OK, so I'm desperately new to this blogging malarkey, but the timing is good for a number of reasons and it just feels 'right' to begin now. Call it therapy, if you will.
This summer I finished a massive health and safety/environmental prosecution following 4 1/2 years of really intensive work and an eight week criminal trial. We won insofar as we were successful in getting guilty pleas or verdicts in a five-handed prosecution. The case made legal history, was in the papers and on TV. The case had been going on since December 2005 and required a hell of a lot of my time which meant being away from my patient wife and my two young sons far more than I should have done. My fitness also took a back seat too, something which I have worked hard at (and enjoyed) in the past. The intention was always to kick back after the case finished - take a well-earned break with the family and get back to surfing and training. It was also my 40th birthday during August, so we had some fun planning a big party. So much for that plan...
In July, and whilst I was actually in Court in London - I was told via email that I had skin cancer: a malignant melanoma measuring 2.7mm in depth. I had had a mole in the middle of my shoulder-blades which I couldn't see but had raised up some time previously. My wife had spotted it one weekend and we began the usual "you must get that looked at" and me putting it off "yeah, yeah - after the case" and so forth. Eventually I gave in when she made the appointment for me. My doc took one look at it and said that it needed to come off ASAP. That was done, and initially in my mind that was it. Small scar- move on, no problem. However, and I suspect a small part of me probably knew but didn't want to admit it - that was just the removal for testing...
That day in Court when I received an email from my consultant to say that analysis of the tissue showed that I had skin cancer - it was like someone had taken the floor away. I have always been strong and healthy, how the hell could this have happened? Well, as I have come to learn - cancer doesn't quite work like that. It really doesn't give a shit whether you are 9 feet tall and bullet-proof; you are fair game regardless of size, health or fitness. I am fair-skinned and a child of the 70s - a deadly combination in terms of sun exposure.
My immediate concern was for my wife at home. I had to tell her ASAP, but felt distraught that I wasn't at home to comfort her and talk it through properly face-to-face. I was worried how she would react. However, I seriously under-estimated how strong she was. She dealt with it in a "OK, let's get this done" kind of way which helped me emotionally far more than she could ever know. Not being able to do anything straight away, I stayed up in London for a couple of days to finish that part of the work I was doing with my work colleagues who were all fantastic. In particular, my lead barrister reacted in just the way I hoped he might - we talked it through and then moved on to distract me from dwelling too long on things. My boss was also great - immediately giving me the time and freedom to deal with it however I wanted.
I bowed out of the very last Court hearing day (4 1/2 years and I missed the best bit...) and went to see the consultant who had removed the mole initially and had given me the bad news. I will never forget driving with my wife to that appointment. By the time I got to this hospital - I was wound up far too tight. I walked into the consultant's office and promptly broke down. Most unlike me, but he must get to see that a fair amount in his job. I really didn't know enough about skin cancer and the implications at that stage - all I knew was that I had the big "C" and that was terrifying enough on its own.
I resigned myself to a whirlwind of medical appointments. I was told that they would have to do a wide-excision on my back, removing a larger section of skin than had originally been taken. This would involve a skin graft from my leg. I was told that the skin graft would be the most painful bit - leaving a raw patch of flesh on my thigh. I was also offered a sentinel node biopsy - to check whether the cancer had gone further. This procedure was offered as a "belt and braces" - not all hospitals or consultants do it and medical opinion is divided as to whether its worth doing. One of the benefits of having private health-care is that things happen very fast. Within a day or two of my appointment, my plastic surgeon called me to arrange the surgery in Exeter. It was going to happen quickly to fit in with his schedule. Whilst I am very lucky to have private health care to create such speed - it really does allow you to get into the mindset of "right, now lets do this" - in effect postponing any kind of mental or emotional reaction to what is going on. It's almost like it's happening to someone else.
After discussion at home, we decided to tell my oldest son (who is 11) what was going on - but in a low-key non-alarmist kind of way. My youngest (6) is still too young to really understand. I remember telling my eldest son that I had skin cancer one Sunday whilst we were at the beach together - all the time repeating to myself over and over "keep it together". Whilst there was obviously shock on his part - he knows about Lance Armstrong's story and his approach was very much upbeat. His thinking was along the lines of "well, if Lance can do it and his cancer was worse, then my Dad can do it too". This cheered me up hugely. My eldest is a smart kid - he knows when something is up. I also know he tries to hide his worry and concern for me.
I travelled up to Exeter for the surgery. I have had other operations before, so wasn't too daunted by the process - it was mainly the reason for the surgery that I was most concerned about. I met my plastic surgeon who explained what he was proposing to do whilst doodling his plans over the skin on my back and leg with a black marker. He explained that he hoped to avoid a graft, but because of my wide back the skin was quite tight and he was concerned he might not have enough material to work with. I also had a scan to identify which were the "sentinel" lymph nodes. This involved injecting a radioactive dye into area where the mole had been taken from and then scanning me to see where the dye drained to. I was told that I would be radioactive for a short while and that the surgeons would use a medical Geiger counter to locate the nodes that they needed to remove and examine. As the mole was almost exactly in the middle of my shoulder-blades, the dye drained to both sides equally meaning that I would have to have surgery on both sides as well as my back.
My main recollection was staying pretty calm. This lasted until the anaesthesia room prior to the surgery, when the theatre nurse tried to reassure me that I would be around to see my sons graduate from University which managed to crack my façade a bit. The surgery was long and it was quite late at night when they brought me round again in the recovery room - my plastic surgeon leaning in to tell me that he had managed to avoid a graft. They had given me some pretty hefty medication and for the next 10 hours or so, I wafted in and out of consciousness. I remember hating that I had an oxygen line up my nose and that I was STARVING - not having eaten for almost 24 hours. My wife intermittently fed me shortbread whilst I tried to stay awake. When I eventually came around properly the next morning - I found that I had large dressings under each arm and a pillow-like one on my back. My consultant explained that he had avoided a graft by doing a "Z" shape incision down my back. I was intrigued to know what it looked like - but appreciated that it was probably none too pretty at that stage. The nodes had been sent off for testing and would be back within 10 days or so - but the consultant explained that there was nothing obvious to feel in them. I was discharged home pretty quickly thereafter and I settled back at home - concentrating on healing up ASAP - but slightly confused that the dressings would not be changed for 5 days or so.
Over the next days, I felt OK - but slightly uncertain about how much I could move. Playing it safe, I decided that least movement was best. It was about four days or so later that I knocked my right elbow trying to get something. It was excruciatingly painful and I yelled in shock - had I torn a stitch open? I hoped not. I also smelled pretty ripe - I assumed the niff was caused by the dressings and the fact that I hadn't had a proper shower in a while. It was only during the next follow-up appointment that it was found I had bacterial infections in all three wound sites. They were sufficiently serious that I was pulled in to hospital again to be cleaned out under anaesthesia - not the nicest thing.
I was discharged from hospital again, this time with antibiotics - massive doses of Clindomicin (later described to me as the pill equivalent to Domestos). The seriousness of the situation was brought home to me when the District Nurse at my GP surgery took one look at the wound sites and the antibiotic dosage I was on and could only say "Oh wow". "Wow" is definitely not a word you need to hear from a medical practitioner of any kind, ever. My wife later told me that I was not the prettiest she had ever seen me... I started to respond to the antibiotics eventually and went back and forth to hospital for wound care. This commenced in rather dramatic style when my plastic surgeon pulled out the first lot of packing from the wound in one side. I suspect that he forgot that I wasn't anaesthetized - because it really, really hurt. I put a lot of emphasis into that "OW!"....
One of the complications of infection is that the wounds then have to be left open - they can't be stitched back up again. This meant that I would have to have lots and lots of wound care and learn to be patient. The wound care team at Exeter were fantastic. In particular, one nurse just seemed to "get" me. She explained patiently what she was doing and why and taught me that dressings are better left on for as long as possible, rather than taking them off to change them. She explained that silver has anti-bacterial properties and that she was using silver compound dressings in the wounds themselves. I also learnt that it is possible to heal too quickly and sometimes its necessary to slow it down. She understood too the stress that I was under when I had psyched myself up for the lymph node test results and then found that they weren't ready. She even checked photos of the wound sites that I e-mailed her from France and advised on what should be done next. All in all one of the best (along with my big sis) nurses I have come across working for the NHS. Thanks Lorna.
The lymph node results came in later than expected. A small malignant deposit (2.5mm) had been found in the node from my right hand side. This meant the cancer had spread and that I would to have further surgery to remove all the lymph nodes from my right side. To be honest, at the time I got this news - I really didn't know enough about lymph nodes or the significance of the results. I knew it was bad news, but beyond the need for further surgery, I didn't know much. Without question, it was an extremely worrying time and not just for me. It is sometimes worth standing back and realising the effect that this news has on the people around you - parents, partner and others. It can have a profound effect, and it is easy to lose sight of that and focus inwardly.
There were practical arrangements to be made and I sent emails to my bosses at work explaining what had happened and what was planned. This would mean a prolonged absence from work and I had to fill in paperwork sent from the HR department for salary protection insurance in the event I could not return to work when I hoped to. My bosses at work all reacted in a great way - in effect giving me however long it took to get it sorted. Major thanks are owed to them for their understanding.
Given the positive lymph node result, I had a CT scan to see whether there was anything elsewhere in my body. This was an interesting experience. I was given a weak lemon mixture (Simon Quinlack - duke of hobby!!) to drink which would show up on the scan. This was pretty revolting stuff - not enough lemon to taste of anything nice and the consistency of wallpaper paste. No avoiding it, so I had to chug it down. When it was my turn I went into the room expecting something similar to a MRI scanner - a long narrow tunnel into which I would be moved for the scan suffering from mild claustrophobia. Instead, there was a bed around which a large ring was moved. This was not so bad. A cannula was put into my left hand for some further dye and the scan was done in various sections - head and neck, chest, groin etc. This was notable mainly for the odd sensation caused by the dye being injected. On occasion a warm feeling would flood around my neck and down from the groin into the insides of my thighs. The nurse assured me that this was the dye moving around the body and was not me wetting myself.... Following the scan, I agreed with my surgeon that we would discuss the results of the scan on my return to the UK. No point receiving bad news if I couldn't do anything about it on holiday...
After much deliberation and discussion, we decided that we would go abroad to France as we had planned before I had been diagnosed. Not only could I do with some healing time before the next bout of surgery, my surgeon could not physically do the work for a month in any event. I was assured that there would be no additional risk to me as a result of the delay - so we decided to go. I would be lying if I didn't say that a major consideration was the need for my wife to get away for a change of scenery. She had been looking after the kids alone while I had been away for work and was under a lot of stress. I could see how much stress just before left for France.
Going away meant that I would have to have pretty intensive wound care before I left and my wife would have to learn how to dress the wounds on my back and sides. For a change of scenery, we stayed at my parents' place in Taunton for a week. They kindly looked after the boys for us whilst we travelled every couple of days to Exeter and Lorna and her team did their best to heal me up. As I couldn't see what was happening with my back, I had to sit there and listen to Lorna explaining to my wife what was there, what it meant and how to deal with it. As my surgeon had not done a graft, it meant that in places the skin was very thin - with no supporting structure underneath. In effect, hollow. Eventually my body would naturally fill this in from below, but it would take a while. To her credit, my wife learnt a lot about wound care and was one hell of a nurse whilst we were in France. We were given a load of dressings and medication to take with us to cover all eventualities. When we left the UK, my sides were pretty good, but my back was still far from healed.
We all really needed that holiday. I didn't really realise how much until I fell asleep on the plane even before we took off. I then slept (waking up for meals) for approximately the next three days and nights. On the fourth day, I woke up feeling refreshed and much better. I was finally healing. The holiday was always going to be a little different - not only was I not going to be able to sit out in the sun (I didn't really want to now anyway) but whilst I was healing I could not swim with the boys in the pool. I missed the rough and tumble of playing in the pool with the boys most of all. From the comments they have made subsequently, they felt the same way.
My wife's family came out to France to join us and we concentrated on having as good a time as possible. My wife's Mum and Dad have been fantastic throughout - looking after our two boys whenever we had to get to appointments or during my stay in hospital. They took that worry away from us completely - I'm not sure how we would have managed otherwise.
About a week into the holiday, I received a call from a blocked number on my mobile phone. Unless I am expecting a call - I tend not to take such calls and I let it ring off. If it was important, they could leave a voicemail. I was on holiday after all. About 5 mins later, I received a text from my surgeon. When I realised who it was from, my stomach lurched and I got that "zoom in-pan back" feeling (remember that bit in Jaws when Roy Schneider realises there is a shark in the water when he is sitting on the beach?). I thought we had agreed to leave it until I got home. I had to read the message 5 times before I finally took in what it said - the CT scan was clear. Nothing of concern anywhere else. Enormously relieved, I forwarded on the text to my wife who was out at the supermarket at the time. I soon got a reply saying that she was sobbing in the frozen food section.... I distributed the news as widely as I could and messages of relief flooded in from all over the UK. Two bottles of champage arrived from my parents in the UK. We had a bit of a celebration and enjoyed my 40th birthday party with an enormous plate of seafood. Later my parents came out to France and took us all out for a wonderful meal.
The rest and the heat turned out to be pretty much what I needed - the healing process was well underway and by the time of our return to the UK, my sides were healed and my back was 99% there. I managed to get into our pool on the last couple of days of the holiday (wearing a rash vest) and sent the photo to Lorna thanking her for her hard work.
Whilst I knew that I was going back into surgery - I was mentally prepared for it and the day before, I took the opportunity of visiting my work colleagues in the office to take them some pastries. This was important to me - not only to show my face (I hadn't been in to the office since the start of the trial in April and it was now the end of August) but to remind myself that I still had a career waiting for me. I didn't want my absence to turn into some kind of mental block about going back to work. As it turned out, everyone was very welcoming and whilst I didn't stay long, I'm glad I went in to see everyone.
Early the next day, we travelled up the now very familiar road to Exeter and booked into the hospital for the axilla-dissection surgery. I was pleased to note that my surgeon had remembered that I had asked him to ensure that I could raise my hands up above my head post-surgery. I had emphasised to him some time previously that I wanted to be able to swim front-crawl, paddle my surfboard, hang from my hands and lift weights above my head. He did his doodling trick again - this time in my right armpit, adding zig-zags into his planned incision to allow flexibility post-operatively. We also sorted out what would happen after the op - as I would have a drain in the wound site, I had the option of staying in hospital or taking the drain home. I didn't fancy the idea of taking a drain home and my previous experience of infection made me opt for the hospital stay. At the very least I would have someone who could administer antibiotics quickly without the need for a long journey. I would eventually end up in hospital as an in-patient for 5 days.
My anaesthetist explained that it was a rather uncomfortable operation to have and he planned to fix me up with an additional cannula for a morphine pump should I need it. I have had morphine post-operatively before - and knew the kind of pain he was talking about, so agreed. I would therefore have two cannulas (cannulae?) in my left hand - something that I later came to dislike with some intensity. No matter what you do, they always end up catching on things.
Waking up later in a fog from the anaesthesia was a rather confusing affair. Once again I had an oxygen line up my nose but this time I also had a drip and there was also something odd going on with my feet. Every minute or so, my feet would lift up and then descend. What the hell was going on down there? I could hear a compressor somewhere so I assumed it was some kind of inflatable cushion but had no idea what it was doing there. I really wanted to get the line out of my nose and eat - but was told that I had to get my oxygen saturation up before they would remove it. Cue deep breathing exercises on my part - I wasn't going to put up with not eating for long. The next time I was tested, my saturation was fine and thankfully I could get rid of the oxygen line and eat something. It tasted delicious, despite it being one of those curiously hard pre-formed omelettes that the NHS seem to specialise in. Perhaps it was the period of starvation beforehand that made it taste so good... I later found out that the cushion was in fact inflatable gaiters which had been wrapped around my calves to decrease the deep-vein thrombosis risk - something which I have never seen before.
My recovery in hospital was pretty uneventful. In the end, I didn't need morphine for pain which was somewhat of a relief. Paracetamol seemed to be enough. RDE Exeter is a pretty good, modern hospital. I had taken in my iPad with a number of downloaded movies and books, so had something to do. In fact, the iPad often got more attention than I did during the doctors' rounds... Despite this - time did drag on and I wasn't sleeping too well - mainly because I was frightened to move too much because of my right side and the drain. My skin also suffered badly - I seemed to be having some sort of reaction on my arms and neck to the bedding. As there was plastic under the sheets and the rooms were really warm, I also got really sweaty which made it more difficult to get comfortable. Eventually, I was given something to help me sleep and that helped a bit. Washing was also a bit of a challenge. I couldn't use my left hand because of the cannulae etc and my right arm had limited movement and the drain bottle to look after. Hmm. Eventually one nurse took pity on me and helped out as best she could, but the best time was when my wife took charge and I got a proper hair wash and hand-shower with the added bonus of fresh clothes (an old T-shirt cut up the side to cater for the drain) rather than the hospital gowns. I felt so much better - almost human - that day.
I guess its the same in every hospital, but the quality of the staff does vary enormously. Some nurses really work hard and clearly empathise with the patients in their care - others just seem to go through the motions. I found that the trick was to go out of my way to be nice and make friends with the good ones - and that seemed to work. My wife was also superb and I looked forward to her visits every day. She brought ice- cold water and cool-bags full of great food (chicken and decent salads) and made my surroundings more comfortable than any nurse seemed to be capable of doing. On one memorable occasion she took the curtains down and re-hung them because they "didn't look right".
Eventually I was allowed home and the drain was removed from my side - what bliss to be rid of that bottle and to be able to wear normal clothes! However that was to be the start of a long draining process. I had been warned that I would have to have repeated follow-up visits to remove the seroma liquid from my side. Every few days after leaving hospital, it would feel like I had tucked a wallet under my arm and back I went to Exeter to be drained. The first couple of times I was amazed to learn that I had about 150ml of fluid in there! I was also told by the cancer nurse before I was discharged what would happen next. I would receive the results of the lymph node analysis after a couple of weeks and depending on the scoring - i.e. whether there were further malignant deposits in other lymph nodes and if so how many - that would determine what would happen next in terms of my further treatment, including radiotherapy etc. The scoring wasn't fully explained to me - but I could only sit and wait again for the results to come back. My life seemed to be on hold again.
I could however concentrate on getting as healthy as possible at home with that which was under my control. Having previously been a bit of an espresso addict - I cut my intake down to one a day and drank green tea instead. I also took big doses of Omega3 and coconut oil which cleared up any skin problems that I had. I also limited myself to wine (no beer!) on one night a week, and then only 1-2 glasses. I also changed my diet to eat more healthily and it has already made a large difference. I feel pretty damn good as a result - although that's only a small part of the story.
Just over two weeks ago - I received a mobile phone call from my consultant. He asked how my side was and then said he had good news. That got my immediate and undivided attention - time stopped. Without asking him what the news was - I just said "Could I confirm what you just said - that its good news?". I could almost hear him smiling when he confirmed that it was. The lymph node analysis results were in, and they showed no evidence of malignancy. Nil score. Zero. It was like the sun had come out and someone had lifted the world from my shoulders. This meant that I would not have to have radiotherapy or other treatment. I thanked him for calling but my mind was already racing ahead - trying to assimilate what this meant in terms of my recovery and how I would tell others. I remember walking down our stairs to the garage to tell my wife and in-laws - trying not to get tearful, but failing. I found that talking to people about it made me incredibly emotional. It was easier to send e-mails and texts than it was to speak. In particular, I remember my father ringing me when he heard the news. He was overjoyed and clearly expected me to be the same but I pretty much fell apart on the telephone and had to ring off. I couldn't keep it in any longer - it was the only time I have sobbed uncontrollably. It must have been a mixture of the emotion of the last few months coming out and a sheer overwhelming tidal wave of relief. Little things continue to render me tearful - but not with sadness - certain music, thoughts about my family, the kindness of friends and people who have got closer as a result of this experience.
After the euphoria of the news died down a little, I started having sobering thoughts about recurrence. I was not out of the woods yet - I have to see my consultant every three months for three years and then six-monthly for two years after that before any official "all-clear" is given. My facebook post after receiving my lymph node results said it all: "Keep calm and carry on". Very soon afterwards, a card with that very message arrived from good friends who had been through the cancer experience themselves and had a deeper understanding than most. I have framed their card so it is a reminder every day.
Since that time, the physical aspects of my recovery have been less of an issue. My back has healed nicely (albeit that it looks like I have been bitten by a large shark) and my right arm/shoulder, whilst stiff and occasionally sore, is less of a problem. I am driving again and have started using my arm and shoulder more - stretching it out both consciously and un-consciously. I have started physical exercise again this week - gentle sessions on the turbo trainer in my garage gym whilst carefully monitoring my heart rate. My planned cycling workouts wouldn't trouble an arthritic octogenarian at the moment, but I am taking it easy with small, steady progressions over time. I can't do weights yet - I am leaving that until the New Year. It feels good to put a programme together that I know I can do and will get me fit again. At the very least - it makes me look forward, not back. I am also going back to work next week which I am also looking forward to.
The emotional side is interesting. I have had some major fluctuations in mood. One moment I can be full of energy and optimism, the next tearful or angry (or both simultaneously). I seem to be able to rationalise it though, and its almost like I can observe it dispassionately - which is a little weird. I know that its going to take time to come to terms with what has happened, but I have definitely started in a good way and that helps.
More soon.
S
Maybe being out of control of your life is the most frightening thing of all, and now you`ve been at that point and know you can deal with it. Well done Steve, so so proud of you. GAL
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