Part 2 – Possibly the best week of my life: The 1st biopsy diagnosis, further treatment, next steps and head shaving!

Returning home

Since I returned from hospital on Friday 30th May, three days after my brain surgery, life has been brilliant. Recovery from the surgery has gone as well as I could have hoped as I have complete use of my body again and no effect on any cognitive functions, my mind is feeling as sharp as ever which is a great relief to me. The lingering weakness from the muscle atrophy that occurred in the two-three months prior to the operation has meant that there is still a clear imbalance between my left and right side, but this has improved dramatically over the past week, in fact my teeth have never felt so clean (I had trouble using my left arm to brush)! I have been working on the leg muscles through a combination of squats and held leg raises which have definitely had an effect as I am now getting told off by Em off for carrying chairs and bin bags up and down the stairs! The pull-up bar I ordered just as lockdown started has finally arrived, although my absolute lack of core strength at the moment will mean that it will take a few weeks to get using that. I joined @SarahMalcs (follow her on Instagram, class details on her profile) for a Zoom yoga session and will do so again in the future, so if you want to see how I am getting on with my Downward Dog, join us as well!

My sleep is still limited with the effects of the steroids and I have been averaging 5hr20m last week, but we are now reducing the dosage and should be off them fully in the short term on the 20th June. I am sure I will miss productive early mornings though (I am typing this at 5am currently). The lack of sleep isn’t really affecting me, although I notice my stutter has got slightly worse but this was always a consequence of being tired or hungry so there is nothing to worry about. Especially as I have been talking A LOT over the last few weeks! 

Before I get into further into the detail with the post and an update on the diagnosis, I just want to say that the response from the first blog post has been overwhelming. It has somehow been shared all over the world with almost a thousand unique readers in 23 countries. I am honestly excited to have a continued project to focus on in sharing my journey and my learnings as I progress further through this. Thank you to all those that have shared it with their networks, I am more than happy for others to do so if they feel the story will be of interest. Getting 170 likes on Facebook was a big enough buzz for me, I can see how people get addicted to posting content as engaging with people is a great feeling. Although Em did still get more likes on her sharing of my post, so I shouldn’t let my head get too big just yet! But even more encouraging are the messages from people I haven’t spoken to in years or in some cases have never even met, in some way, these have had the most impact as it feels so good that the story can be of interest. First and foremost this blog is being written for myself to ensure that I capture the range of emotions and feelings that this experience is giving me, but if it can also serve as a distraction or dare I even say entertainment for others, to perhaps even put a smile on someone’s face, then that it is a massive win for me!

The 1st biopsy diagnosis (the results we have been waiting for)

To get into it I will jump forward a bit to Friday 5th June and the appointment with the initial histology report, as the results are the elephant in the room. Waking at 4am I had some time again before having to leave the house at 8am, but being able to get up very slowly in the mornings has been such a pleasure. Taking a long morning shower, now with the safety of a brand new shower mat, has become even more of a delight, especially as I am now able to stand with just my left again so I can efficiently scrub my right foot. It is amazing how having something taken away from you, even for a short time, comes to make you realise just how much you miss it and clearly being able to wash my toes was important to me! 

The lovely Claire Keen arrived at 8am wearing a mask in her car to drive us to St Bart’s hospital in St Paul’s for my 9am appointment, so we didn’t have to travel in an Uber (thanks also to Steph Bancroft for the return journey home). Again I felt lucky in my situation that the specialist oncologist nurse gave an exemption to allow Em to come along with me to the appointment so I didn’t have to take in all of the information on my own. After a short queue accompanied by a very liberal squirt of hand sanitiser and a quick temperature check we were at the clinic by 8:55am and into see Dr McKintosh and the neuro-oncology nurse specialist Hannah at 9am on the dot (I love that efficiency!).

The first thing Dr McKintosh showed me was the MRI scans from pre and post operation, this truly amazed me! At its largest point the tumor was 5.22cm long and roughly 3cm wide, making a small rugby ball shape in my brain. The fact that something that big was in my head and only affected me as little as it did it, is astounding. Sure I had lost some of the use of my left side, but this thing is almost like a tennis ball in my head! I now realise why the A&E doctors got Em in immediately on the first Friday. 

The second MRI, post-op, revealed the 70% of the tumor which had been removed and the difference is night and day between the two. Dr McKintosh was impressed by the work completed by the surgeons to remove as much as they did so cleanly – perhaps they say that to everyone but it again made me grateful that I was in one of the best hospitals in the world with one of the best surgeons for the operation. Brilliantly, I was told that I should be able to get my hands on all of the MRI and CT scan images in about a month so I should be able to share these with you all in a future post, so you can see with your own eyes what was inside of me!

On to the results, I will note at this point that we are still waiting for the full molecular analysis results which will be shared in a follow-up appointment on Friday 12th, but they had received the results back from the macroscopic (naked eye), microscopic and histological analysis so were able to share a somewhat detailed update. 

So what is this thing?

• It is definitely a primary brain tumor. There was a hope that it could have been a recurrence of the Wilm’s tumors that I had in my right kidney when I was nine years old, which would have been a good thing as Wilm’s tumor is treatable with chemotherapy, but this is now off the table.
• It is instead a high grade glioma, most likely an Isocitrate dehydrogenase (IDH) mutation. Gliomas are graded on a World Health Organisation scale from grade 1 to 4 (with 1 being the least impactful and 4 being the most aggressive). What I have is at least a grade 3, with it most likely being a grade 4. Dr McKintosh didn’t use the word terminal explicitly, instead preferring the term life limiting but to be clear this will mean I am extremely unlikely to make it to 90. Although for most that know me well, getting hit by a bus at 40 was always the most likely outcome anyway!
• A small hope is that the immunohistochemistry supports the possible diagnosis of an anaplastic oligodendroglioma which is classified as grade 3, but the IDH mutant remains the expected diagnosis.
• I was told the typical life expectancy for a grade 4 IDH mutant glioma is about 14 months on average with a grade 3 anaplastic oligodendroglioma being somewhere between one and five years. Although I would note that Dr McKintosh did mention he has some patients that are still going 15 years later so there is a small chance of a path into a typical mid life crisis.
• As mentioned above we should have full confirmation by the end of the week (12th June). 

Shout out to Professor Silvia Marino (Hon. Cons. Neuropathologist) who completed the analysis, your work is appreciated! 

For those that are really interested in the details and have an appetite for research, below is a screenshot of the full test results where they get into things like “nuclear pleomorphism is prominent and mitotic activity is brisk”. I have been Googling most of the terms to understand what it all means but as someone who is missing a bit of brain at the moment it has gone over my head a bit!

I was told that because I had been placed onto anti-seizure medicine I now have to give up my driving licence for the next 13 months at least, which in itself isn’t a problem as I had only driven once in the last 12 years (and this was stock car in a field in Estonia), but it also means that I can’t technically ride my bicycle for the same period – should I be involved in any accident I would be liable, which is a tad annoying, especially as I had just bought a swanky new road bike in early April. 

Removing the stitches

Following the appointment with Dr McKintosh I was back out into the waiting room before being seen by Nurse Armando to take out the ten sutures in my head. The procedure took about half an hour and mostly because of the great care he took in ensuring the tools were fully disinfected. I will admit the actual act of him using the scalpel to snip away was slightly unnerving, but even as I type this now five days later the scar itself is still numb so there was no pain at all. 

Treatment 

Understanding what this thing is means that we now also know what the next treatment steps are to try and fight it! So next up was an appointment with Dr Francis the Consultant Oncologist at 11am. In my case, the treatment means I will be starting radiotherapy in the next two to three weeks to begin blasting what remains of the tumor in an attempt to kill as much of what remains as we can (without targeting any of the good brain cells). While they attempt to get as much of the tumor as they can, they will stop if there is a risk of a loss of normal brain function which means there will always be some small part of it remaining that will eventually grow back which is effectively why it is “terminal”. 

The first step of preparing for the Radiotherapy will involve creating a mask from a moulding of my head that I will wear throughout the procedure, so that I can be fixed in place in the machine. In this way they can shoot three radioactive lasers with extreme accuracy to reduce the risk of hitting the good cells. This procedure will be once a day for between 5 and 15 mins (what they call a fraction) for five days a week for six week so as to limit the radiation that I receive at one time. To mention here, Em and I have recently been watching all Marvel films on Disney+ in the narrative chronological order (so starting with Captain America then Captain Marvel) so we are both acutely aware of the consequences of getting too much radiation at once as evidenced by The Hulk! I don’t think the world needs a big green version of Dave running around smashing things, so I for one am happy with the conservative approach taken with the radiotherapy by these experts for all of our sake. 

I had been doing some Googling prior to the appointment to understand the effect radiotherapy may have on my body especially with the context of COVID-19.  The first search results – as with most health related googling – painted a grim picture of me becoming severely immunocompromised but thankfully Dr Francis seemed quite relaxed about it. I am not sure if this is a consequence of the infection rate dropping as a whole, but she explained that as long as I was cautious and maintained a good 3m distance there would be no reason why I couldn’t see people in an outdoor space throughout the radiotherapy which is a great relief to me – I was concerned that I would have to become a complete hermit for the rest of the year by shielding myself. This isn’t to say I can take risks but it does mean that I will be able to see people as long we can take precautions of wearing masks and keeping a good distance in a garden. 

In other good news Dr Francis explained the possible effects to my body throughout the radiotherapy, which seemed minor, compared to my expectations. Obviously, we won’t know for sure until we start the treatment as every person reacts differently, but she explained that a lot of people see almost no impact directly from the treatment and are able to work on the same day. I will likely have to go back on to steroids again, which means that my sleep could become disrupted once more, but as I said earlier that really isn’t so bad if I get an extra few hours in the day to be productive. I may see a small amount of hair loss at the three points where the radiation is directed at my head, but this normally grows back albeit slightly thinner. My plan is to try and use the next three weeks to get my body into the best shape as possible so that my health and fitness limits the impact of the treatment. 

Once the radiotherapy is completed it will then, almost certainly, be followed by some sort of chemotherapy. The exact details of this are still to be informed by the full molecular analysis. The enzyme make-up of the tumor will define what is the best course of treatment. I have been interested to learn that there are a lot of different types of chemotherapy treatment and my first experience from fighting cancer when I was nine is no longer typical. Back then, it took the form of my receiving the chemo drug once every three weeks via an intravenous hickman line that was connected through my armpit then wound its way through my body into the kidney area. Each treatment would take around eight hours for the bag to fully empty into me and for the duration I would have constant nausea. I think the record was vomiting 18 times in one day and obviously at that point there was nothing left to come up so it was a painful experience. This combined with a lack of appetite meant that I lost about 30% of my body weight on top of the expected effects of complete hair loss and muscle loss. I remember the most annoying part of it was not having any eye-lashes which meant that I would have to pull apart my eyes in the morning as the ‘sleep’ gunk in my eyes would keep them held together. 

This time around I may again get the intravenous method but the alternatives could be a simple injection or perhaps even a pill which means the process may not involve an overnight stay in hospital. Thankfully I am also learning that there are now a vast array of medications that can be taken alongside the chemo to limit the other effects; anti-nausea medicine is now often very effective in controlling vomiting so I am very hopeful that the experience this time around will be a lot better than what I faced 20 years ago. As a result, once again, I feel lucky for two reasons; that the science has progressed so much, and the negative experience from when I was nine forms a baseline – which I feel in comparison I will smash it this time!

Reflecting on the morning as a whole, it was clearly a strange one for, finding out that I have terminal brain cancer is a shock but it really didn’t affect me at all. I think it is because the news I received only confirmed the worst case that Dr Alex had explained to me in our conversation prior to the brain surgery, and had been processing for the past two weeks. While a small part of me was hoping for the news it was benign I had fully prepared myself for the worst case, so in speaking to Dr McKintish and Dr Francis I was completely calm throughout and was able to maintain composure so that I could ask the pragmatic questions.

One such question we did have was to understand whether sperm storage was an option, knowing that chemo especially could affect my swimmers. Thankfully this is a free service offered by the NHS to people in my situation, so immediately following my conversation with Dr Francis I was having some blood taken to screen me as part of the first step in the process. This means I should find myself in a room with only a top-shelf magazine and a small cup for company in the near future (which is how I imagine it)! Although I would note that Dr Francis did make it clear that while we have the option of the sperm storage I may not be around long enough after the treatment to actually be able to see something grow. To be honest children are not something on my mind right now anyway, even despite becoming an Uncle for the first time last week. But it is just good to know that if we do see the best case scenario with a grade 3 and I get another five years, that we have options. 

Next steps 

The daily travel to and from the hospital over the next two months does present a risk with my exposure to COVID-19, as Em and I don’t have a car it would mean that the daily travel to St Barts in St Pauls would most likely need to be taken by Uber which is not the best idea. Because of this, Em and I are going to move in with Em’s brillant sister Orla, her husband Jim and baby Erin in their house in Chipstead (south of London) for the duration of the radiotherapy, which is ideally located just nine minutes from the Royal Marsden, Sutton. The house has a big garden and the house itself is a quiet two minute walk away from a huge wood so I will be able to get outside without being too risky. Jim has even started on getting the internet upgraded for me so I can play Call of Duty without the risk of lagging! This is just another example of how I feel incredibly lucky to have options throughout this whole experience and will always be grateful to Orla and Jim for the opportunity to complete my treatment in this great setting. 

To now jump back a bit I want to recap what has happened in the week following my leaving hospital and the appointment on Friday 5th. This last week and a half has genuinely been the best of my life, I have never spoken to as many of my friends and family, and am feeling so connected to the world at the moment. The situation has led me to reconnect with people I haven’t spoken to in years which has been brilliant, shout out to Hannah May Sadler who I hadn’t spoken to in over five years but I loved the hour we spent on the phone. The situation has also made me realise you can’t allow any bullshit to get in the way of life, through circumstances I won’t go into I hadn’t really spoken to a work colleague properly for about six months but the first thing I did when I started back at work last week was to reach out to  him to put the negativity behind us. If there is any advice I can give is call up your old friends if you are thinking of them, instead of just dropping a few texts over WhatsApp. There is nothing better than a verbal catch-up and it exposes things that wouldn’t be shared over a couple lines of text. Make the call now!

Every conversation gives me a high as people have shared updates with their lives, many offering personal experience from friends or relatives who have gone through similar journeys. I have learnt so much more through these conversations over the past week or so than I could get through aimless my Googling. I have honestly been buzzing the whole time I have been home as I come to realise just how great my life is in so many ways. I said this in the previous blog but will repeat it again, I really can’t find fault at all in the whole experience. This may be because I haven’t fully comprehended the impact of my diagnosis but I don’t think this will truly hit me until the very end when I actually start to see another decline. All I can do right now is live in the moment, and in this moment I feel so full of life!

The best week of my life

So what have I been up to during the best week of my life? Well I was back working from the first Monday after coming out of hospital. At first doing about 4-5 hours a day but I am now almost up to a full eight hour day, and I am loving it. I am very lucky to really love my work and this is helped by having a brilliant team to work with at Serco on our London Cycle Hire contract where we manage Santander Cycles on behalf of Transport for London. The scheme has exploded in popularity over the last month as a means of safely travelling without risking exposure to COVID-19. Typically we would see around 40,000 daily hires on a great day in May but the scheme somehow got to over 70,000 on a day a few weeks ago, so there was no way I wasn’t getting involved when it was kicking off so much. Being back at work with Serco has definitely helped me mentally and I am so thankful to work for such an amazing organisation that has been so supportive from top to bottom. #sercoandproud Special shout out to my boss Sam Jones who has been brilliant throughout and shown flexibility in a way that has made working nothing but a good thing for me. In part, I think this is because the week spent at the Royal London Hospital was so stress free that I almost feel like I had a week on a beach, I do definitely feel mentally recharged!

Outside of working I have had a steady stream of visitors popping over to see me which I feel very lucky about, as following the work done in the garden by the Uni boys the previous weekend and the sun loungers that Mike, Sarah, Colette and Joe got me, I am able to sit in comfort outside if isn’t raining (sometimes, even when it is raining – us Northerners are made of strong stuff) and happily chat along whilst maintaining a good 3m distance. I will be in Maryland for another week or so, and am more than happy to accept visitors if anyone wants to make the journey to sit in our front garden. I have a lot of beer and snacks that someone needs to get through, so you would be doing me a favour!

I have also made some big changes to my diet to try cut out anything supposedly cancer causing. This has included giving up all alcohol (in fact all drinks apart from filtered water and green tea), switching to a vegan diet (apart from fish for the next two weeks to help the brain heal) and stopping eating all processed foods or anything with added sugar. I have loved the change so far, apart from a jackfruit curry which was trying to be something it wasn’t and left me wanting). Already I am seeing the benefits in my bowel movements as wiping has almost become a thing of the past, I know this is weird to talk about but seeing my body respond in this way validates it in my mind that this change is good for me. I will save the details for a future blog post, as I learn more about how my body responds to the new diet, but in the short term I am all in and enjoying it!

Shaving the head 

I had two of my oldest friends in Ella and Rob over to help document Em shaving my head, which I think is a look I am pulling off. This was a strange experience, as the mains powered shaver was vibrating a lot but the numbness of my head meant that it didn’t translate as expected.

To leave you with a final thought for now, don’t any of you lot be worrying about me. Despite the diagnosis I have received, I want you all to know I am being genuine when I say I am in a brilliant place at the moment, I mean that both from the mentally perspective but also in living with a fantastic partner and being surrounded by great friends and family who are holding me up above anything that could meaningfully affect me. Whatever this journey will hold for me I can assure I will be smiling the whole way through it and enjoying the countless positives that I am continuing to encounter at every turn that make me feel so buzzed about life!

Next up I want to do another list of thank yous for all the amazing gifts and cards I have received. I know you haven’t sent for them for thanks but I am truly appreciative and I want to make sure I keep a record for myself as a reminder:

• Hand written cards from Shaun Stacey, Jerry & Lesley, Kev & Shirl, Anne & Ian Wild, Ann & Ian Parker
• Lift to and from the hospital for my appointment from Claire and Steph
• Riverside veg box and high grade hand sanitiser from Orla and Jim
• Handmade fabric face masks from Rosie
• Flowers and card from Hannah May Sadler and Mick
• Flowers and the all natural date and nut slices from Sedge and Claudia (these taste incredible, recipe to follow at some point)
• Lost Cities and Hive Pocket games from Helen and Matt
• Vegan cookies from Ella
• Switch games from Ducky and Olly
• Assorted tasty snacks from Liv
• A huge goody bag of diet friendly snacks from Kieran and Mecia
• The food drop offs from Jessie and Nathan, Rik Grayson and Claudia
• Curated list of films and podcasts from Danny
• The colouring book from Boyney
• The cloud book from Greg and Kim
• The box of smelly stuffs from Helen and Glyn
• The slow cooker from FB
• The homemade vegan cookies from Charlotte, and the handmade masks from her mum
• The vegan Mindful Chef food and recipe box from Rachel and Sam (godsend for inspiration)
• Bish Bash Bosh cookbook from an unknown person (let me know who you are!)
• The huge bag of walnuts from another unknown person (again, please let me know who you are)
• The ‘anti cancer: a new way of life’ book from another unknown person (please let me know who you are)
• The vegan hamper.com hamper from another unknown person (please let me know who you are, as we have an unboxing video to send you!)