David’s brain cancer journey – Part 1 (March to May 2020)

Long post below….

Roughly coinciding with the beginning of the COVID-19 lockdown I began to notice a slight weakness on my left hand side of my body. First spotted when I had to stop quickly on my bicycle whereby putting my left leg on the ground it collapsed under me. Over a few more weeks this turned into a more defined weakness in the leg that left me struggling to even lift it over my bicycle seat, which worsened still leading me to drag my leg while walking. My initial thought was that it was a consequence of lockdown life, perhaps a pulled muscle from not stretching through being stuck inside and working from home (I would add that I have always been a woefully inflexible person who struggles to touch my ankles when standing up, let alone my toes), so as any good millennial I started on a more disciplined approach to my exercise to try and remedy my situation.

This involved yoga sessions with the fantastic yoginis @Sarahmalcs and @mymatekate (they are still doing regular classes over Zoom and would wholeheartedly recommend them both) and stretching at work lead by Nadia Khalaf, regular 5K runs and home based workouts such as crunches and push-ups. Going into mid-April I was feeling great. But as the weeks passed I noticed my left arm strength also starting to fail me as  I went from being able to do a couple quick sets of 20 push-ups to struggling to be able to do 10 at the start of May. 

The symptoms worsened further as my left sided core muscles began to atrophy which meant even moving over in bed a real struggle (much to the annoyance of Em, as I instead would attempt to lift myself with my right side, twisting in mid air before hopefully landing in a more comfortable sleeping pose only after creating tremors that no three inch mattress topper could hope to contain! The condition left me struggling to brush my teeth as a leftie.

Clearly this wasn’t just a pulled leg muscle, so after the best advice from Sophie Harvey (our friend and doctor) I went to A&E at Royal London Hospital on Friday 19th May at 7:30am on the basis that they have MRI scanner and a top neurological ward so should be able to get to the bottom of this. At this point I will mention the COVID-19 situation again, as A&E was practically empty as I was seen by seven doctors in about five hours as well as quickly receiving a CT scan of the brain and abdomen. (To pause here, I would urge all you to see a doctor if you feel there is something wrong, the hospital was of course spotless and felt far less likely of catching coronavirus while there compared to my trip to Tesco the prior day.)

The CAT scan diagnosis

On to the big stuff… While his colleague struggled for 10 minutes to find a vein to grab a blood sample a great doctor called Harry sat down and explained they had found a 3-4cm lump on the brain. At which point they called Em to get her to come to the hospital to be with me for the day. This is the first part of the story that makes me feel extremely lucky. For the one week stay I was in the hospital I didn’t see any visitor to any patient but Em was somehow able to stay with me until 9pm in the evening, perhaps this was because they felt it very severe but I won’t dwell on the reasons for Em’s admittance only that I was and still am incredibly fortunate to be with her for support. For all those that know her you will already know she is the most caring person so to have her with me on the first day was such a blessing that was not the case for any of the other patients in the hospital. 

Once the conversations were out the way I was moved to a four bed ward on the 11th floor, where straight away I could tell the experience was going to be a lot better than my first dance with cancer 20 years ago where was housed on a long ward at Pendlebury Children’s Hospital in Salford (built in 1829 but now closed, in 2009) with about 40 other children patients and which constantly smelled of high strength cleaner whereas the The Royal London is almost space age in comparison with its huge windows with incredible views of the London’s skyline. It was spotlessly clean but with none of the nauseating smell of disinfectant. 

While I had would have to wait for an MRI for the doctors to have a better idea of what this thing was I did have some very positive news in that the results from the abdomen CT scan showed nothing on the rest of my body, so it was just the brain we were going to have to deal with which really boosted my mood! It was of course strange situation going to bed in a ward on Friday night, as I can’t say it had really crossed my mind at all to think that a brain tumor would be the cause of my problems, with all these possibilities running through my head it was an unusual mix of emotions and feelings but I can honestly say in the few hours that it took me to nod off that I have not felt that positive about my life in ages, my mind was awash with thoughts of how good my life is; an amazing partner, brilliant family and friends, a  job I enjoy. It is hard to articulate the thoughts but I can say with certainty I did go to sleep quite content that night.

While it was confirmed I would need brain surgery on Friday, for the next three days I was in a bit limbo as I waited for the MRI scan on Monday that would give the surgeons a better idea of exactly what this thing was to inform the next steps. One thing that did start immediately though was a course of heavy steroids that left me wired for most of my stay – the hope was that the steroids would reduce the swelling caused by the tumour on the brain although I would admit I never really noticed a difference but perhaps the situation would have worsened even further without them. It did mean that this cocktail of steroids and sleeping in a foreign space meant that I didn’t ever get more than four hour sleep each night during my stay. This course of drugs will continue to the end of June as I am weaned off them, but the positive from this is I am now productively typing this blog at 5am after already completing my daily left sided exercises. There are suddenly so many hours in the day to get things done!

While on the ward the care is so focused on recovery, I really can’t fault the level of care I received from the whole of the care team, I had a mix of both the nurses (shout out to Lami) and healthcare assistants (big up to Lyndon) who had a dual role of caring for us patients and ensuring the few flight risk patients didn’t try and escape. One such patient was Dennis, a 77 year old racing pigeon trainer who had had a stroke following brain surgery earlier in the year (he was born in a house in Bethnal Green that we could see from our window). All he talked about was his birds so twice tried to leave the ward to get back to care for the pigeons. In the end they had to fit him with an alarmed ankle-band which would go off if he somehow got as far as the lifts.  For me perhaps the best bit was the food which is brought to you in bed for breakfast, lunch and dinner with tea/coffee and an optional snack in between so I quickly became accustomed to the easy life. WIth a big bowl of porridge to start each day followed by some macaroni cheese with steamed beans and carrots. All lunches or dinner were followed by a great dessert such as sticky toffee pudding or jam sponge always with a liberal serving of custard or ice cream to help ease it down. 

The food service and time in bed quickly lead me to develop a case of what some of the nurses called “gown syndrome” where just being in hospital leads you to becoming lazy. This was one thing I have been in training for the past 30 years!

The feeling of contentment from Friday continued as I got to know the staff and fellow ward mates over the next few days. Being connected with a smartphone and good WIFI meant it was very much just like being at home throughout lockdown, but for some of my new older friends such as the widowed Paul, who only spoke to one person on his old Nokia once throughout our three days, for him, (and others the COVID-19) hospital experience was no doubt extremely isolating, where he spent the majority of the time sat by the window in silence. I again felt very lucky to be so digitally connected to my friends and family despite not physically seeing anyone. Each phone call felt like a drug, that each time helped to further normalise the emotions and very quickly got me to a happy and mentally strong place. To all of you out there that I spoke to on the phone or over WhatsApp, I can truly say that made all the difference for me while in there, so thank you!!

I spoke to one patient, David H, a 57 year old retired logistics driver from Dartford, for about five hours on Sunday discussing family and life.  David had come out of brain surgery on Saturday having had a similar brain operation to me. It was therapeutic for me to understand his emotions going into the surgery so I could attempt to prepare myself. His situation was far worse than mine in that the cancer had also spread to his liver and kidney and he explained that that the hospital visit would be repeated in a few weeks in Southend as they would aggressively go after the liver to try and save his life with chemotherapy. Having been limited to phone call appointments with doctors prior to his admission to St Barts he had been told very little about what to expect so I shared the experience from my first fight with him to prepare him and show that it is a fight that can be won. Having been in the hospital and away from his family for the five days prior to the operation I think we were both grateful to have someone to talk to at length. The conversation ended with a few teary eyes from both of us as he told me that speaking about his life and family earlier in the conversation had made him realise that he had something he was going to fight for! 

On Monday I went for my MRI which is basically a big magnetic circle that they stick you through as they scan you to create an accurate image of what is going on inside. While the machine was incredibly noisy for the 40 mins I was in there I was given ear protectors to drown it out. As my head was strapped, in my sleep deprived and sensory deprived state the noises became hypnotic as I almost drifted off a couple of times,  I am sure some inspired DJ somewhere has sampled the MRI in some big techno tunes somewhere on the internet!

The MRI diagnosis 

After the MRI I was back to the ward until the evening when I was seen by another great doctor, Alex, who runs a teaching charity in his spare time for Junior surgeons, who sat me down in a private room to discuss the prognosis from the MRI. What had been found was a 4cm tumour on the front right lobe of my brain with a foie-gras like consistency that was creating pressure on the brain and effecting the left hand side of my body (From Google:The left side of the brain is responsible for controlling the right side of the body. It also performs tasks that have to do with logic, such as in science and mathematics. On the other hand, the right hemisphere coordinates the left side of the body, and performs tasks that have to do with creativity and the arts.) The initial hopeful prognosis from Friday that it was benign was scrubbed and replaced with a with a more likely case of it being an aggressive brain cancer. This was a shock. Following this I was informed the next step was to operate the following morning for two reasons:

1. To take samples for a biopsy of the tumor so they could run tests to fully understand what it is to inform the next steps of the treatment.
2. To “de-bulk” as much of the tumour as possible to reduce the immediate impact it was having to be body. 

They took me through the risks of the surgery (0.7% risk of death, stroke, bleeding on the brain etc.) and asked me to sign a consent form to allow them to proceed. There was no doubt in my mind of course that we had to push ahead with this, the surgery I had been prepared for since Friday (although I will admit I had not not fully comprehended the risks) was just something we had to get on with. Thankfully Alex called both Em and my parents individually to clearly explain our conversation to them. 

During my sit down with Dr Alex my bags were moved to a private room, so sadly that was the last time I saw my new friend David as he was due to leave on Tuesday. But I was able to jump onto a Zoom call with some uni friends which helped immensely in trying to rationalise and normalise the situation through a game of Psych. I was told I still couldn’t have a visitor but upon Dr Alex’s suggestion I was able to coincidentally bump into Em in the smoking area for 15 mins and hold her latex gloved hand which is another thing I feel incredibly grateful for. 

The surgery

I was told I could not drink or eat from midnight to prepare for the operation, so I set about drinking as much water as possible and eating as much of my Auntie Helen’s incredible fruit cake that Em had brought in to ensure that I wasn’t too weary when I would awake from the surgery. Having spoken to those I needed to, but with my head swimming with thoughts I decided I would try and turn on airplane mode and zone out by watching the highly engaging Last Dance on Netflix (the story of Micheal Jordan and the Chicago Bulls from the 90s). Once I was awakened at 4am for my blood pressure check I got up, showered then  resumed the show but realised that I may not have enough episodes downloaded to take me up until the operation. So I turned off airplane mode for a couple of minutes to get one onto  more on my phone, but as soon as I did almost 50 messages of support flooded onto my phone over WhatsApp and text. I will admit this was a bittersweet moment as I was intently trying to not focus on the risks of the operation so while I didn’t read them properly the love and support I felt in that moment was what got me through the surgery. 

At 7am a nurse visited to give me the “pink drink” which is a liquid that would cause my brain to glow when under a certain light to aid the surgeons. Once awake I ensured I had a deep clean shower assuming that I may have difficulties in being mobile for a few days afterwards. I was wheeled down to the operating theatre at about 8am, thankfully a nurse came with me so I could keep my phone until I was given the first sedative so I could continue to zone out with Netflix, another instance of the team going that extra mile to make sure I was in a good place. Following a quick chat with the head surgeon I was quickly lost to the world. I was told the previous day that surgery could take all day but my understanding is that they started around 11am but I was awake from 3:15pm so only took around four hours, which I take as a good sign. Dr Alex came to see me again at about 3:30pm to tell me the surgery had gone well and that the head surgeon had just called Em to give her an update.

Initially the only effect I noticed that there was a big delay in being able to move my big left but over a few hours of wiggling this came back. For the next six hours I just sat in bed chatting to the nurse Gladys about her delayed plans to move to Melbourne, again the COVID-19 situation had an unintended positive for me as all non-essential surgery have been delayed it meant Gladys only had to deal with myself and one other patient so had time to give me as I waited for a bed to open back up on a ward so I could get my phone.

Once back on the ward I was switched rooms again with a new set nursing staff and patients all in a bad way following their various surgeries. I was blessed to have a bed right next to a big window with a direct view of my old ends towards the Shard and Guy St. Hospital. I jumped on calls with Em, family and friends for a couple of hours feeling very lucky to have made it through surgery and be feeling great. 

Post-surgery

The next few days were comparatively uneventful as I did very little other than rest but was able to get on my feet with a physio on Thursday to have a walk around the ward and up and down some stairs, as well as having a visit from the occupational therapist to take me through a few cognitive tests where I am pleased to say I scored well above average. 

I did have another MRI to check the brain post op, this time around it was a slightly different experience as I was able to choose a playlist from YouTube to listen to throughout the scan. I chose to listen to Gang Of Youths who created a personal favourite album in 2017, the music was played crackly through the headphones for the first 10 mins only to be interrupted by an advert for funeral insurance! I couldn’t help but smile. Then to add to the silliness of the situation the next track switched to All By Myself from Celine Dion for some reason by which point I was straight up laughing. 

The 2nd MRI, post-surgery

Once back on the ward I had another visit from Dr Alex to talk through the results of the second MRI and to talk in a bit more detail about the surgery now that I was fully free of sedatives. The scan didn’t show any damage to the brain and that the 7cm tunnel they had made in the brain to get to the tumor had closed up nicely. They were able to de-bulk around 70% of the tumor which I think is good, thinking on it they could have just taken the whole brain so I suppose it was nice of them to stop at some point! The next step is the follow-up appointment this Friday at 9am where we should see the results of what this thing in me actually is, so as to inform the future treatment and also to get the sutures out of my head so I can give myself a good scrub! 

Last day in hospital 

After getting the good news from Dr Alex and by proving myself steady on my feet I was ready to leave on Thursday, two days after the ops and it was only a delay with the pharmacy that kept me in until Friday. The extra day did allow me a few more positive experiences as it turns out one of Em’s rugby teammates is a physio on my ward so had a chance to catch-up with a real person and chat about normal life outside. The big news Mascara Bar in Homerton, Hackney’s rugby pub, now has air conditioning!

Thank you for all the gifts:

• Charlotte Florence was first in with a huge goody bag of so many snacks and books to keep me occupied (and of course the hand made card) (the 2nd batch of food complete with pickles and peanut butter) 
• The “Stuff” uni boys who got me a Nintendo Switch Lite and some incredible Sony Bluetooth Noise Cancelling Headphones that haven’t been off my head since I have been off my head hospital, as well as the fresh frozen meals to save us stress in cooking while back at home. 
• The bread, pastries and salted caramel vegan protein powder from Robert Briscoe.
• The handwritten letter with a copy of Hemingway’s Old Man and the Sea and chocolate from James Orr. 
• The unknown Doctor from the 7th floor who delivered the  care package organised by Rachel Wild.
• All the cards from Jack and Guy, Hana and Jamie, Sam, Rach and Eddie, Joe and Collette, Mike and Sarah, Claire and James, Suzie, Jess and Nathan, Tom and Amy, and Rich!
• The yummy homemade cookies from Jim Ryan and for the hair clippers research.
• The flower cookies from Jessie and Susie.
• The complete landscaping of my garden by Ryan, Cam, Piers, Brimble and Jack (Kieran had beers with great energy) so I will have somewhere to sit in the sun while self isolating. 
• The fruit and veg drop-off from Shan (and the huge packet of pick & mix).
• The vegan books and nuts from Chepstow Steph.
• The hand drawn cards from Hubert’s girls.
• The metal dice sets, dice roller and cotton armour from the Fantastic Floor D&D boys
• The lawn chairs from Mike, Sarah, Joe and Collete
• The backgammon set for my work LCHS Serco team
• The make-your-own Pizza Pilgrim set! This didn’t come with a name so please let me know who you are!

What I want to take away from this:

• The experience as a whole from being in Royal London was outstanding, the care I received from the whole team from the nursing staff, to the healthcare assistants, to the catering staff who kept being fed constantly, to the porters that safely maneuvered me around the hospital. The NHS and their suppliers are incredible and I need to never forget that. 
• Having a catheter was a dream not getting up to go to the bathroom in the night, instead being singularly focused on hydrated was something I would go back to. There is a winning start-up idea in that if someone hasn’t already beaten me to it. Also I am seemingly less bashful about showing off my penis to friends when I have a catheter fitted. 
• Talking is the single best therapy and I am so lucky to have people around me that I could call on throughout. Each call allowed me to process and normalise my emotions which was the biggest single reason I am feeling the way I am now! My one advice is talk to people about your problems you will be greeted with invaluable support which seems like the best deal ever.
• Get yourself someone like Emily Barron (you can’t have her, she is all mine) who was a selfless rock throughout for me. Big thanks to @Brook Lightfoot who supported Em in a big way throughout with cooking the curried cauliflower, doing the washing up and no doubt providing all the support which allowed Em to be as strong as she was for me. You having been cleared of COVID-19 the week before so you could be with her guilt free is just another sign of how the world was working for me!

The final take-away is that I am feeling as good about life now as I have in years, this may in part because the experience was arguably a holiday (apart from the brain surgery) which allowed me a week to recover and decompress in the best environment for my situation. So this blog post and those in the future is my way of sharing a rather detailed update for anyone who is interested (well done for those that got through it!) and record the memories of this unusual but somehow super positive time in my life. 

All of the love in the world to all you brilliant people!

David 🙂