Part 3 – The final diagnosis, cleaning the pipes and Time.

 Hello everybody! 

Another fantastic week being able to see a lot of visitors, eating amazing food and playing a lot of Dungeons and Dragons! I also had two appointments on Friday 12th June, one at 9am with the Embryologist for the sperm storage and another another at 11am with Dr Rachel Francis the Oncologist and Nurse Hannah to go through the final molecular testing results from the biopsy. 

The feedback I continue to get from the blog is mind blowing, I see that the more I share the more I get back from the world. Five friends have put me in contact with people who have gone through very similar experiences which have been incredibly useful in understanding what is to come and what did and didn’t work for them. The blog has had visitors from 46 countries which is mad, so I want to say a big thank you to those that have shared this blog with your networks, and an especially big shout out to my unknown reader from American Samoa!

Final diagnosis appointment with Dr Francis

I will jump to the appointment with Dr Francis first as this contains the big news we’ve all been waiting for, but rest assured the sperm storage appointment story is well worth the wait!

REVISED FINAL DIAGNOSIS:

High grade glioma, IDH1-mutant, with molecular profile most in keeping with glioblastoma, IDH-mutant (WHO grade IV)

So what does this mean? Top-level, overall survival rates for a high grade glioblastoma (Grade 4) come with an average life expectancy of 12-18 months, with only 25% of glioblastoma patients surviving more than one year, and only 5% of patients surviving more than five years. This is the only timeframe that Dr Francis would share with me, but she was keen to impress that this is just a statistical range and shouldn’t be taken as gospel. 

To give further detail to my case, mutations with the IDH-1 gene have been found to be frequent in secondary glioblastomas, but rarely in primary glioblastomas. This means it is likely that I could have had this tumor for years growing in me as a grade 1 or 2, but it somehow changed into the more aggressive grade 4 glioblastoma. Unfortunately we will never know, as the only baseline we have is the first MRI immediately prior to the operation, so there is no way of telling how long it has been growing in me. The presence of the IDH-1 mutated gene is a good sign, as they are often linked with longer-term survival rates for patients. As I said above, Doctor Francis wouldn’t put a number on what this may mean in terms of extending the life expectancy, but she did say that as I am young, fit and healthy, and am not currently displaying any symptoms I should be hopeful of pushing towards the top end of the average survival time. Em is being very positive that we will smash it of course and I can’t help but agree. But I do want to keep in mind the worst case so I don’t allow myself to get too carried away.

It is not currently known why glioblastomas begin to grow. There’s currently no evidence to suggest that the tumour could have been caused by anything I have or haven’t done. Which is comforting for me to know that living my not-always-healthy-life prior to this, with drinking heavily and everything else wasn’t a contributing factor in the cancer! #noregrets #yolo #downwiththekids

Knowing exactly what this thing is means that we are also now clear on the treatment I will receive. I will be undergoing chemoradiation therapy for 6 weeks which is a combination of radiotherapy every weekday accompanied by an oral tablet of a chemotherapy drug called temozolomide. There will then be a one month pause to let my body recover before starting a further six month cycle of just the temozolomide chemo but at a stronger dosage. This will follow a repeating pattern of taking the drug daily for one week followed by a three week gap to let my body recover. Other good news is that my tumor has 0% unmethylated MGMT biomarker. Any presence of unmethylated MGMT generally means a poorer response to the temozolomide chemo drug. 

The basic idea is that the radiotherapy kills off as much of the remaining cancerous cells as possible, with targeted radiation. Whilst the chemotherapy aims to affect the DNA in cells to interfere with their growth and stops what is left of the tumour (after the radiotherapy) from growing.

As mentioned in the previous blog post there are side effects with both radiotherapy and chemotherapy but the potential benefits far outweigh the risk. 

Potential side effects of radiotherapy:

• Very small chance of stroke/loss of use of the left side of my body.
• Very small chance of cataracts (which could be treated).
• Possibility of fatigue.
• Likely chance of hair loss on my head where the radiation is directed, but this should regrow with a chance it could be slightly thinned. I may well be rocking the shaved head look out of choice forever anyway so no matter!

Potential side effects of temozolomide chemotherapy:

• Above 30% chance of nausea/vomiting, constipation, headaches and fatigue. Although there are now drugs available to deal with the nausea.
• A 10-29% chance of having an impacted immune system through a reduced white blood cell count. My white blood cell count should be tested regularly once the treatment starts to understand how impacted it is. 

The side effects of temozolomide should take about one month to recover from once I finish my treatment. This means that it should take me just over nine months to get through and recover from my treatment, so assuming it starts at the beginning of July I should be free from the end of March 2021 (block out your diaries now). But if I am lucky (and we all know I am!) and we find that my immune system isn’t affected, I may be able to live a relatively normal non-shielded life and see people throughout, assuming of course I am not wiped out by other symptoms such as fatigue. We will just need to wait and see.

I will be receiving an MRI scan every six weeks going forward to understand how effective the treatment is, and to track the tumour’s growth/shrinkage which should help to better inform my life expectancy in 2021 once chemo is over.  

The above is all very factual but it helps for me to get it all down to process in my head what the next 9 months will look like. Of course it is important to say that everything mentioned is based on averages and every patient’s individual experience can be different. But all I can do is keep smiling and positive to get through, whatever my personal treatment journey is, as best as I can! As I said in the previous post I feel lucky that this chemo experience should be far less impactful than what I experienced when I was nine years old. Having that baseline helps me to once again realise this isn’t as bad as it could be. A thought keeps entering my head in that I would far prefer this to happen to me rather than one of my friends or family, as I just feel like I am set-up mentally to get through this!

To reflect on this all, despite getting very much the worst case final diagnosis, it only confirmed the prognosis given to me by Dr Alex three weeks earlier after the first MRI. I had had this in my mind for a good period of time. As such it really didn’t come as any sort of shock when Dr Francis shared the news with Em and I. In fact it is good to have clarity on what the next nine months will look like so we can start to think about what we will do from April onwards. Off the top of my head I am thinking of dining nightly with friends at all the best vegan restaurants across London (in the vein of The Chicken Connoisseur), having all of the parties and travelling as much of the UK and the wider world as we can (COVID-19 allowing!). I now find myself in that small group of lucky people who can actually complete a bucket list while in the prime of life and with no dependents holding me back! The full bucket list will no doubt be a whole blog post for the future, but if you have any must do experiences that need to go on my list, please make sure to let me know so I can start compiling!

As we leave we bump into nurse Hannah again who tells me about Dr Alex’s charity Brainbook, “Our goal is to improve public and patient understanding of neurological and neurosurgical diseases. We combine medical illustration, narrative film, and research to improve understanding and reduce anxiety.” They have some great videos that help to explain what I will be going through including this one narrated by Dr Alex that goes through the radiotherapy process…

Embryologist appointment

Hopping back a day, it is around 9am on Thursday 11th June and I receive a call from Dr Hunter, Senior Embryologist at St Barts. Dr Hunter explained that my appointment with her department would be at 9am the following morning and goes over what I should expect the following day – to sign a whole load of consent forms and drop off an at-home created fresh sample within one hour of production. It is in this moment my whole world shatters… ‘My imagined experience of sitting in a small room with only a range of well thumbed magazines for company was not to be, I realise the brilliant anecdote has slipped through my fingers’. 

Instead I am shaken back to life by Dr Hunter asking a question I wasn’t expecting, “when did you last ejaculate?”. I suppose I need to get used (again) to being asked these questions about all my coming and goings, pardon the phrase. My answer was outside of the acceptable window as, ideally I would have last “cleaned the pipes” (Dr Hunter’s words) between 2-5 days before producing the sample. However, if I did the deed as soon as our call ended, 24 hours is just about on the low end of what is acceptable. It was then a slight problem that I was 22 hours out at that point – I would need to spring to attention immediately! I will remind you here that I was working as normal on Thursday and coming off the call with Dr Hunter presented me with only a 15 minute window, before a scheduled video call at 10am! There really is nothing like a bit of time pressure to turn something that is normally so easy and enjoyable into almost a chorish experience. But, rest assured I was able to step up to the plate and knock it out of the park before starting the call!

Roll forward to 8am on Friday morning and we have the lovely Steph Bancroft waiting in her car outside our to give us a lift to St Barts. Given the 60 minute window from deposit to hospital, inside the flat I am psyching myself up to try and time this deposit perfectly…. But just as I am getting the target in sight I realise I haven’t got the sterilised container with me! Rushing around the flat to find it and then fiddling to get the lid off was quite deflating in the moment but I was able to eventually produce with almost perfect accuracy (this bit is important for later). It was strange jumping in the car with Steph and Em straight away afterwards carrying the sample in my bag, I felt the need to disclose immediately rather than smuggling my illicit cargo in silence and it goes to show that I wouldn’t make a good drug mule crossing an international border!

Now masked up for my arrival at the clinic, I complete the COVID-19 symptom checklist followed by a temperature reading before they let me in to see Dr Hunter, her colleague taking my sample away immediately to start the tests. Dr Hunter explains that they will be deep freezing the sample then defrosting about a quarter of it, to test how my little guys act once they have been through the full process and that they would be looking for two things: the sperm count and the motility (movement), to give them an idea of whether they think they little guys will be up to the job. Will they thaw out like Captain America, or those old petit pois that I forgot about at the back of the freezer drawer…? 

Dr Hunter then takes me through all of the forms, starting by asking me if there was any spillage of the sample, I now shamefully admit I may have not caught every last drop. Dr Hunter presses me on it to think exactly which part was missed, thankfully it was from the end as it turns out the first shot contains the majority of the gang. As we go through the forms I realise I am giving Em full control of my swimmers in the event of my death or becoming mentally incapable. Can you trust her to not unleash an army of little Dave’s on the world to destroy society? 

Not even an hour after leaving the clinic I have another call from Dr Hunter to share some great news; they have already completed the tests and found my little swimmers look like they should to be up for the task, of course this doesn’t guarantee success (if we choose to go down that path) but there should be enough remaining in the sample for up to 10 rounds of IVF should we so wish to give it a go! I will admit it had always been a worry of mine that my chemo treatment when I was nine may have left me infertile, so this was a big relief for me! 

It really was quite a morning with all this news, I guess I still need to get used to this phase of life where it will become the norm. 

Full weekend

Getting home I start to prepare for potentially my last social weekend for nine months. I start it all off by taking Andy, Matt, Ryan and Piers through their first ever Dungeon and Dragons adventure with me stepping up as Dungeon Master (DM). I would like to think they enjoyed it despite me killing them all off before they were able to transform the magic sheep back into his normal form. I was then able to get in over 12,000 steps before 9am on Saturday while speaking to some friends in other timezones; having Cesca nine hours ahead in Australia  works a treat for my early mornings, with Helle one hour ahead in Oslo and Rich just being an early riser down in Southampton. I was well socialised before I had even seen anyone face to face. Alex and Pip, then Murray, Joe, Lewis, Palmer and Dan, and finally G and Ella, all visiting in person made for a very busy day! Sunday was even more hectic with a morning session with Joe and Collette followed by most of Northern Soul making the journey to our flat including Nick, Jess, Sam and Jamie who all drove down from the north for the day to see me, along with the London based Woolie, Sedge, Claudia, Liv, Jack, Han and Jim. Followed by a visit from Engen and Ayse, Engen having put his brain tumour into remission two years ago. It was great to speak to him properly to listen to his learnings from the experience. Finally we ended the day with a visit from Ryan, Abi, Piers and Sarah. 

It was brilliant to see as many people as possible ahead of my treatment, and I am so grateful that everyone made the effort to come and see me! It again makes me so appreciative of my great life, to have so many supportive friends in it!

Next steps

I have now had contact from the Royal Marsden and will be having my first appointment with my new neuro-oncologist Dr Liam Welsh on Tuesday 23rd June. Em and I are making the move to Chipstead today (Sunday 21st June). The flat has been emptied as best we can as we plan to use the opportunity of our flat being unoccupied to get some work done with a new kitchen being fitted, the flooring replaced and the spare room being redecorated. This has already presented us with some problems as I messed up the measurement for our new fridge that arrived on Thursday which called for Em to take on an unplanned demolition job to get it into the kitchen!

I do hope that we are able to have visitors during our stay in Chipstead but as I mentioned above this will be dependent on how I react to the treatment. But if I do have to shield for the next few months there are far worse places to be so really can’t complain too much. Do please let me know if you want the address!

Time

I have been finding myself listening to a lot of music again since coming out of hospital, mostly as I am still in love with my new headphones, and have been listening to the new album Love, Death and Dancing by Jack Garratt on repeat. I was lucky enough to see him play two intimate gigs over winter, so I was already hyped for the release.

There are a few songs in particular that are really resonating with me and have found a greater meaning given my new situation. The electric opening track, Time, speaks of Time being on your side. This may seem to some like a cruel taunt given my situation but I have found it focuses me on making the most of what I have left while at the same time making me want to dance around the flat. The fourth song Get In My Way has me continuing the feeling of invincibility that I had buzzing around post surgery, as I so firmly have the belief that we will make the very best of whatever we are up against over the next few years. Whatever the challenge is; we will be laughing, smiling and dancing the whole time!

Thank you

Another list of thank you’s!

• The London Lego set from Hannah and Cesca
• The magic set from Jasper
• The Rachel Ama vegan cookbook from Mecia and Kieran
• Homemade cookies from Alex
• Neils Yard cookbook from Sam
• Dates from Nadia 
• The “special” tea, sunflowers and Big Moon baking set from Joe and Claire
• Man Utd DVDs from Murray
• Pamper gifts for Em from G
• Vegan treats from Ella
• Date slices from G 
• DAVE cookies from Hannah & Jim 
• Road bike turbo and Zwift subscription from Palmer and Dan
• Call of Duty swag from Annette and Kev (this one made me laugh)
• A huge box of vegan goodies from Liv, Joe, Sophie, Will,  Ella, Justin, Rosie, G, Cam, Ben, Phil, Cat, Chris and Danny
• The vegan care package and tracksuit bottoms from Hana and Jamie (decorated so beautifully!)
• The homemade vegan pesto from Alison
• The banging salads from Woolie (these were incredible, photos below)
• The date slice re-up from Sedge and Claudia and the Mindful Chef Box (excellent vegan meals)