Once again, it’s been a while since I added to the blog. Having just re-read my latest contribution, I think that the delay has ben quite ominous ☹ However, things are so much better😊.
With a good set of test results in hand, I restarted the chemotherapy. As expected, I was very tired for the first two weeks and slowly recovered my energy during the following two weeks. Once again, my lab results were satisfactory, so I started the fourth cycle of chemotherapy, and once again the energy drained away. I am now in the recovery stage and feeling quite good. The loss of energy is a common effect of the therapy, so there is not a lot to do about it. Fortunately, I have not been affected by nausea, vomiting etc. One fairly uncommon side effect is a general loss of hair. While my head is shaved for the electro-treatment, I have no other signs of hair loss.
The results from the MR-scan were very positive. There are no signs of tumour activity in or around the operation site. Similarly, there are no signs of tumour activity anywhere else within my brain. Just for interest, I have included two images from the MR-scan. The left-hand image was recorded in September and shows the tumour as a fuzzy white disc in the bottom left section of the picture. The same area in the right-hand image shows that the hole left after the operation is filled with cerebral fluid. No fuzzy white discs can be seen, so for the time being things are looking good.
I have another two rounds of chemotherapy in the current treatment strategy. These will be completed just in time for the Summer holidays! After completion of the chemotherapy, I will continue with the electromagnetic field therapy (Optune) for as long as possible, hopefully for another 18 months. While it is cumbersome to have a set of electrodes stuck to my head, and also a burden for Bitte who has to replace them every two or three days, the results will make it worth-while. Various activities are possible even with the Optune electrodes in place.
Three weeks ago should have seen the start of the third cycle of chemotherapy. However, tests showed that my neutrophil granulocyte (a type of white blood cell involved in the immune system) level was so low that my oncologist was not prepared to risk me getting ill with an infection. I have, therefore, been on a break from chemo until my immune system has recovered. This is both good and bad news. I am assured that there will not be any negative effect on my treatment, although I do not feel totally convinced. On the other hand, during the break in treatment I have had a lot more energy for daily activities – the tiredness due to the electromagnetic treatment is still there though.
I had my blood cell counts measured again today, with satisfactory results and have now been given the green light to get back on track with the chemo. I also went for a(n) MRI scan, which will show what is happening inside my head. The rumours of there being a complete vacuum are slightly exaggerated. My hope is that there will be no signs of adverse changes, and that I can start to get my life back. Fingers crossed that I should get some good news later this week.
In the mean time we are staying safe and taking all necessary Covid precautions.
My cousin Susan lost her beloved husband, Tom, a few months ago after a long and valiant fight against several illnesses. I had the pleasure of meeting Tom and Susan when they lived in London for a while in about 1980 and sometime later when they were stationed in Nuremburg. Tom was a great guy and is missed sorely.
Susan sent a message informing me that Tom’s cousin is apparently married to Olympic figure skating champion Scott Hamilton. This was a very nice piece of information which brought back a number of memories to me. First of all, I remember the figure skating in the mid-1970s when John Curry became world and Olympic champion. He introduced the grace and beauty of ballet to figure skating and walked away with all the major titles in the 1975-76 season. When he retired his place was taken by Scott Hamilton who changed the scene completely by introducing strength and athleticism including his famous backward somersault, which was banned for a while, as it was considered to be too dangerous. Both John Curry and Scott Hamilton delighted their audiences over the years and now by accidental coincidence, I am part of that fame 😊
My own skating career began at the Deeside leisure centre in 1976. I went there with my cousin Susan together with my brother David. We each rented a pair of skates, and took to the ice. We had 20 minutes to get around the track as many times as we could. In my case the furthest I got from the side was maybe three metres I spent most of the time falling over I think in the 20 minutes I covered one lap of the track after we were done there was a speed skating for those that could skate and then we went back and did another 20 minutes equally as unimpressive.
Some years later after moving to Sweden, some friends from my corridor took me out to skating on a nearby Lake using long distance skates. These were a bit longer than the standard skates and were strapped onto my gymnastic shoes. The technique was to sort of move from side-to-side leaning forwards and hopefully that would cause some kind of propulsion to get around the Lake. Maybe I managed one or two kilometres during that day, mostly being pushed along by the others, and I thought it was a lot of fun but I didn’t go back for some time.
A couple of years later one of my PhD colleagues Anders invited me to his house over Christmas and said that we would go playing hockey so I had to buy a pair of hockey skates. When the day came to play, we went to this hockey rink. I put on the skates and tried to skate. As expected, I was not very good and I found that I could turn to the right but I couldn’t turn to the left. I complained that there was something wrong with the skates but the others just laughed at me. As it turned out, one of Anders friends, Ronnie, tested my skates and discovered that in fact the blades were incorrectly positioned and that he could only turn to the right as well but that’s another Story. Since then, I have tried long distance skating or the number of occasions with some degree of success managing some trips of almost up to 10 kilometres.
It turned out some years later that I ended up in Gothenburg, in the chemistry laboratory at the University. Some of the people there played in the local amateur Hockey League and asked if I would like to join. I informed him that I was actually unable to skate but said that I was game anyway. They told me that I could be the goalkeeper, as there were no requirements to be able to skate for that position. On the day of the first match, we went down to the hockey stadium got changed and then got out onto the ice. The first comment was by somebody who noticed that “Chris actually cannot skate” they hadn’t counted on that, as when a Swede says he cannot skate it usually means that he is fairly competent, whereas when somebody from the UK says he cannot skate it means he cannot skate. The game started and after a few minutes we were four-nil down. But then I got some instructions from one of my team-mates who advised me to forget about skating just get in the way of the ball, so that was my philosophy for the rest of the game. Every time the ball came close, I just jumped in its general direction, apparently to good effect. The game ended in a 4-4 draw and we were quite happy with that. As the season progressed, I became quite competent as a goalkeeper not letting very many goals in and we ended up in second place in the League. I even have a plaque to prove it. For some reason I didn’t get invited back for the following season.
Long-distance skating is much more relaxing than skating on a hockey rink on one occasion I went out and it was very cold in the region of 20 degrees below zero. I was wearing a woollen pullover that my mother had knitted for me and as it was quite an exertion to skate, I was perspiring quite a bit, and of course at some stage I had to fall over. When this happened, the moisture that had condensed on the outside of my pullover froze to the ice resulting in me becoming frozen to the surface. My friends had to scrape me up from the ice leaving an outline of my pullover on the surface. (Unfortunately, there is no graphic evidence for this particular episode).
Another skating experience was when I went out with my brother-in-law, Lars, for midnight skating on a small Lake. We had done some reconnaissance during the afternoon and found this the ice to be in perfect condition so we went out at midnight by the light of a full moon. We put a Lantern at one end of the Lake so that we could see where we had to get back to and then off we went and skated around the Lake it was a fantastic feeling. If Bitte had been with me it would have been romantic but as it was Lars, we just had a Cup of coffee a hot dog and went back home again. My skating career came to an end at about this stage as I discovered skiing instead and found that to be much more interesting and a lot easier to cope with especially as the snow tends to be a lot less hard compared to the ice.
The second, of six, monthly cytostatic treatments is now in progress. The dose has been increased by 50 % to three times the dose I had during the Autumn. I can assure you all that these are powerful things and, as a consequence, I have been completely flattened for the last week or so. Today, however, is different. I have a bit more energy and have therefore managed to do some things that have been neglected recently. I unpacked my euphonium and played for about half an hour. It didn’t sound great but It felt fantastic.
The treatment means that I have good days and not so good days. I hope to have many more of the good days like today.
In just over a week, the “Vasaloppet” race will take place from Sälen to Mora. The race is a test of endurance being 90 km on cross country skis. Normally there are about 14 000 participants in the race with a further 15 000 or so taking part in open events on the Sunday and Monday prior to the main event. This year the race is reserved for elite athletes with others able to complete the course at their leisure (sic) at any time during February.
My current health issues mean that I am now in a permanent endurance event for which I will have to draw on all of my reserves of strength and energy. It reminds me in many ways of the first time I took part in the “Vasaloppet” open event:
It all began at a party in 2001. Some of my colleagues from Agrivir were discussing their plans and training schedules for the upcoming ski-event. Diplomatic as always, and not in any way affected by the drinks served at the dinner, I expressed a view that anyone could ski 90 km. When challenged, I said of course that “anyone” included even me. I was greeted on the following Monday morning by one of my colleagues with “You owe me 1200 kr”. I was enrolled for the race and there was no way of backing out of it. I owned a pair of skis and had attempted a few times to use them, but this generally ended with a bruised body and great deal of embarrassment. Now, however, this was serious. I had to learn to ski and to build up the stamina to keep going for as long as it would take. Research suggested that an average skier should take about 9 hours, so a beginner might take 10 or more.
When Winter arrived, I tested the local ski-track, which is about 2,5 km in length. One lap took 45 minutes which projected to a time of 27 hours for the full race. I was in need of some serious training. A friend advised me to buy a proper set of skis to replace the toy skis that I had, while another advised me to practice two things: changing from one track to the next (in the unlikely event that I should want to overtake somebody), and how to apply the brakes. New skis were purchased together with ski-poles and boots. Back at the local ski track, I got my lap-times down to under 20 minutes, which gave some hope, but in all, I only managed about 40 km of practice. When it came to the weekend for the race, I had given up on actually completing the race and suggested to friends and colleagues that I would come to the start, just for the experience, and that I would ski to the first checkpoint and then take the bus back to the finish line. I promised to drive the car back to Uppsala.
On the morning of the race, we were up at 3 am for breakfast then drove for two hours to the start. It was very cold, almost 20 degrees below zero. I got in line at the back of the field and waited for the start. It took about 10 minutes just to reach the starting line, but then we were on our way. I think that I managed fall over before even crossing the starting line! The race starts with a climb of 3 km at about 10 %. After that the course is fairly level with a few gentle downhill sections. The climbing was really tough, so getting to level ground was a relief. The downhill bits meant relax, rest and, in my case, fall over. I became quite good at falling over and quickly getting out of the way of the other skiers. However, one particular incident comes to mind: I had managed to stay upright on a longer downhill stretch, but in the end I lost control and crashed, much to the amusement of the spectators, who seem to gather at the sites where most crashes take place. I looked back to see which way I should move to get out of the way of oncoming skiers. At this stage there were not as many on the course, as those who could actually ski were way ahead of us. I could see that there was one person coming down the slope and that he was waving his arms for me to move, but I could not see which track he was in as there was a small mound in the way. As he got closer I could here him shout, (in English, how did he know?) “I cannot stop, I’m a beginner, please move”. As he came over the mound, I saw which track he was in and quickly got out of the way. He passed by at high speed shouting his thanks for saving him from broken legs or worse. I continued on my way and passed the poor guy who had crashed a little bit further along the way.
During the race, each checkpoint has to be passed by a certain time. At the designated time, the rope is raised across the tracks and all latecomers are channelled to busses for transport to Mora. Conversations along the way begin to centre around the rope as each checkpoint approaches. At the first checkpoint, where my plan was to pack up and take the bus, we were given the news that we had over an hour before the first bus was due to leave. I decided that I would rather keep warm by skiing than wait in the cold, so I continued. The situation was the same at the next checkpoint. At the halfway point of the race, which represents further than I had skied in total before the race, I was still 30 minutes before the rope. I decided to keep on going just to see how far I could ski before the dreaded rope catches up. The closest it got was about 20 minutes.
For the last 10 km or so the course was lit up with flaming torches, which created a fantastic atmosphere amongst the skiers left on the course and the spectators cheering them on. A crash at this stage could result in serious burns, but by this stage, I had learnt a bit more about how to stay upright. As I skied down the final straight, my friends were waiting, shouting “Heja Chris”. I have to admit that crossing the line, after 12 hours, 17 minutes and 15 seconds, was quite emotional, I had not planned to complete the race and was really surprised that I had the strength and resilience to do it.
I suppose that there are lessons to be learnt: you can achieve a lot if you put your mind to it, don’t underestimate your ability, and much more.
I have now completed the 90 km a total of 11 times, and hope to do so a few more times.
Seeing the name TT Fields brings to mind a number of literary greats, such as TS Eliot, JC Oates etcetera. However, TTfields stands for Tumour Treatment Fields, which is the name given to the treatment strategy that I am currently subjected to.
The method disturbs cell division in cancer cells by preventing the organisation of DNA with oscillating electromagnetic fields. [A more detailed explanation is available, but I think that it would serve no purpose at the moment.] According to a number of reports and the conclusions of an FDA-roundtable the method improves survivability for patients in my predicament. As mentioned in earlier posts, I already have a number of factors which may give me a more favourable outcome. Hopefully this treatment will improve my prospects even more.
For the treatment, I have to wear a set of electrodes over my head. The electrodes are connected to a battery which generates the oscillating fields. The system has to be in use as much as possible for as long as possible – we are looking at a treatment period of about two years. During this time the electrodes have to be changed every two to three days, full head shaving included.
With all this high-tech equipment, I think that I will be easily traced should I go missing. Unfortunately, the system does not offer direct connection to 5G networks.
At the same time as this treatment is going on, I am on a new course of cytostatics. This time, it is on a four-week cycle, with pills for five days (double dose compared with previously), followed by a break for the rest of the period. If all goes according to plan, I will repeat this cycle at least six times, after which it will be a case of wait and see how things develop.
I wrote this post a few weeks ago, but forgot to press the publish butto. Sorry.
More to come soon.
Christmas came and went, but Autumn remained with damp weather and darkness. At the same time my radiation therapy, with daily visits to the hospital, was completed. I was looking forwards to six weeks of rest and recovery, but instead I got very tired and had a few episodes of nausea, which resulted in spending an evening/night at the emergency department. Things have, fortunately, gone back to normal again, with me being a lot more energised. The latest MR scan showed no traces of tumour cells, which is very positive.
We now have full-scale Winter in Uppsala, with a generous sprinkling of snow and temperatures in-excess of 10 degrees (C) below freezing. The other day, we tried our cross-country skis out on the local football pitch. That went quite well so we have been for a couple of longer sessions on one of the local golf courses. Our plan is to take part in a ski-event in late February with 30 km as our goal.
As it was so cold we decided that a barbeque would be a good dinner choice. It was very successful.
Chris avslutade enligt plan behandlingen med strålning och cytostatika den 8/1 efter sammanlagt 6 veckors behandling. Han har nu vilopaus i en månad innan nästa fas i behandlingen. Vilopausen har visat sig mycket behövlig då han har blivit mycket trött och utmattad. Några dagar med stor trötthet, illamående, matthet och lite feber ledde till extrakontroller på sjukhuset. Tack och lov så är alla labprover bra (och ingen covid-19) och datortomografi visade inget nytt. För säkerhets skull har han fått gjort ny MR idag och svar på den kommer inom en vecka.
Han mår lite bättre men är fortsatt trött vilket är förväntat. Han orkar dock titta lite på tv som fotbollsmatcher och presidentinstallationer. Han hälsar till alla!
In Sweden, during the period between Christmas and new year, one can often hear the phrase “God fortsättning” as a greeting between people as they meet. In normal years you would hear this all over the place, 2020 is, as we are all too well aware, somewhat different. Google translate, which lacks any trace of human empathy, and is, therefore, an acceptable AI application (unless you are a veterinarian, in which case AI is something else), offers “Good continuation” as a translation of this greeting. There is no corresponding phrase in use in English. Briefly, the phrase expresses heartfelt wishes for good health and prosperity for the future.
Whilst on the subject of health and prosperity, I would like to bring to your attention our appeal for support for Hjärnfonden, the brain foundation.
We set a target of 10 000 kr and are very close to reaching it. If we exceed the target, we will be extremely happy. We also set a target date, January 6, 2021. This date is significant for three reasons; It is our grandson’s birthday, it was my father’s birthday and it is the date that I will reach the end of the first stage of my treatment.
Hjärnfonden supports research about the workings of the brain and how various illnesses arise and how they may be treated. This can include everything from strokes and tumours to mental illness to development issues. The work they do is worthy of our support.
On a personal note. As I am reaching the end of the first phase of my treatment, I am in good shape, both physically and mentally. I do tire rather easily, which is a consequence of the radiation therapy. I am looking forward to the four weeks of recovery before the second phase begins.
I, together with Bitte and the rest of the family wish you all “God fortsättning and a happy new year!”