Note: This short story is to be read after my previous article, Where is My Tattoo?.
The surgeon who took my tattoo away was delighted with himself when I met him two weeks after the surgery. He had a broad smile and told me convincingly that my cancer was gone. Big smile. Nice to hear about 6 weeks after I was first told, “you have a cancer”. But… this is England and there always is a but.
His concern was that the area of the colon where my ex-cancer was located is well irrigated by blood, and although there was no adherence to any other organ he recommended that I undergo a program of chemotherapy to “cleanse” my blood of potential floating cancer cells. My autopilot reaction was “sure – fine – let’s play it safe.” Mentally, the image I got was that of Woody Allen as a spermatozoid in Everything You Always Wanted to Know About Sex. In other words, a microscopic thing floating aimlessly in a sea of liquid. But unlike the spermatozoid metaphor in my case those floating things could kill me.
Jean-Louis Bravard
Not leaving the game at half time
I was totally relaxed because the colon cancer surgery had been so easy to live through and by the time of the meeting I was emotionally focused on beating cancer, no matter what it took. I was not prepared to even consider leaving the game at what I assumed was half time. Well at least I thought that was half time!
The next stop was with the oncologist: program of twelve sessions over 24 weeks. Pretty standard stuff (I was told) but I had to choose between having the chemicals injected orally or through a vein and in the latter case either via permanent catheter port (port-a-cath), or case by case in the healthiest and most accessible vein at the time.
Gripperneedle in a Port-a-Cath. Image by PanaromicTiger via Wikipedia.
My first reaction was to go for pills as this sounded easier, would permit travel, and be less intrusive. My mind was changed after speaking with my daughter (“the doctor”) and I went for the port-a-cath. Six months later, I do not regret that choice at all. My daughter’s arguments were that if things go wrong I would be moved to an intravenous delivery anyway and that a port-a-cath avoided damage to my stomach and was easier on the veins in the arm. ^
Yes I took a selfie
The decision to go with a port-a-cath meant a “minor” surgery with local anaesthesia to insert a “hub” inside my body just above my right pectoral. The hub is the size of a 2-pound coin and has about 1cm in height. Piece of cake! Well, not totally. I was fully conscious and could indeed participate in the process. I even took a selfie in the operating room!
Having the surgeon work via a huge X-Ray system with an iMac size screen (and play with my muscles and veins as if I were made of silly putty) was strange and it took me a few days to get used to having that device inside my body. No pain, but I can feel it when lying down and it sits just where a backpack straps goes. Oops… Forgot about that!
Six months later and still no regrets. What a good call accepting the port has been! Regular blood tests and lengthy chemotherapy sessions (about 50 hours every other week) no longer mean that my arms are ploughed for blood. I do not look like a drug addict and even repeated blood tests have been mostly routine. ^
Just like a Starbucks without elevator music (and coffee)
I was really relaxed starting the first session. Blood test on Monday morning and first blood out through the port. Pre-session meeting on Tuesday. Blood tests given the all-clear and I am led to the chemotherapy rooms.
The area is quiet and well lit. About 20 patients at a time. All sitting or lying down and about two-thirds of patient are with a companion. No sense of pain whatsoever and about a quarter of the patients had an iPad for company. In other words, Starbucks without elevator music… and no coffee. But free juice, water or sandwiches and an older lady offering tea.
All included and all nurses smiling. As with the popular “Trip Advisor” facility, we should have a “Clinic Advisor” to rate such superior care.
Image via Kaboompics.
The aftermath of the first session was not so good. I had a massive case of diarrhoea and lost a lot of weight in a few days. My family got really concerned but, over the ten days between the end of that first session and the beginning of the second, I bounced back enough to have good blood tests, rediscover my appetite and ready myself for the second session. Prior to the next session, I was better guided (or better understood the suggestions I had received) and told to take anti-diarrhoea medication at the first sign of a problem.
That second session went like a song and the same was true for the next five sessions. From session seven, my blood started showing signs of strain and I often had to return for last-minute blood checks on the day of the chemotherapy, which created some suspense. Still, I did what I could to stay on schedule, which I managed until Session 10, when I needed an extra week of rest despite several injections of a bone marrow booster in order (I was told) to increase the level of white cells in my blood. During those “booster” days I was like a 16-year-old boy growing too fast. I was dead tired and was only thought is sleep… sleep. ^
A few further thoughts (in alphabetical order)
Blood tests – lots of them
Boy! I have been giving a lot of blood. As my blood has only been used for tests, it is a real shame it probably does not help anybody, even though my blood has been very deficient of late. The interesting bit is how much I have learnt in the process.
I did not really know more than basics about red and white cells and platelets, but after so many poison attacks on my blood cells, I am in awe of my bone marrow; I now realise that that soft matter is responsible for producing all my blood cells and platelets. Amazing! I also understand the logic of killing potentially cancer carrying cells and replacing them with brand new, hopefully, untainted ones. I will have a drink to my bone marrow when I am done with the last session! ^
Farting – no lack thereof!
Not only have I been farting all the time during the chemotherapy, but the mix between the chemicals and dead cells produces a toxic mixture which is extremely hard to get rid of but extremely easy to recognise – at least by the polluter! One of the funniest situations occurs when in a constrained environment.
Two situations: the first was on a full flight from Nice to London. It was between two sessions and my farting was, shall we say, subdued but still a risk. I sat next to a window (= less targets) and informed my older English neighbour that I was undergoing chemo and may pass some wind. He acknowledged and thanked me for letting him know. I did my best to hold my WW1 gases but failed right before landing. He did not thank me a second time!
The second case was as I was driving after a board meeting near Brighton. A 90-minute drive and my partner was properly warned but I had to regularly sound the (“Fart”) alarm so we could open all windows. After about 6 alerts he did not even need a warning, as he understood that there was no time to spare and he would open his window within milliseconds when I opened mine. I will use this section to thank my family (especially my wife) for the patience by which they lived in constant fear of a gas attack. ^
Focus – tough
This may be a very personal account but I found it very tough to concentrate my mind during chemotherapy. To some extent, there is no question that being tired all day (despite long naps and twelve hour nights) does not exactly help concentrating when awake. But, the journey was tough and I had to use a lot of energy to rally my thoughts and work. I am happy I did though, because work kept me going, kept me in tune with society and forced me to forget my own physical (and mental) issues. However, it was tougher than I thought and the encouragement from many was truly helpful.
Friends – interesting experience
After sending my “Where is My Tattoo?” short story, my situation was known to all around me. My immediate work partners would regularly ask me to relax and prioritize my health (see Working section) but what really surprised me was the fact that very few friends actually made the distance with me. Reading this, they will know who they are, but the regular calls, SMS, emails and other WhatsApp have been wonderful.
I will never know whether the larger number of friends who remained silent did so for caring reasons or lack thereof but while I am not sorry at all I got cancer, I am sorry to feel that so many could not have taken the time to say hello or visit (which my wife was rightfully reluctant to allow). Asking for help is not me but now 9 months into a cancer journey, I can count the true friends.
On a related note, many old acquaintances and ex-colleagues heard about my situation and came clean on their own bouts with cancer. Too many (in my opinion) had not shared their journeys through that disease (their own or spouse’s or children). Now they felt they had permission and we could bond, share our fears and hopes. I feel a lot closer to these people. Furthermore, cancer is still out there and a few recent cases have led several to call or meet as they enter their own journey. This justifies having written the “Tattoo” piece and this piece. Cancer still is a disease to which stigma is attached and today, despite so much information available (McMillan and more), I feel that nothing can replace a been there, done that chat between two people. ^
GUT the book – brilliant
Maryanne, a friend of my younger daughter, gave me the book Gut, by Giulia Enders. Great, easy reading which taught me a lot about the whole system. It did not change any of my care or my dietary choices but reading the book I learnt an awful lot about myself and how my organs work. Last, but not least, I now understand why I farted so much during the chemotherapy!
Here is an interview with Giulia Enders: Gut Reaction (21 minutes) ^
Memory – lack thereof
I could joke and say that I do not remember what I wanted to say about memory but there is no doubt that my memory has been affected by the chemotherapy. I find it harder to find words when I communicate and too often I just do not remember what was said. Hopefully things will get better but I did not expect to have that impairment.
My solution has been to write down everything, from shopping to all activities I wanted or needed to manage. Putting all that in my iPhone helped tremendously. ^
NHS – just fabulous
A class act, again and again.
When cancer struck I had been living in the UK for almost 14 years and had never been sick. Throughout the period I had heard a lot of complaints about the NHS, a lot of haggling about the NHS during elections and I also heard many unfavourable comparisons with the French or US health systems. During the London Olympics I was surprised at the amount of focus the NHS got during the opening ceremony. None of that really affected me…until I got sick!
I know that there are differences by city and by hospital but the number one observation is that so many people just do not know what they are talking about when they talk about the NHS!
On one side statistics are hard to compare but I can also say that (1) the NHS saved my life (2) my cost was zero, and (3) the care I received was world class. No system is perfect and we will never have the resources to meet all the needs, but I am happy to be counted on to privately and publicly defend such a great institution and the people behind it. ^
I have been so lucky. In the “Tattoo” piece, I wrote about the fabulous multi-cultural nurses who took care of me at St Mary’s Hospital during my 4-day stay after surgery, but chemotherapy is a long haul journey and I dealt with many more nurses at Charing Cross Hospital. Without exception, they were all wonderful, males and females and all worked as a seamless team despite staff shortages, tube strikes and their own pressures.
Throughout the process my guardian angel was Teresa who gave me the one-to-one before each session. Very professional but with a profoundly human and caring side. no matter the time of day and when she was away Natalie and Georgiana showed the same human care. Awesome!
Session 10 was a good test as my session fell squarely during a tube strike and many nurses were late or incapable of crossing London. My port-a-cath was not operating well since the Monday. With nurses we tried everything possible movement to solve the problem. There was no way blood would come out of the catheter irrespective of the size of the syringe used. Rosie coached me to make many arm and shoulders movement to play with the port-a-cath but to no avail. As a last resort, the two of us were standing flapping our arms in unison and doing a chicken dance in the midst of all in the the chemotherapy room. All patients laughed as this lasted several minutes.
Sadly, we had to resort to a CT-Scan a few days later, which showed that the line was stuck against the wall just above my heart. Any suction pulled the catheter line against the vein wall and blocked liquids but there was no problem in “infusing” poison into my blood stream. That day also was a tube strike day and when back to the chemotherapy area there was a bit of pressure as all nurses present were under massive pressure with patients for the whole day… but Teresa took upon herself to take care of me rather than reschedule the appointment. All with smiles. Many consumer firms could learn a lot from the NHS! ^
Predictability – lack thereof
This issue, lack of predictability, is probably of function of each person’s life style.
In my case I adapt relatively easily to change but I also plan trips and activities weeks or months in advance. Some board meetings are planned over one year in advance. The chemotherapy vagaries made all this extremely difficult until I just gave up and decided not to plan anything in advance and live almost day by day or at least one chemotherapy session at a time. This is what my wife suggested mid way, I was slow to accept the complete lack of planning but ended up facing reality. The last two months started with a totally clear diary and I must admit that this reduced pressure on both of us.
Taking public transport
I was told to avoid any risk of disease by way of food or social interaction but I needed to work and kept using public transport. I was careful though and avoided the peak times and favoured buses over the tube (when that was possible). There were a few exceptions but I paid special attention to regularly cleaning my hands with antiseptic soaps and de-tubing became a second nature. ^
Tiredness – A full time job!
Despite long naps (two hours plus) and long nights (up to twelve hours) I became increasingly permanently tired. I had been warned but being of an active temperament it was hard to cope with the change and the fact that this was going to last the whole protocol.
Interestingly, early in the treatment I was given steroids and hat medication had an incredible effect. During a couple of days, I was invincible, with a sharp mind (and tongue!) and lots and lots of energy. I almost felt I could play rugby or American football but when the steroids stopped I became a complete silly lump with zero energy and zero desire to get up or think. Anybody thinking that steroids are not a drug is nuts! ^
The washing machine
One of my very good friends has been going through both chemotherapy and radiotherapy for a higher risk cancer than my ex-cancer and he had this metaphor between chemotherapy and a washing machine.
I must say that it is appropriate because while I felt really taken care of, at the same time I had as much control over my life as a pair of dirty sneakers being washed and tumbled back and forth for days at a time.
I felt safe but did not like the lack of control and the long journey over a dozen sessions. Still I feel so lucky I only had 12 sessions when many have more and, worse, many do not even have the luxury of chemotherapy due to the type or advancement of the cancer. This whole thing made more English… no complaint. Just sit straight and suck it up! ^
Working
Not everyone is wired the same way and I must say that in the course of seven months and observing my fellow cancer patients: we are all different! So I should only say that in my case I kept on working and while this was harder than I will ever admit the activity help me stay sane. The projects I had started all continued and seem to be successful, each in their own way.
Looking back, I probably should have slowed down a bit earlier on but I have no regrets. As mentioned above I was transparent and I must say that I am incredibly thankful to all colleagues, clients and those who tolerated my moments of extreme tiredness and recurrent lack of attention. You know who you are and made my days! ^
You look great!
My appearance never was a point of focus and I was warned that my hair may fall or become thinner; my skin may become drier; my finger nails may fall etc.… I suffered none of the above, partially due to the fact that I am nearly bald, but I did suffer from a Raynaud type syndrome with a feeling of needles. That was worse during the chemotherapy sessions and faded during the days of recovery. However, the phenomenon is additive and I still have a feeling of needles in my finger tips and my left sole. I am told this slowly dissipates over time but while invisible to third parties. Hard to hear I look great when I could not handle a cold bottle, a cold metal handle of worse drink Champagne! ^
My journey with cancer
I have been taught that a conclusion is necessary but I do not think it is appropriate here. My journey with cancer is not finished even though I am officially cured. Living 9 months with such a companion and with such fantastic support around me has had a significant impact on me and some around me. I think we are all stronger and better at ranking priorities. Many lessons learnt and hopefully that phase is not over. ^
Hopefully this writing will help others through their own journey or the journey of individuals close to them. In any case I have learnt that all cancers are different and above all that we are all different in the face of cancer, so it is with tremendous modesty that I want to underline that the story above is just one data point in an ocean of past, current and future cases.
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Jean-Louis approaches everything as a winner. His positive attitude to everything in life is contagious. It’s great knowing him and being able to call him a friend.
Couldn’t agree with you more – a true winner. Jean-Louis’s honesty (and humour) in the face of uncertainly makes this a beautiful story to read and share. I think we’ve all learnt something from the way he faces adversity. It’s also great to see the NHS and its professionalism is valued and praised.
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Jean-Louis approaches everything as a winner. His positive attitude to everything in life is contagious. It’s great knowing him and being able to call him a friend.
Couldn’t agree with you more – a true winner. Jean-Louis’s honesty (and humour) in the face of uncertainly makes this a beautiful story to read and share. I think we’ve all learnt something from the way he faces adversity. It’s also great to see the NHS and its professionalism is valued and praised.