathon times later this month let alone her Portsmouth Coastal Marathon time next month. Having been an ever present at that event since it started seven years ago I have reluctantly deferred my place until 2017. I will be there in spirit.
Thanks also go to my children, family and friends for their support and encouragement. Special thanks are reserved for our two cats, Peter and Denver, who are regularly by my side when I am resting and, as you can see, when I vacate my place on the sofa they keep my seat warm - they know you know!
Another month on and another month into recovery. Marathons never take this long! It is impossible to feel incremental improvements in aches and pains, energy and general well-being. However, looking back over a couple of weeks or a month and all is going the right direction.
The aches and pains from surgery are now occasional discomfort usually when my body is under stress - eating too much, eating too quickly, doing a little too much etc. Painkillers were dropped at the beginning of the month. Comparing my chest discomfort with running it is similar to the discomfort when tripping (perhaps on a tree root - a common thing for me) tensing your muscles in some way that may prevent a fall and then tumbling to the ground bouncing off your chest.
My energy levels are returning being able to walk further and even jog a little in preparation for Christmas (see below). What often saps my energy is not walking or doing an occasional yoga session - excellent for strengthening abdominal muscles - but being with people. It is curious that having visitors or meeting up with people on consecutive days seems tire me more than physical exercise.
These combined equal improved well-being. Add to that now being able and wanting to do "normal" things - simple things that give esteem - and things look and feel good. Like so much of this year getting back to normal or "new normal" when it comes to eating (frequently eating nutritious food in small quantities) it is a question of mental as much as physical fitness.
Now to running. Medical advice is "go for it" but listen to your body. If it hurts slow up or stop and try again later. I have resisted so far trying a run just yet having promised myself a Christmas Day run/jog/brisk walk round the block, a couple of miles of so at most. From little acorns mighty oaks do grow. I think my main challenge will be chest discomfort. I will not be running fast enough to stress my body but I looking forward to feeling free again and another tick on my normal list. In the meantime I have left running to Chrissy who completed a couple of half marathons in November and a multi-terrain marathon this past weekend in very decent times especially bearing in mind the toll that this year has taken on her. Next year we plan to be stronger together!
We wish everyone reading this a Merry Christmas and and Happy and Healthy New Year.
JANUARY 2017 UPDATE
It is now a year since I was diagnosed with oesophageal cancer. It has been a roller coaster of a ride that has had many lows (principally diagnosis, chemotherapy and surgery) and some highs (mainly feeling OK in the summer and making a decent recovery from surgery). The roller coaster took its physical, mental and emotional toll, on me and my immediate family, but I have found that a focus on the future and looking beyond the present as a mainstay has been a very useful tool.
The past month has been generally very good. Apart from some difficulties swallowing on occasions, my recovery and progress towards full fitness has been excellent. I am pain free, have little discomfort from the surgery and feel more energised. So much so that running returned to my agenda on Christmas Eve. OK, at the moment it may only be up to 10k at a sluggish pace but it feels like a major step back towards normality. As my energy levels increase and my stamina returns I hope to get up to half marathon in the next few weeks and have a crack at the London Marathon in three months time, having deferred my place from last year and having paid three separate entry fees. I may have stopped accounting for a living but it's hard to take the accountant out of the man!
Christmas Day I celebrated by running in my HCUK top to fly the flag (see below). Since then the weather has got colder so it's long sleeves and two layers. For the first time in at least two years I have worn running tights to run in so it is either a colder winter or I am getting too sensitive. T-shirt and shorts will reappear at the earliest opportunity.
One amusing upshot of the Christmas Eve run was the subsequent purchase of a compression top. I found as I ran, well jogged, my chest "rattled about" a bit so we popped to Cotswold and bought a compression top to hold my chest firmly in place. Whilst trying on the top I tried a jog round the store but was encouraged to use the treadmill. I am an outdoor runner and in any visits to a gym I avoid treadmills. Once on the contraption it didn't occur to me to press "stop" when I had done enough so I jumped and put either foot on the (non-moving) sides with the treadmill still running. Please note this is not the way to do it. The compression top worked well on the trails and in some ways too well, decreasing my ability to breathe comfortably but once released from it I am sure it will help my lung capacity.
Getting back towards full fitness has been most encouraging. It's also good to be able to get out and about. It's great to have visitors but much better to be able to return the visits, go walking or get to football or rugby matches. On the medical front following an X-ray swallow test to check out my difficulties swallowing I will need an endoscopic procedure to help widen or straighten my throat depending on what is causing the mild constriction. That sounds like fun!
For me February was a month of two halves to use the football metaphor. In the first half of the month I continued to improve in health and fitness from my operation. I was running more including the Portsmouth Coastal Half Marathon. Then the news in the middle of the month that I have cancer cells in lymph nodes in my neck. With that the second half of month took a bit of a downturn.
With follow up appointments I prepare for the worst and hope for the best. I suppose the results of the CT scan might be described as the best of the worst. The immediate view is that the rogue cells can be zapped by radiotherapy. However, before a final treatment plan can be drawn up I needed to have a PET scan and see my oncologist consultant. The first part of that is done and the second should be done in early March.
Bad news always knocks me back. What I show externally is not necessarily what is happening internally. The effect of setbacks is to start what might be called a mini-grieving process. I need a period of denial, anger, bargaining and depression before acceptance to face the current and immediate future with optimism.
I am told not to stop anything I am doing and it is no excuse to withdraw from the London Marathon in a couple of months time. However, the following day I got a head cold that converted itself into a chesty cough. Running and chesty coughs are not compatible. I am now back on the trails but as breathless as I was when I started running again at Christmas. The classic two steps forward and one back.
The Portsmouth run was not my quickest half marathon. In fact it was my slowest recorded half marathon. Chrissy, who accompanied me step by step, achieved the same. Slower even than the one we once ran in the Langdale Valley in the Lake District with its 1 in 3 hills. The time is irrelevant, running (or at least moving) for 13.1 miles was the achievement. Around nine or ten miles my puff started to fail me but I can report no ill effects. The weather was bitterly cold as can be seen from my apparel but for once at Portsmouth it was a tailwind on the two mile homestretch on the way to the finish line. I have some more longer runs planned in March which I hope I will be able complete alongside the to be revealed treatment plan.
Chrissy will be lining up beside me for the London Marathon as well as tackling a 50 mile run on the South Downs in early April. I will help her with support at feeding stations along the route this year. I am so grateful to her for holding herself back and supporting me. This weekend my daughter, Helen, is running the Cambridge Half Marathon in the colours of HCUK.
If you would like to visit her Just Giving page you can find it at https://www.justgiving.com/fundraising/Helen-Gorham
Another example of two halves also came in February:
I was saddened to hear of Steve Hewlett's death. His broadcasts on PM with Eddie Mair (and also in The Observer newspaper) were both illuminating and encouraging advancing the awareness of oesophageal cancer. I will miss him. His interviews on PM can be found at:- http://www.bbc.co.uk/programmes/p03m4q5s/episodes/downloads
On the other hand I was uplifted by Andrew Marr's documentary, My Brain and Me, available on BBC iPlayer until the middle of March. He covers his recovery and dealing with the residual effects from the stroke he suffered four years ago. He has a model attitude and one expression that stays with me is - "there is no room for self pity". That is so right, so right.
If you wish to donate go to: http://uk.virginmoneygiving.com/CHRISTINEGORHAM
HELEN GORHAM RAISES FUNDS FOR HCUK
Helen Gorham ran the Cambridge Half Marathon on Sunday 5th March 2017 and will raise over £2,000 for HCUK from sponsorship, cake sale and generous support from her employer's, Cambridge University Press, charity matching scheme. Helen says, "I wanted to help HCUK raise awareness and support research programmes into oesophageal cancer following my father's diagnosis of the condition last year. I am very grateful to all who have contributed to such a worthy cause.
"I was delighted to run 2:02:37 which is my best time by four minutes for the half marathon. "In the photograph I am celebrating with a can of alcohol free lager for refreshment that all runners were rewarded with at the end of the race although I think I deserve something stronger!"
There is still an opportunity to sponsor Helen on her fund raising page - https://www.justgiving.com/fundraising/Helen-Gorham
March has been a difficult month. Having had a couple of lymph nodes in my neck diagnosed as cancerous in February there have been a few weeks of planning and preparing for treatment. Treatment starts on Monday - 3rd of April - and will run for five weeks. Five days a week radiotherapy and weekly chemotherapy on Wednesdays. I will see plenty of University Hospital Southampton in April.
As with my treatments last year I am sure my anxiety will diminish when it begins. I am not looking forward to more chemotherapy but in five weeks times it will all be over. Small steps and looking beyond. It's becoming a mantra. I was not a stranger to the hospital in March either with consultant appointments, being measured up for my radiotherapy mould, being lined up for treatment, having my feeding tube removed and discussions with the dietician. My weight is barely holding up but hopefully that will stabilise and increase once the cancer is treated.
The mould making was a curious thing. Having warm soft plastic moulded on your face and head is not an unpleasant experience but then when it hardens and you are bolted (or attached by snappers) to the radiotherapy table to hold your head in the same position for each blast it feels rather more sinister. As it is only for ten minutes or so a day I am sure it will be bearable.
Removal of my feeding tube was a slightly surreal experience. Conscious but pain free with local anaesthetic and discussing running and medical awards whilst the procedure takes place as if nothing was unusual made it a peculiar event. The Upper Gastrointestinal team at University Hospital Southampton are nominated for an award at the British Medical Journal awards evening in early May for their enhanced recovery programme. As a beneficiary of this I hope they get the deserved recognition.
The patches that showed up in my face on my CT scan last month are not cancerous. That is great news. I still have discomfort in my cheek and will need to get it sorted as it is affecting how I eat and is giving me severe headaches. The silver lining to the jaw pain is that I can only eat very small mouthfuls which means I have to eat slowly that helps the little and often approach so I do not get too full.
I still have my eye on the London Marathon on 23rd April. I am back to running reasonably seriously. I did a 15 mile run in late March which was about enough for me. Our strategy, not withstanding any significant side-effects from my treatment, is to jog at least half the London Marathon and walk the remainder. We should be well within the cut-off time for road opening. Chrissy has qualified for the run as "good for age" but has been allowed to change her start to the mass start so she can accompany me every step of the way. We will be flying the HCUK flag and have a fundraising page where can be sponsored: http://uk.virginmoneygiving.com/team/johnchrissygorham
A double helping this time. I began five weeks of radiotherapy and chemotherapy treatment starting at the beginning of April which was completed a week ago so I thought I would wait until it was finished to include some reflections on that in this update.
April was a month of contrasts. Throughout the month I received daily radiotherapy and weekly chemotherapy treatment for the lymph nodes in my neck/throat area and after three weeks of treatment had a go at running the London Marathon. In between all of that as my body yielded to the treatment I had a lot of enforced rest and despite the marathon I think I have behaved sensibly needing to rest, trying to keep weight on and keeping as active as possible. Like so much of my experience with cancer treatment it is not that you feel ill it is just that it slows you up and whilst trying to do as much as possible it means listening to your body.
I was surprised much effect the treatment had on my energy levels. Immediately before starting the treatment I was able to run fifteen miles quite comfortably and was feeling more like I did between chemotherapy and surgery in the summer last year. My radiotherapy in its delivery was quite innocuous. My chemotherapy was much more tolerable than last year's heavy doses. As time went on I began to feel more lethargic but not exhausted.
I am always anxious about intravenous chemotherapy. It is something to do with needles, cannulas and drip stands. I know that there is nothing to fear but it is innate and unchangeable. What helped enormously this time was that the pre-medication included intravenous anti-histamine. That had a remarkable calming effect. It made it much more manageable. This time around they were shorter sessions too. I had no significant side-effects. Much, much better than my previous chemotherapy experience.
Radiotherapy was a doddle by comparison. The tight fitting mask bolting my head to the radiotherapy bed took a couple of sessions to get used to but once mastered with a combination of relaxation and knowing it is only in place for ten minutes or so made it a quite bearable. As with the chemotherapy nurses, the radiotherapy team at University Hospital Southampton are excellent at making the appointments comfortable and friendly without any loss of professional standards. I would not say that I looked forward to the five times a week for five week sessions but building a relationship with the team certainly helped.
It also struck me how many people are receiving chemotherapy and radiotherapy. Virtually all are cheerful and friendly. Maybe it is the spirit of "we are all in this together" or "it has to be done so let's get on with it" but again it makes the regular appointments more tolerable. I found the cumulative side-effects subtle in their development over the five weeks. By the time I attempted the London Marathon I found I could not that far run five/six without starting to run out of puff. By the completion of the treatment I was washed out.
If you add on the time that it takes to get to hospital to arrive in good time, get parked and then return home a radiotherapy appointment of ten/fifteen minutes treatment becomes at least a three hour exercise. That in itself is tiring. Chemotherapy days were a full day exercise. It took over our calendar for five weeks. So, when the treatment ended early in May I think the accumulated side-effects plus the the realisation that we did not need to do anything made me relax. Sleep took over. As well always getting at least eight hours sleep at night I was having an afternoon nap and still feeling tired come seven o'clock in the evening.
Along with tiredness being a side-effect I felt nauseous, was nauseous, had/have a sore throat making swallowing uncomfortable, very loud hiccups, a cough and my skin where the X-rays were concentrated burned to make it sensitive to touch. Painkillers help with the swallowing as weight loss is something frowned upon during treatment. Anti-sickness medication helps with the nausea. All the side-effects have been manageable. I was warned that the full side-effects are felt in the two weeks after treatment has been completed so I am hoping that in a week or so I will start to feel better. I feel better now than I did a week ago so I have no reason to diminish my optimism.
The only other thing I think I did in April was the London Marathon. Chrissy had warmed up for that a couple of weeks before by running 50 miles on the South Downs in twelve and a half hours. Hats off to her - my running inspiration. My preparation was much more gentle. I was determined to give the marathon a go. Last year I had to defer my place and for much of last year 23 April 2017 was target date. We are very grateful to the organisers to allow Chrissy to change her start from the Good For Age to the Club start where I had my place so that we could run together.
As I said above before treatment I was starting to get some endurance back into my running. That combined with some adrenaline on the day and run/jog/walk strategy made me think I could complete the course. However, on the day it was rather different. After around five or six miles I was struggling. At ten miles we decided that trying to get to halfway was as good as it was going to be for me. At eleven miles looking out for an ex-work colleague we spotted and were spotted by my daughter Helen (of Cambridge Half Marathon fame) and her partner Matt. I said I was going to try and get to half marathon distance and they said that they would meet me there. That hugely relieved Chrissy and when I retired she waited with me until Helen and Matt were able to look after me. Chrissy completed the course with one of the best positive split times at her four hour pace. It had taken us nearly three hours to get to halfway. I am so grateful for her support. The day ended well as my son Richard and his partner Sarah were close by halfway so we all went for a cup of tea in a cafe I used to go to when I worked in the City and then we all headed back to meet Chrissy at finish and having been invited to the Cancer Research UK reception were able to celebrate our efforts in the comfort of the British Academy.
Here are three photos from the day, showing me giving my best in a very crouched running style, more upright walking and discussing how much more I can manage and relaxing at the end when Chrissy and I were reunited.
The really good news from the London Marathon is that we have raised over £4,000 with gift aid for Heartburn Cancer UK. Thank you to all who sponsored us. The other good news is that despite only completing half the course the organisers of the London Marathon sent me a medal and a t-shirt. I thank them for their generosity and will treasure both as much as any reward for running I have received.
At the end of the first week in May I was asked to participate in the press release of Tim Underwood's, my surgeon and HCUK trustee, announcement that he has received a £1.4m grant from Cancer Research UK to research the biology of oesophageal cancer with the aim of finding less invasive treatments for the disease and to be able to offer an alternative to surgery which, of course, cannot be offered to around two thirds of patients presenting with the cancer. This involved local radio and regional TV interviews with us both, me being asked what I thought from a patient's perspective. Not only was it great fun but more importantly helps to raise awareness of oesophageal cancer.
I am hoping that from next week I will get back to running. Round the block, down to the river sort of short distances. I have an eye on trail half marathon in five weeks. Chrissy is doing the full marathon but that might be a bit too much for this soon (this is head over heart talking) plus with starting an hour later we will probably finish around the same time! Until next time enjoy the longer days and sunshine. You never know you might be tempted to buy a pair of running shoes . . . .
This is another double month update. I was all ready to write an update a month ago when I was rushed off to hospital to have emergency surgery. Since then I have spent three or four weeks recovering and feeling pretty sore and washed out.
Up until towards the end of June I was slowly recovering from the effects of the combined radiotherapy and chemotherapy I had for the cancer found in my lymph nodes in my neck. I was surprised how much the effects of the treatment stayed with after I had the last treatments of both in early May. I knew that the accumulated effect would increase for a couple of weeks afterwards (I can vouch that it did) but thought I would rapidly feel better after that. The rapid bit was taking a lot longer than I wanted it to.
Back to the reason why my update has been delayed. On the evening of Tuesday 20 June I had severe tummy ache and persistent vomiting which lasted through the night. We called the NHS 111 who thought I needed hospitalisation but no ambulances were available. We were called by a duty doctor by which time the pain was subsiding. However, I felt worse in the morning and managed to get our GP practice who told Chrissy to fetch the car and take me to surgical assessment at Southampton General where I was admitted. Cutting what felt like a long story short I had a CT scan on Friday and was added to the emergency surgical list to operate for a blocked bowel. I had my operation on Saturday afternoon. Fortunately the blockage was caused by scar tissue and adhesions from my oesophagectomy last October. A massive relief that nothing sinister was found. A week or so later and eating again after eight days of drip feeding before and immediately after the operation I was home having lost more weight and feeling pretty battered.
Whilst I was in hospital I had CT scans of my torso and my face. I still have a painful area around my left jaw that gives me a constant nagging headache and face ache down to my neck. The pain increases when I eat and I am limited to opening my mouth to around 2cm. Wide enough for a finger of Kit-Kat but not for even a shrinkflation Mars bar. This is not helpful when you are trying to eat to gain weight. Eating is a long winded process that often involves inelegant shovelling of food into my mouth. Accentuating the positive it does mean I eat slowly which helps with the mini-stomach I now have. Small and frequent feedings are the continuing mantra. A case of every cloud having a silver lining perhaps.
We got the results of the CT scans I had done last week. First the good news - all looks clear this time on neck, chest and abdomen. Secondly, the not so good news - my left cheek shows "suspicious cells" and will need a couple of weeks radiotherapy. That will happen in the middle of August and will, all being well, sort out the pain, restriction on jaw movement and zap the nasty cells. Therefore, August looks like a month of combining carrying on trying to get more fit and active after my bowel operation and lying on a radiotherapy bed pinned down with a face mask all for the greater good.
Where I am at the moment feels a little way off running. I hope that once my stomach has healed I will be able to get out around the village and across the country park. It will be a while before I am starting events again with Chrissy. She has a few lined up over the next couple of months or so. I will support her on the various distances she is running from 10k to 50k. I might, if I feel OK, offer to marshal at a couple events which will bring me closer to the action.
This feels like a year of setbacks. I started the year recovering well from my oesophagectomy but with the radiotherapy and chemotherapy that I needed for the lymph nodes in my neck followed by the bowel operation it has felt like one step forward, one step back. Each setback happens when I am in a weaker position than the previous time. Fingers crossed for a bit of break after August and a chance to recharge the batteries. All in all it is a tiresome process that has been physically, as well as mentally, very wearing at times. I still look forward to getting my life back to what Tim, my surgeon calls the "new normal" and the sooner that happens the better!
August has been a month of face ache and radiotherapy. Hopefully the latter will solve the former. I had two weeks of radiotherapy and now begin the period when the treatment takes hold and does its business. My oncologist tells me that I will feel worse before I feel better. Luckily I have had minimal side-effects which has meant that we have been able to get out and about when hospital appointments and the weather allowed.
The daily trips to hospital are wearing in themselves. Luckily we had many early morning appointments that a) avoids the worst of the traffic, b) makes car parking at Southampton General quite simple and c) gets the dosage out of the way to leave most of the day free. The radiotherapy team at the hospital are a cheerful group and whilst no one would choose to go there unless it was necessary it is as enjoyable as any hospital experience can be. You can add on to that the League of Friends tea bar offers two rounds of toast and Marmite and a cup of tea for £1.80.
I am pretty much recovered from my surgery in June and once we get into September I will try getting back to running. Chrissy is steaming ahead of me in marathons now and has a few more planned over the remainder of the year. I will not be up to those distances quite yet but after three months of enforced rest it will be good to put on running shoes again. Rather depressingly I just read an article that lists how fitness drains away when not taking regular exercise. We did a ten mile walk on the undulations of the South Downs and I have done some cycling so feel that I am slowly (as usual too slowly in my view) getting some fitness and endurance back.
My weight stays stubbornly low but is consistent. It would be good to gain, say, five kilograms. My dietician is happy with my nutrition and daily calorie intake. With a small stomach that is just as well as eating more would be a potential problem. My stomach, particularly following the bowel operation, can be erratic. What I eat one day upsets me the next. How much I eat one day seems a challenge the next. It is a question of listening to your body and working with it. Eating in a social setting is often a problem too. Sometimes I feel comfortable, sometimes I do not. The only thing that is consistent is inconsistency!
The next medical steps are a follow up appointment to see how the radiotherapy has worked its magic in October and the inevitable CT scans sometime in November. It is good to have September off. We I'll mean that we can focus on doing things without the background of hospital appointments.
In a more reflective mode this year has felt like a bigger challenge than last year. Last year was focussed on two major treatments but most of the time, apart from the uncertainty on whether surgery was possible in the middle of the year, all was going towards a positive outcome. The surgery knocked me back physically but after making good progress towards the "new normal" all was heartening. This year has been a series of "one step backwards, one step forwards" at best. Each treatment leaves me a little weaker physically and challenges us mentally to deal with the next. That makes having a month off hospital appointments feel like real break. We will enjoy it!
September was to have been a month without a trip to Southampton General Hospital. However, late one Sunday night/very early one Monday morning unusual stomach pains meant we beat the rush hour traffic with a visit to the Emergency Department. A few hours later after some tests all was revealed to be looking OK and we trotted home again. We are undoubtedly more sensitive to anything that feels out of the ordinary and caution is the best approach. Each time we learn a little more so we should not need to trouble the medical professionals if the same symptoms arise.
Otherwise September has been a better month. I feel better, recovering well from surgery and radiotherapy. Luckily the side-effects from the latter have been minimal. If you are pain free and feel reasonable you can ratchet things up and approach life positively and with renewed vigour. I began running again this month and we have been able to get out and about with free from hospital appointments dominating our calendar.
Running is hard. There are two things that restrict me – lack of aerobic capacity and stomach discomfort when my feet hit the ground. You have to be able to breathe comfortably and your feet hit the ground regularly when you run so it is a bit of restriction on distance and pace. I can build up the former and I am less concerned with the latter.
I am eating slightly better although my jaw has not improved noticeably. Maybe I am more accustomed to it and learning to manage the limited opening better. I still stick to things that I can slurp (soup, pasta dishes rice dishes etc.) or fit in through the post box opening. Cheese and biscuits remain a big favourite and I am partial to dark chocolate digestive biscuit which also fits perfectly.
I think my weight is steady. I am not allowed to weigh myself as I may become obsessive in analysing it. You can take the accountant away from the spreadsheet but you cannot take the spreadsheet away from the accountant. I fulfilled my analytical desires in August with recording my painkiller intake but now I no longer need them on a regular basis I am at a bit of loose end on the Microsoft Excel front!
As I mentioned we are getting out and about and seeing a bit more than Hampshire. We had a weekend in the North Downs (OK it was on the Hampshire/Surrey border) where Chrissy ran the Farnham Pilgrim Marathon. She is running well and heading onwards towards 100 marathons, her current target. The picture below is her finishing number sixty one under rain filled skies at Farnham. We made it for a post-run cup of tea before it rained although not before the changing tent Chrissy was using was being dismantled with her still in it. She has some marathons planned before the end of the year. More marathons, more places to go!
On the medical front we are off to see my oncologist next month and see where we go from there with scans etc. And so it goes on but with positivity and hope of a break from “one step back, one step forward” 2017 so far seems to have been. More on that next month.
October is a happy anniversary month. It is a year since my oesophagectomy and I am feeling as well as I have done since the morning of the operation. I feel I can do all that I want to with the exception of running long distances. It still amazes me how the body can cope and recover from what is thrown at it.
There have been no more stomach glitches this month although that remains the sorest area of my body. I think I have generally mastered feeding and drinking now. If I resist doing both together that helps. Also I feel I can judge what is sufficient to fill my reduced stomach most of the time. However, curiously, and annoyingly, two days are rarely the same. One day no discomfort but discomfort the next. I think this is all done to either test me or not make me complacent!
We had a check up appointment with my oncologist at the beginning of the month. He is pleased with my recovery from surgery and the most recent blasts of radiotherapy. My mouth opening is still limited but on a positive note that slows down my eating rate. I still avoid toffee and such like and most nuts as I do not fancy having any dental work done until I can open my mouth a bit more. I expressed my concern that I am not putting on weight however much I eat. Given that I have enough energy and remain generally well he said he was not concerned and that I may not gain the weight I have lost during the past year – approximately 12 kilos. That was a relief and has reduced any anxiety I occasionally got from trying to shovel in calories with no resulting gain in weight.
I am lined up for the next CT scan in early November but before then we have a week on the Gower in Wales to look forward to with the expected wind and rain in our faces on the coastline and a nicely heated holiday cottage to retire to each evening. Depending how undulating it is will see if I can stretch my five mile run to six, small steps to get back all being well to half marathon running next year. You have to have a plan but, as we have learned, be prepared to change it!
Chrissy is still running well. Back to back marathons across the New Forest and when I cheered her home on Sunday on her second she was smiling which is testament to her running well. Along with my son and daughter we are all going to have a go at next year’s Southampton Marathon (Chrissy) or Half Marathon (Richard, Helen and I) in April. It will be Richard’s debut run but with Helen and I to get him round what can go wrong?
The roller-coaster ride continues. After an optimistic October the CT scan I had in November revealed a couple of issues. One issue half expected to be truthful; some suspicious cells in the lymph nodes underneath my left jaw. The other issue was that there is some evidence of cancer cells in other parts of my body. At this stage they are tiny so the plan is not to consider intervention unless they show rapid growth and raise a medical red flag or I get pain from them. At times like this staying in the moment really helps. We keep the mantra, "you cannot do anything about the past or predict the future" rolling around in our minds. By the way I do not think you have to have cancer to find that helpful.
We had a very decent few days on the Kent coast before I had five sessions of radiotherapy on my jaw. Let's face it that is better than the five weeks on my neck/throat in April/May and the ten days on my cheek in August. When we arrive in the Radiotherapy department at University Hospital Southampton we feel we are amongst friends. They are a great group of people and have an uplifting approach that is helpful when it is not just the treatment and its possible side-effects that get to you but also being tired by the daily visits.
I have now completed the radiotherapy course. A week has passed and no obvious side-effects so far. I feel a little weary perhaps, that's about it. It will be a couple of weeks whilst the radiation continues to work it's magic so I hope I do not speak too early. I did lay off running whilst having the treatment but that was as much to do with an aching leg. I have had one run on a deceptively bright and sunny morning. It is only when you almost slip on black ice that you realise how chilly it is. Ah, the joys of running. Bring me more joy!
Chrissy is still bashing out the marathons. One near Deal on an old coal colliery site that is being turned into a country park (it will be lovely when it's finished) and two last weekend. On Saturday over the tank tracks (stick to the course, beware live ammunition) at Bovington in Dorset and on Sunday at the multi-terrain Portsmouth Coastal Marathon. She has no more marathons lined up until 2018. A real Christmas break for her!
As is traditional at this time of year a moment of reflection on the year past. In many ways it has been as challenging for us as last year. Last year was all about major treatments and recovery. This year has been one of one step back, one step forwards (at best). However each step back has been when I am not fully recovered from the previous treatment. Physically it has been demanding and mentally it has been about dealing with what seems like continuous issues rather than "simply" recovery from the oesphagectomy at this time last year.
Another tradition at this time of year is to make New Year resolutions. Here are a couple of sort of resolutions we intend to stick to: - Enjoy what we are doing and do what what we enjoy; and
- Do not let the opportunity pass
A very, happy and peaceful New Year to all!
Why Heartburn Cancer UK Exists
As a recognised and trusted authority in the field of Cancer of the Oesophagus, we know that with your help we can make significant inroads in the Prevention, Detection and Treatment of this disease by focussing on 5 key areas of action:
Education leads to a lasting change. We are working hard to influence public and social policy, to lobby politicians, to campaign for change, to promote greater collaboration amonsgt the medical profession, the public and the government. We are already in the process of developing a network of effective partnerships with businesses, the pharmaceutical industry, medical professionals and other like-minded groups. We intend to affect change and influence how this disease is perceived, detected, diagnosed and treated.
Our aim is to significantly reduce incurable oesophageal cancer in the UK.
Our renowned medical professionals, all experts in the field of oesophageal cancer, will continue to play a key role in research and trials designed to reduce the incidence of this appalling disease.
Early detection rates are vital to ensure a positive outcome. We are creating a communication network to facilitate greater awareness of the importance of diagnosing the disease early, identifying the symptoms associated with the disease and seeking medical help quickly. Oesophageal cancer affects everyone regardless of their race, gender or age.
We will ensure consistent support is available to everyone affected by Barrett’s Oesophagus, regardless of who they are and where they live. Information and advice is available to all those affected by the disease and to the people who support them on our website or by telephone.
We need your help to bring this to the attention of your employees, friends & family or indeed anyone who might suffer from persistent heartburn!
You can make a difference perhaps you know someone who has suffered from persisitent heartburn, Barrett’s Oesophagus or Oesophageal Cancer. Perhaps you run an organisation and would like to help, why not make it your company’s corporate responsibility?
We are not content with standing still, we are determined to develop and grow a sustainable UK charity which continually re-invests to maximise the impact of its resources.
Working with UK businesses and voluntary organisation’s, our outward facing collaborative approach will ensure we are the first place to come to for reliable up to date information about Heartburn, Barrett’s and Oesophageal Cancer.
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All you need to know about Heartburn, Barrett's Oesophagus, Oesopageal Cancer. If you need support we can offer advice, please contact us on the "Ask our Doctor a Question" form, or you can join one of our Local Support Groups. You can also buy Heartburn Cancer UK Clothing and other HCUK Merchandise to help Raise Awarness and of course we would very much welcome a Donation to keep the charity able to carry on offering free advise and Raising Awareness, Changing the Future and Saving Lives.