Today is the first day of treatment to see off what might remain of the tumour that had so rudely intruded into the back of my head.
The first stage was radiation therapy with high energy X-rays (6 MeV). Yes, I had lots of questions about the technique being used, the energy and wavelength of the radiation, precision etc.
Linac machine at 6MeV ready to treat me
Mask on, lie still, relax and enjoy the ride. There was a lot of machinery moving about with whirring noises. As requested, I was very still. It felt like it was over in no time.
Mask on and ready to go.
The next step was at the oncology ward, where I was presented with a mountain of tablets, both for my treatment and to counter possible side-effects (to be addressed in an upcoming report).
Radiation treatment
The staff are so kind and considerate. If it wasn’t for COVID-19, I would probably end up as a metoo case for hugging them all.
Having gone through all of the tests, with blood samples, electrocardiography, CT, MRI and PET, and an operation to remove the suspected tumour, there was a long wait. As the wait got longer the more, I suspected that the final diagnosis was not going to be good. It all depended on the outcome from the pathology department. I finally got to meet the team from neurosurgery and oncology to discuss my condition and how it is to be treated.
Walking into the room was a strange experience. Two doctors dressed in standard hospital attire (scrubs!) sat next to each other, while a nurse, also in scrubs sat to their left and slightly further back. I interpreted this as an expression of hierarchy within the health care system. Two chairs were positioned for Bitte and myself, not too close to the doctors and not directly in front of them – these are corona times after all.
After standard introductions and the formalities of asking how one is feeling and my usual bluntness in saying that I feel perfectly healthy although very worried about what I was about to hear, we got down to business. We were told that the tumour, upon examination, was found to be a grade IV glioblastoma. Actually, I knew this as I had read my medical notes the evening before, but hearing this information from the medical expertise present in the room is totally different to reading it on a computer screen. As it all sank in, questions started to form, primarily concerning how much time do I get? and what do they, the medical staff, intend to do about it, my unwanted intruder? The meeting went on for about an hour. We had lots of questions and got some answers and some half answers. In general, it is up to us to draw conclusions from the information available. We have, however, a plan and a schedule to follow. These will keep me busy for the next two years or so.
Radiation from above
My treatment starts on November 24, but there are some preparations which are necessary to guarantee the accuracy of the radiation therapy (Read “The machine that goes ping). Treatment will consist of a combination of radiation therapy (X-rays, produced by a linear accelerator, directed with high precision at the site of the tumour. My warped sense of humour says that the tumour is probably in the freezer of the pathology lab) and cytostatics (temozolomide). This phase of the treatment will last for six weeks with radiation five days a week and cytostatics every day. This phase takes us to Twelfth night! After that I get a break for two weeks before phase 2 begins.
Phase 2 involves temozolomide treatment for five consecutive days followed by 23 days for recovery, repeated a number of times, I believe that they mentioned six times, but it could be more. At the same time as the second treatment phase begins, I will also be fitted out with Optune equipment for electromagnetic irradiation of the residual tumour cells. This is a kind of local 5G transmitter which I will have to wear 18 hours a day, powered by a battery which is carried in a small rucksack. It will be interesting to see how I cope skiing and playing golf with this in place.
Ahead of me are two years of treatment, which will, in all probability, be altered along the way. This treatment will not only affect me, but also those closest: family, friends, and colleagues. (Please note that you may be included in several categories, I am in the happy situation that I consider both family and colleagues as friends.) I am entering this process with a good deal of optimism as there are a number of factors which give me an advantage: The tumour was discovered early and all detectable parts were removed soon after discovery. The tumour was, despite being grade IV, methylated, which can be interpreted as making it more susceptible to the treatment and also slightly less aggressive. I am in fairly good physical shape and should cope well with the treatment.
In conclusion, I will follow the advice of Project Runway presenter, Tim Gunn, and “Make it work”.
I spent a few hours at the hospital last week in preparation for my upcoming radiation therapy. The first task was to make a mask to hold my head firmly in the right place for irradiation. This involved being positioned correctly and having a warm/almost hot sheet of plastic placed over my face and having it formed tightly then fixed to the table. The process was uncomfortable but ok. The mask was cooled down with some damp towels then I was ready for a CT scan.
The PET scanner att Uppsala university hospital
After this process I was transferred to the MR department for a magnetic resonance scan. The mask came with me. The assistant showed me to a small room and requested me to remove all my clothes and put on a hospital shirt. I think that I must have looked a bit surprised as she then said that I could keep my underpants, which was a relief (see earlier post). I was taken to the MR room and had to lie on the examination table where I was reunited with my mask and promptly fastened to the table with my head in exactly the same position as for the CT-scan. The MR did not go ping, but it did make a lot of noise. While inside the MR I had time to think about my own experiences of MR earlier in my career:
NMR in Sweden is “Nordic Motståndsrörelse”, an unpleasant fascist organisation that we will ignore. For the rest of this post NMR or MR refer to the medical or scientific techniques.
My first encounter with NMR was while attending grammar school. My teacher was an expert in the field having attained a PhD using the technique. My class got to visit his lab at Liverpool university. It was all very high tech (think 1977) with computers and lots of flashing lights. We even got to play a computer game.
Some years later I arrived in Uppsala as a post graduate student and started doing work on DNA and RNA synthesis. After completing my first experiment a fellow postgrad, Marek, said something which I understood as “you need an enema”. I explained that my bowel function was perfectly fine but thanked him for his concern. After some discussion we arrived at the conclusion that I did indeed need an NMR in order to confirm the results of my experiment. After this small incident NMR became an integral and greatly appreciated tool in my research career.
A couple of years later I got the opportunity to attend a course on advanced NMR spectroscopy, given by one of the leading experts in the field, in Södertälje, a town about 150 km south of Uppsala. The course was over two days and required staying overnight at the local hotel. I, together with a fellow postgrad, Anders, were given permission to attend the course, but not given the economic resources required. We solved this by commuting for two days on Anders’ Triumph (if I remember correctly) motorbike. This would have been fine except that it absolutely poured down with rain both days, so that while all of the course participants were well dressed, Anders and I were like drowned rats.
A few more years passed and I was responsible for establishing an NMR lab in the basement of Uppsala Biomedical Centre. My main concern was to create a lab that was accessible for many different users while keeping to a very strict budget, a returning theme in the academic world. One of the researchers expected to be a frequent user was Dr L., who is sadly no longer with us. Dr L. had lost his right arm in an accident while he was very young and had adapted to life with only one arm in an admirable way. We used to joke a lot and had literature seminars in the sauna quite frequently. I named him the one-armed bandit, which he appreciated, but many others thought offensive. When the lab was ready to be inaugurated I was a bit worried because the NMR instrument used a very strong magnet to which any magnetic objects would get stuck. This could include various tools, pens, hairclips etc and cause distress to the owner as they were hard to remove. What was worse was that it was not good for the instrument. I, therefore installed an extra hanger by the door. Dr L. noticed this and immediately asked what this was for. I explained that it was for him to hang his prosthetic arm on before entering the room. Dr L. really appreciated my concern for his wellbeing, but many other people thought that I was completely tactless. The next day I noticed a second hanger next to the door. After making some enquiries, Dr L. explained that he had installed the second hanger for our female colleagues to hang their bras as the wire supports were probably magnetic.
It is quite amazing how thoughts can wander and associate during what is normally a stressful experience. I was soon released from my mask and from the medical radiology department. As a reward, I was able to indulge in a cinnamon bun and cup of coffee (you can’t get more Swedish than that!)
After years of dreaming, months of planning and weeks of hard work by our craftsmen, Niklas and Josh, helped by electrician Kalle, it was finally time to inaugurate our jacuzzi.
Bubble in the bath and bubble in the glass (Moët & Chandon) made it double bubble.
Operation day was a bit weird in more ways than one! I have already mentioned about being high in the recovery ward, but another memory puts into question what the hospital staff get up to when patients are under the influence of anaesthetic.
The day started with a very abrupt awakening at 4.45 ish to take a shower using disinfecting soap. After the shower I was dressed in a back-to-front shirt for the operation and a pair of large, but very comfortable, underpants. Then it was back into bed to await various medications and transport to the operating theatre.
After the operation and a while in the recovery ward, drifting in and out of consciousness I was transported back to the ordinary ward. At some stage during this process I came to realise that I was no longer wearing the large, but very comfortable, underpants. This raises the question as to where did they go? Being hospital, one has lots of time to speculate about various events, and to recall similar happenings from the past. One that came to mind was from my growing up in Port Sunlight. There was apparently a series of thefts of underwear from washing lines in the village. This sort of thing happens from time to time and even finds its way int popular culture, such as the song “Arnold Layne”, by Pink Floyd. I have come to the conclusion that the individuals that engage in stealing underwear from washing lines eventually find employment in medical institutions where they can continue their strange hobby while earning a wage.
This could be the subject of a research project if anyone would like to test the hypothesis?
Six weeks after discovering that I had an unwelcome intruder in the back of my head and three weeks after its’ removal I am feeling fine. However, the results on the nature of the tumour have not come back from the pathology lab, so we are still waiting for decisions on the treatment strategy. I expect that it will involve a combination of radiation- and chemotherapy. Not knowing is the worst bit.
To look my best for the next weeks I paid a visit to the barbers; I have been a loyal patron of the same establishment since I moved to Sweden over 38 years ago. Being so well taken care of was really good. We also had a bit of a laugh. The chosen theme was “Screw the tumour”. Enjoy the results!
Styling and photo by Igor Gällström, Domfrisörerna.
We moved into our current home almost 20 years ago. Before signing the purchase agreement, we had the house checked over by a building engineer to make sure that we were getting value for money. The recommendations included improving the drainage around the house, which was considered to be high priority, and re-tiling the roof, which was considered urgent. While we did eventually get round to replacing the drainage and insulation around the cellar, we have happily ignored the recommendations concerning the roof – despite being described as urgent. That was until this Summer.
We felt that the roofing needed to be re-done including replacing the felt and battens and where necessary the underlying structure. Our insurance company had encouraged us to get the roof done by pointing out that they would not cover the cost of any damage caused by leakage. Having made the big decision about the roof, it was a simple step to deciding that the gables also needed replacing, allowing us to change the colour from dark brownish grey to something a bit more pleasant on the eye. From there the next decision was to replace the windows, which were not the most energy efficient and certainly in need of maintenance. In general, we have tried to clean the windows once a year regardless of whether or not it was needed.
Big decisions were made and we were on a roll so we, just for fun, decided to rearrange the porch with a new conservatory and as icing on the cake a built in jacuzzi. There were a few moments of concern during the process of acquiring planning permission, but I will spare you this bit as it would probably entail a ten-page rant about how the authorities meddle in the small details of everyday life for ordinary people.
The roof was first on the list. Tiles, battens and felt were removed to reveal the underlying structure in perfect condition, contrary to what we were told 20 years ago. The new roof was soon in place and looks great. Next in line were the gables. Again, all of the underlying structure was sound. This has been fully appreciated by a number of wasp colonies. If we could collect rent from the occupants, we would be quite wealthy. The new materials are now in place and look great.
At the moment, work is in progress to replace the porches, both at the front and rear of the house. Both have been demolished. Our cats, Caesar, and Maximus were not happy about this as the weather has not been so good and their shelter is gone. Also, it means that they can no longer easily reach the window to inform us when it is time to come in. The preparatory work for the new porches (I almost wrote Porsches, which would be something completely different) requires a good deal of excavating, turning the garden into a muddy quagmire, which is again not well appreciated by our cats.
The demolition stage is now completed and has been replaced by the sound of hammering as the first beams are put in place. Hopefully all of the work will be completed well before Christmas so that we can enjoy snowy evenings in the jacuzzi and drinks in the conservatory. (I used to say that the only good tory was a lavatory, but now I should extend this to a conservatory).
Over the past couple of weeks, I have had time to think back and reflect over events from years gone by. Most of the time they are events that leave me with a smile on my face as my fond memories far outweigh the bad ones. While I share some of these memories, I would like to emphasise that I am in no way checking out, I am determined to get my three score years and ten and a good bit more! The result being that you will have to be prepared for many recollections of happenings from the past. The memory does, however, work in a not completely reliable manner so some of the memories may be a little bit muddled, some may be a combination of several events and some may be completely fabricated. I leave it to you to judge the value of each and claim artistic license as my defence.
Some years ago, not too long after my initial move to Sweden, I took a short break in the UK to visit family and friends. Being a poor (under-financed rather than sub-standard or the subject of pity) post-graduate student, I travelled by train purchasing an Inter-rail card for a fairly small amount of money. I had taken the 13:08 train from Stockholm to the Hook of Holland and from there the ferry to Harwich for further travel in England.
I had gained experience from previous trips that after 24 hours on the train a shower was definitely in order. I had also learned that the crew were generally all involved in preparing for cast off prior to departure, so I snook down into the crew quarters for a quick shower and change of clothes before leaving the dock.
On this particular occasion the weather forecast was for strong winds reaching gale force. I therefore ensured that I got to the restaurant as quickly as possible. On arriving and taking my seat in an almost empty restaurant the waiter immediately informed me that there would be no soup served during the voyage. I ordered a pint of bitter and a simple pie and two veg meal. The beer arrived in two half filled pint glasses and the journey began. The boat lurched from side to side while I with good appetite ate my dinner. When I was done I asked for the bill, but was told that it was on the house as they were impressed that I ate at all considering the weather.
On reaching Harwich I proceeded to Reading vis London. I must admit that I was a bit sea-sick once back on terra firma. In Reading I was met at the station by my old college friends, Debbie and Tim, in their Triumph Spitfire – a lovely car, which they let me drive a little bit the next day. Debbie and Tim have owned a number of properties over the years. One thing that they have all had in common is that they, in one way or another, quickly resemble a building site. The house that they lived in at this particular time was their prototype. When we arrived at the house, I felt that the grime of travel was still present so I retired to the shower. Just as I was about to step into the shower a hand appeared through a hole in the bathroom floor presenting me with a very welcome beer. That’s what I call service! In return, I could use some of the newly redundant piping in a novel and entertaining manner.
I was at the hospital, earlier today, to have the stitches/staples removed from my head. I was more afraid of this procedure than of the actual operation. I think that is due to being able to relate more to the smaller scale of intrusion that the removal of stitches entails.
The nurse was very gentle and the whole procedure took just a few minutes. The staples have been replaced by a couple of band-aids. They should be painful when the time comes for their removal. Due to the risk of causing skin irritation or infection, I am prohibited from washing my hair until Friday. Not a good situation for those around me.
It has been a real pleasure to enjoy the most simple of things, like being at home over the weekend.
Yesterday, the whole family was together so we got to relax and play together. I really recommend ticket to ride as a fun yet challenging game. Yesterday we played the North America version, which is a bit simpler in terms of rules, but requires a more strategic approach. We also have the Europe version, which is fun to play. One rule is that the person who has visited most of the destinations on the map gets to start. This means that I always get to go first. This, according to me, is a disadvantage as I have never won a game.
I also got to spend some time playing with Felix who seems to appreciate his Taid’s sense of humour. (Taid = Granddad in Welsh)
Topherblog 