Part 4 – Moving south, preparing for chemo-radiation and the revised final diagnosis

Where I left you last, Em and I were just getting ready to relocate down to her sister’s house in Chipstead, ahead of changing hospitals to the Royal Marsden in Sutton. The move was straightforward (for me anyway) as Em had condensed enough of our belongings to fit into two car loads. My new summer style of jogging bottoms, shorts and hoodies, thankfully pack down into a small bag. 

I will admit I was hesitant about leaving our own flat behind but after a few days of being welcomed by Orla, Jim and baby Erin, I felt fully at home. Having a spacious house with a garden, especially with the sun shining as it has for the past few weeks, has been great. It has been amazing being able to get out to the countryside in less than ten minutes to have a walk in a wood. 

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My health has continued to improve as my strength seems to have fully returned and I am now back running again. Having said that my first attempt at playing darts had me struggling to even hit the board so there is little-to-zero chance of me hearing one huuuuuuuuundreed and eiiiiighty any time soon. While it is clear I am not yet quite back to “normal” my left pec is showing signs of re-emerging which means it won’t be long until I am beach body ready once again! 

First appointment at The Royal Marsden

A new hospital means a new doctor so I am now in the care of Dr Liam Welsh who so far has proved very open about discussing all details of my case.  

The first appointment with Dr Welsh on Tuesday 23rd June was also an introduction to my new key worker, Macmillan neuro-oncology clinical nurse specialist Alison Corbett who will be supporting me throughout my time at the Royal Marsden. Just as at St Barts, I was lucky enough to have Em along with me for support. This first meeting was to outline the treatment – which was just as was suggested by Dr Francis – six weeks of chemoradiation, followed by a month of recovery, before another six months of chemo. We then focused on radiotherapy, with the conversation on chemo being saved for another appointment the following week. I did get a good sense that I was in a great place to receive my care for the next part of my journey, we spoke for well over an hour as we had a lot of questions, but didn’t feel rushed at all or hurried to leave.

The mask fitting 

After speaking to Dr Welsh and nurse Corbett I was off to have my radiotherapy mask created down in the MRI department. The process was just as the video in my previous blog showed, with a heated holey plastic sheet placed over my head and pressed into the shape of my face. This happened over the course of a few minutes as the temperature of the mask dropped and the shape became rigid. It was almost like a face massage from the radiographer who was smoothing the sheet over me. Not one for the claustrophobic amongst us but I quite enjoyed it! The mask will then be kept by the radiographers for the next six weeks. I was told that I will be able to take it home with me once the treatment is over! Apparently a lot of other patients have decorated their masks to turn it into a piece of art as a reminder of what they have overcome. Armed with my C in GCSE Art I have no doubt I will be able to turn the mask into something of beauty! 

A revised diagnosis 

So the following week on Tuesday 30th Em and I were back again to the clinic, expecting to talk about the chemo but instead Dr Welsh comes in to say he has some news about the diagnosis. Initially, and assuming it must be good news, I was delighted, but as he spent the next five minutes giving the context for why it had changed I found myself worrying. I crossed my fingers under my note pad in the hope that it was positive…

Dr Welsh explained that after seeing inconsistencies in the initial diagnosis, St Barts has sent the tumor biopsy sample to University College London where they completed another methylation classifier (DNA analysis test) developed at the German Cancer Research Center (DKFZ) and Heidelberg University in Germany. The inconsistencies being, that while the IDH1 gene is present in the tumor the other gene classifiers were ambiguous and not normally seen in a glioblastoma. 

What this new test has now found with a 90% confidence that I likely have anaplastic ependymoma which is classed as a WHO grade 3 tumor. This was further confirmed as the researchers once again looked at the sample under the microscope and with this new context they realised the inconsistencies now made sense. 

Just as you may be doing now, on hearing that the diagnosis had changed from a grade 4 to a grade 3 my heart jumped. It is worth noting that ependymoma’s maximum grade is also grade 3, with no grade 4. Dr Welsh went on to explain it is difficult to grade ependymomas in adults, partly because of their rarity in adults as they most commonly occur in children. A stat that I found, stated around 200 cases a year are diagnosed in total in the US, so in a country of 328 million this means the chance of this type of tumor occurring is 1 in 1.6 million. This means I finally have proof of what we all already know: I am one in a million! 

The rarity of this tumor type means it is difficult to define a prognosis for life expectancy (just as Dr Francis at St Barts was coy sharing exact details on life expectancy), so all Dr Welsh would say was that he expected my time to be double compared to the glioblastoma diagnosis(12-18 months). After reading some studies myself, which have analysed cases worldwide over the past few decades, over half of patients diagnosed with a grade III anaplastic ependymoma survived over five years. This is definitely a big improvement on where I was a couple of weeks ago!

Dr Welsh then explained that this type of cancer doesn’t normally respond as well to chemo in adults, however it should respond better to radiotherapy. This means that I will no longer be undergoing chemotherapy as part of my initial treatment. This is a huge positive as it means I won’t need to shield once radiotherapy has finished, and my treatment should be over by mid August 2020 instead of Spring 2021! 

Recurrence likely 

To sour the mood slightly, whilst having the anaplastic ependymoma is better for my overall life expectancy, it doesn’t mean that those years will be without issue. It is likely that the cancer will return to a part of my brain or spine. Again Dr Welsh didn’t share too many details on this, apart from a story of one of his anaplastic ependymoma patients who had had survived for over 20 years and was still going strong but that in that time had had 12 tumours that were each dealt with either by further surgery, radiotherapy or heavy courses of chemo. My research had found that the average time to first recurrence for my type of cancer was 18 months, and then subsequent recurrences was 12 months. It is clear then that the fight won’t be any easier with the revised diagnosis.

An MRI of my spine 

Dr Welsh noted that because this tumor is normally associated with cancer both in the brain and the spine, despite already having a CT scan of my abdomen, I needed another MRI of my body to confirm that the cancer wasn’t also present in my vertebrate. This resulted in a trip to Royal Marsden in Chelsea on Friday 3rd July to their mobile MRI unit, to this time hear a tinny Meat Loaf sing Bat Out Of Hell. This brought on my first case of ‘scanxiety’, a phrase I first heard on the Brain Cancer Podcast, to describe the wait after a scan before the doctor shares the news of whether the cancer has grown or spread. Thankfully I didn’t have long to wait as I had a call from Dr Welsh at 8pm that evening to confirm that there was no cancer present in the spine. I hadn’t been too worried about this as a possibility but when you get this good news you can’t help be chuffed as I said thank you repeatedly to him, both for sharing the good news and doing so, so late in the evening. 

Celebrating good news 

The clear MRI results, coupled with the news from earlier in the week called for a celebration, so I deviated from my diet (vegan, no refined sugar, no alcohol and no processed foods) for the first time as we had an Indian takeaway for dinner – a fish curry and a large glass of red wine to wash it down with (thanks for the tip from the anti-cancer book!). The slight hangover the next morning once again confirmed that I am still a light-weight.

To say that all of this is mind boggling to me would put it mildly. I have spent that last month processing the worst case grade IV glioblastoma diagnosis and getting it clear in my head that I should be expecting to only survive another eighteen months, especially as it was finally starting to sink in what it actually meant. 

The previous night to being told the new diagnosis, Em and I had been continuing our journey through all of the Marvel superhero movies in watching Guardians of the Galaxy II. After finishing the film, Em Googled the Marvels films that were stated for release in the coming years. It was only when I realised that I may not be around to see them all that I finally had a cry with Em about everything. Of course while I am a self-proclaimed nerd, I don’t think this is about my love of the Marvel films, but more that this was the final drop of water that finally broke the dam walls of my emotion. To then be told that that it was ONLY a grade III and that I could have more than five years left in me, I can tell you that it hasn’t really sunk in. 

This may seem mad and whilst there clearly are downsides to having only eighteen months left to live, it had put me on a high when I thought about life. All of the normal stresses no longer mattered to me. So to now have to readjust to thinking about life in the semi-longer term I felt a little deflated at first. Em has reminded me that while this may be uncertain for me it is a good thing for her and my family, (although I am struggling to see how having to deal with me for even longer isn’t seen as a curse), thinking about this does help me to focus on the positive and over the past few days I have realised more and more, that once again I am incredibly lucky. Both Dr Welsh and nurse Corbett mentioned how rare it was for them to be able to give good news as they did with me. So, as I reflect, I am reminded that since being told the worst news about the tumour the day before my surgery, everything has gone as well as I could have hoped and that now continues!

I know I still need more time to get this all straight in my head but the next thing for me to get through is the radiotherapy which starts today (Monday 6th July) as I assume the six weeks will give me the time to let it all sink in again. 

Now the for the thank yous:

• Harry Potter Lego set from Jess and Sam
• Returning our package and the special delivery from Boyney and Zach
• The camera and scrap-book from Shannon, Holly Macy, Chrissie, David and Sophie
• The nutty hummus kit from Lizzie Davidson
• Rick for liaising with the painter