A loving wife's tale of my husband's astrocytoma diagnosis & treatment
Today is the day that we re-run the fun. Mr Corns’ words, not mine.
The girls have got off to school ok (I know as I have received about 40 texts already). Fergus & I are on ward 27 LGI going through various pre-op procedures & paperwork.
The all-important arrow has been drawn & we are ready to go. Gulp.
Sunday 20th January 2019
The hospital bag is packed; the slippers have been found; I have change for the parking metre; and all the arrangements for Kate to take care of the girls are made. I’ve been out to buy last minute food-tech ingredients that were announced by my offspring at bedtime (& found myself grinding cloves with the end of a rolling pin at 10:30pm, but that’s just the life of a mum, isn’t it?) School have agreed once again that the girls can be excused from homework for a week, which will really help as the evenings will be filled with trips to & from the hospital.
It’s been a good weekend together & we’ve fitted a lot in: the Parkrun; the Pantomime; a curry in Bradford & a trip to Mod Pizza together. Considering that Fergus has been asleep for about 3 hours during the day each day (as well as all night) I think we’ve done pretty well. Having said that, there is definitely some nervous energy in the air. There’s just not enough of Fergus to go around: the girls squabble over who gets to sit next to him at the pantomime, and they find every excuse to come downstairs after bedtime and give him another hug. I even find Evie sitting on the stairs listening to us chat & play a board game after she’s been sent up twice. We relent & let her sit with us for a few more minutes, reassuring her that all is well.
Thankfully, Cat has fully taken over the house-building project & has an army of helpers lined up to make sure everything runs smoothly while I’m out of the picture for a while. Thank you everyone. I find myself incapable of the simplest of decisions. A task that should have been a real pleasure – choosing a new kitchen (for the first time in my life I get to choose my own kitchen!) is reduced to a series of decisions that I find I am simply not interested in at all. Why would I want a bigger kitchen when in a few years time I may find myself rattling around the place all alone?
I’m told I should try to think positively by family and friends. I’m told my Mr Corns that we should be braced for the worst. I flit between the two. Prepare for the worst but hope for the best? It’s not an easy balance to strike.
For now, I keep moving forwards (like a shark). One day at a time. And tomorrow is a big one.
No appointments at LGI today. However, we wouldn’t want to pass a whole day without a visit, would we? Luckily, Fergus obliged by having multiple focal seizures from 11am onwards, so we cancelled our plans for lunch with friends & had a day out at A&E instead.
For once, it was not late at night or over the weekend, and A&E was the calmest I’ve ever seen it. We were looked after by had a very pragmatic A&E doctor, who respected our request to please get Fergus back home rather than having to have an overnight admission. He went to great lengths to ensure we had the right treatment & some take home medication to ensure that I can manage any further seizures Fergus has between now & the craniotomy on Monday, enabling us to be at home together.
I’ve also spoken to our specialist nurse, and she has reassured us that this will have no impact on the planned operation for Monday, which is a relief.
There was a flask of soup waiting on the doorstep when we got home (thank you Cat), as well as the offer of taking on the role of project manager for the on-going building work back in our home (double thank you Cat). I’m happy to hand this over as I am going to need all my focus on the family next week.
For now, Fergus is tucked up in bed upstairs; I’m thankful that he’s home so he can rest up & we can all be together for the weekend.
We have just returned from Fergus’s pre-op physio session with the lovely Seonaid at LGI. The purpose of the visit is to plan the physio tasks that Fergus will perform during the operation (yes, he will be awake) and to understand how things are today, so we know what we are aiming for post-op. The physios will be present during the operation, ensuring that the surgeon, Mr Corns, is able to remove tumour right up to the edge of where Fergus’s funtioning cells begin. As a team, they work to identify this by numbing the section first, then checking Ferg’s responses, before it is chopped away.
The aim this time is to push the boundries a bit, as we now know that this tumour is growing rapidly: the more that can be removed, the better. This carries risks of course, but as Ferg has ‘plasticity’ (the ability to move function around in the brain) Fergus has agreed to support this decision, even if it means some hard work afterwards to regain his physical capability. I take my hat off to him for his bravery & determination.
It’s an upbeat meeting, with a lot of positivity from the LGI team as always. I’m touched that Seonaid takes time to let us know that she understands what’s going on below the surface. There’s a real sense that the team care far more about Fergus’s outcomes than the boundries of their job roles.
It has been a terribly difficult week, and to be honest I am not sure that any of us can quite find the words to express how we are feeling. Not me, not Fergus, not the children, nor our close family & friends. I feel very similar to how I did back on 5th September when the bottom dropped out of my world on a Wednesday afternoon (the initial diagnosis). Shellshocked.
In any case, we have a new task in hand. Part of Seonaid’s charm is the lengths she will go to in order to find the right props to check out Ferg’s capabilities. This little fella is going to form one of the many tests and checks during the operation. You squeeze him & his belly infates, along with other more alarming growths on his back. Our task is to find a name for him before Monday. I’m sure our children will be happy to oblige!
Wednesday 16th January 2019
By now, we are such regulars at Mr Corns’ clinic that we have a welcoming committee. The 2 wonderful physiotherapists (Laura and Seonaid) who guided Fergus through his first operation are waiting for us on arrival. It’s great to see them again, although of course, in the nicest possible way, we wish it wasn’t necessary. They are keen to come into clinic & see the functional MRI scan results & to ensure we are clear about the plan for next week’s surgery.
It’s pretty busy in the clinic room with Seonaid the Physio, Gill the specialist nurse, myself & Fergus all poised to hear what Mr Corns has to say. As always, Mr Corns addresses Fergus & allows him to guide the dialogue. This time, Fergus has prepared a list of questions, and we are told that we have all the time in the world to make sure all the questions are answered.
We learn that Ferg’s tumour was 38mm in diameter back in August 2018 when it first showed up on the MRI scan. It is roughly spherical in shape on this scan. Despite being ‘de-bulked’ with 50%-70% of the tumour having been removed on September 17th 2018, the scan from 20th December 2018 shows the tumour as 40mm x 41mm. This rapid recurrence, along with the patches that are being highlighted by the dye, are the key indicators that this tumour is not behaving like a low-grade tumour. It’s pretty clear that this tumour is changing rapidly and is far from being what the team called ‘managed’.
We discuss the meaning of ‘diffuse’. Mr Corns reiterates that this is generally a term used to describe the grade 2 version of an astrocytoma, and that he is concerned that this tumour is not grade 2, it is likely to be a higher grade. However, in any case, both tumours are tricky to remove as the tumorous cells cluster around healthy neurons. He went on to describe how the brain then moves function out of these neurons once they become surrounded by tumour; like a row of houses where squatters move into the end house, so the residents move up the street; then the squatters move into the adjacent house, and the residents move up again etc. The problem is when you run out of road. Although the brain has about 30% ‘spare’ capacity, the situation is not sustainable.
On Monday, Fergus will be repeating exactly the same procedure as last time. The incision will be made along the line of the scar, only this time the ‘bone flap’ can be unscrewed to access the brain, making things very slightly simpler. Mr Corns explains that he will be removing everything he possibly can without affecting function.
We have questions about the possible need to for radiotherapy following surgery, and learn that we should expect this to start 6-8 weeks after surgery, and last for 6 weeks. The aim of radiotherapy is to try to get the tumour back under control. There is, we are reminded, no cure. Only treatments to try to keep Fergus alive for as long as possible.
We spend time looking at the functional MRI scan pictures. The positive news is that Ferg’s brain has done a pretty good job of moving function away from the squatters in a short space of time. Ferg asks if playing computer games that make him feel like a seizure onset is imminent will help. The answer is a resounding no; physiotherapy is the best way to speed this up! The functions that are closest to the tumour are proprioception in the right hand (ability to understand where the right hand is – this explains why Fergus keeps knocking drinks over) & sensory activations (e.g. ability to identify a letter that someone draws on your hand – I’ve not noticed any symptoms in Fergus of this).
Given the speed at which Ferg’s brain is rewiring and the new information we have about the speed that this tumour is growing, Mr Corns explains that he will be slightly more aggressive in his approach to removing tumorous tissue this time. It’s an approach we all agree on.
We finish up with a few final questions; a prescription for steroids to reduce swelling around the tumour; and an appointment with the physiotherapy team for tomorrow.
Circumstances may in many ways appear be against us, but we could not possibly ask for better care than we receive at LGI, and for that I am truly grateful.
Wednesday 9th January 2019
I leave work unexpectedly as I receive a phone call asking if we can into clinic today to review Fergus’s latest MRI scan results.
When I return home in a state of shock, I draft the following email, which I will send in the morning.
Updating the girls is heartbreak itself. There are no words.
Hello Team,
I hope you are all well this morning.
I’m sorry to tell you that I had some bad news yesterday about Fergus’s brain tumour.
In October, following his surgery, the diagnosis was given as a Grade 2 Diffuse Astrocytoma.
However, the latest scan is showing that the tumour is growing & is behaving like a Grade 3 Anaplastic Astrocytoma.
The difference is very significant in terms of the prognosis & how long Fergus is likely to live.
Grade 2 Astrocytomas grow slowly. Eventually they do transform to higher grade, but this can take many years (5-15 typically).
Grade 3 Astrocytomas are aggressive, invasive tumours. They become, in time, grade 4 Astrocytomas which get a special name all of their own – Glioblastoma, known as the ‘big bad wolf’ in the brain tumour world. This is not good news.
We don’t know for sure yet what’s going on, but the experts are suggesting that the initial diagnosis may have been incorrect & they are concerned.
The preferred route is to go back in & remove the area of the tumour that looks high grade on the scans. Then it can be examined & a definitive answer can be given about the grade of the tumour tissue. However, we first need to establish if this is possible without affecting Fergus’s quality of life.
A scan next week (most likely Thursday) will reveal which functions are likely to be affected, if any, by removal of this area. Then we can make a decision as to if surgery is viable. We hope that it is as this is the best course of action.
Fergus has been provisionally booked in for his second craniotomy (brain surgery to remove as much tumour as possible) for 21st January.
If surgery is not viable, he will need to have radiotherapy to try to slow down the growth of the tumour.
I’ve attached what I think is the best info leaflet if you would like to read any more on the subject.
I’m sharing all of this because I think it will be helpful for me if the people around me understand what is going on in my world. I am happy for you to forward this to anyone at all – it’s not a secret & actually the more people know, the better equipped they will be to support me when I’m in work.
For today, I am just going to focus on spending some time with Fergus. I can’t make any plans or predictions about if I’ll be working or not working & when. I love my job & want to be back in work, but the news is too raw for me to be able to focus on work right now.
Wednesday 17th October 2018
It’s full results day.
We expect that the tumour will be graded at 2, but we have yet to find out its name & genetic nature. These things have a massive impact on outlook & prognosis, so it’s a big day.
Mr Corns is in fine fettle as usual. I am poised with my giant notebook & pen, ready to absorb the pearls of his wisdom. We learn that Fergus has a Grade 2 Diffuse Astrocytoma Glioma with the IDH1 mutation. There is no known cure, but there are treatments which have been shown to extend life expectancy.
Diffuse is bad news; this means that the tumour does not have clearly defined edges & it highly unlikely that full removal of the tumour will ever be possible (as it is becoming embroiled with healthy brain tissue). The IDH1 mutation is better news; I later read up on how this mutation correlates with longer-term survival rates and how the latest research is showing indications that some types of treatment (chemoradiotherapy) have better outcomes when this gene is present.
It’s not clear if Astrocytoma is good or bad news. I don’t ask about this, but instead, ask the bigger question. What does this mean for Fergus’s prognosis?
Mr Corns explains that astrocytoma gliomas change over the course of time. At some point, this tumour will transform into a grade 3, and then a grade 4. The job of the neurosurgery team is to monitor the tumour closely & intervene again at the first sign of any progression. We should expect further surgery. The brain, Mr Corns explains, is extremely good at moving function away from the site of the tumour post-operation, and we may find that more tumour removal is possible by going through surgery again. Surgery is the best treatment; other treatments are regarded as more of a backup. We should, however, also expect both radiotherapy & chemotherapy to be part of Fergus’s future.
“I can’t tell you how long you are going to live,” caveats Mr Corns. He then goes on to explain that, if we are lucky, and if a 2nd operation is viable, Fergus could get 10 years before the tumour starts to transform. This 2nd operation should be expected in 2-3 years. Once transformation begins, we will be counting his future in much smaller numbers; this is when the radiotherapy & chemotherapy will come in.
Fergus’s treatment plan is called ‘watch & wait’. This involves 3-monthly MRI scans & appointments at a different, low grade, clinic. Mr Corns, it turns out, runs only the high grade clinic, so we will be transferred to a new consultant. A letter is dictated to our new consultant, asking for Fergus to be booked in for the first of these scans just before Christmas.
I’m sad to say goodbye to Mr Corns, and try to find the words to express my gratitude to him for all he has done for Fergus. My garbled ramblings are awkwardly inadequate, but I think he understands. He salutes me, “I am at your service.” No wonder he only has 5 star reviews online.
Sunday 14th October 2018
We have been visibly more relaxed over the last couple of weeks. Adjusting to the news that we are probably looking at low grade is a positive, but underneath it all, learning to let go of our long term future together is still raw and painful.
Life has returned to a ‘new kind of normal’ as we await the full results. Fergus is recovering well, and starting to become more independent. I am still off work, taking care of the whole family & coming to terms with our new future.
I return from our routine Sunday horse riding lessons (for the girls, not me!) in the usual flurry of mucky boots, hats, crops & chaos. There’s a noise from upstairs, I think I can hear Fergus. I go to the bottom of the stairs & he is standing at the top holding his right arm with his left and trying to speak to me – something’s wrong.
I race up the stairs & sit Fergus down on the bed. His right arm is shaking uncontrollably & his words are nonsense. I try to reassure him, it’s OK, I’m here. The girls gather round & I am trying to stay calm & explain to them that this is some kind of seizure. They later inform me I was anything but calm.
The 999 operative asks me if Fergus can raise both arms in the air. He can only raise one. Ask him to smile – is the smile even on both sides of his face? Er – no, definitely only on one side. Ask him to repeat, “The early bird catches the worm” – just shakes his head and points at his mouth, indicating he can’t sleep. I’ve heard of these tests somewhere – it’s how you check if someone is having a stroke.
While the ambulance is on its way, I call Kate, stating that I think Fergus is having a stroke. She races from across Leeds but as she already knows that she’s miles away, I also phone another friend who legs it over from the other side of Horsforth to hold the fort before Kate arrives. Unfortunately, I forget to tell her that we’ve had to move out & she arrives at ‘the scene from the blitz’ (our affectionate name for the location where our house used to be). It’s all a bit of a muddle, compounded by Fergus re-gaining the power of speech & repeatedly asking the kids to get his hoovers, and pointing at his feet. What does Daddy want?
Eventually, we find Daddy’s trainers which seems to do the trick, and Fergus & I are blue-lighted into LGI as Fergus’s symptoms start up again en route, and this time much more aggressively. He’s in a lot of pain with his arm spasms becoming increasingly violent & the muscles shredding themselves in protest.
We go straight into resus, where Ferg is given the maximum dose of Lorazepam before the seizure is brought under control. I spend the next hour or so trying to stop him from dropping his iphone on the floor as he is away with the fairies, garbling nonsense & insisting that he wants to surf the web. He can’t even hit the screen with his fingers but I let him try as it seems to comfort him.
It’s a long wait for a doctor as it’s a Sunday and things are pretty busy. When we do see the doctor, he openly admits that he doesn’t know what to do with Fergus as he has no neurological training. He does, however, arrange for Ferg to have a CT scan and makes the right phone calls to get the advice he needs. It just means a fair bit of waiting.
I call & text the appropriate people, including Ferg’s specialist nurse (leaving a voicemail) as well as family & close friends. I check on Kate & the girls – they are having fun & all is well at home.
Finally, around 7 hours or so later, we are informed that Fergus has not had a stroke, and that this was almost certainly a focal seizure. It’s not something either of us had heard of before. Basically, it’s a seizure that occurs while awake, that affects one part of the body (so for Fergus his right hand/arm).
They have contacted Fergus’s neurology team, who have asked for him to stay in overnight so that one of them can come and see Fergus in the morning & arrange for him to go onto anti-seizure medication. I help get Fergus settled on Ward 1 (part of A&E – a kind of holding area, a bit different to the usual wards) and nip to Tesco for a toothbrush & some snacks.
A quick turnaround at home for me, with Kate stepping in again to get the children off to school, and I’m back at LGI just in time to hear the neurologist explaining to Fergus what the plan will be. Fergus is being started on some anti-seizure medicines, and will need to be seen in clinic to monitor how this is working, with the likelihood that the dose will increase over time. It’s levetiracetam, more commonly referred to by the brand name Kepra (can’t think why).
During an astonishingly long wait for the pharmacy meds to arrive, we get another visitor – one of the specialist nurses has picked up the message I left for Gill & has come to see how we are. She provides reassurance that it’s completely normal to experience these types of seizures post-op, and advises we should expect and plan for more. Gill then phones me back too, and asks if the girls saw what happened. Oh good, she says, it’s better for them to see it when there’s an adult there first, now they’ll know what to do if they are on their own with him when it happens. She has a good point.
So, expect more of the same. And new meds for life. That wasn’t part of our plan.
Wednesday 26th September 2018
We get a phone call in the morning asking us to come & see Mr Corns in clinic that afternoon. We also get a phone call from our builder, asking for the bathroom plans so that the plumber can do the ‘first cut’ – whatever that is. We haven’t chosen a bathroom, or thought about the layout. I agree that we will go & choose one this morning.
In a trance like state, we select tiles, taps & flooring. I have no memory of what we chose, except that Fergus wanted an extra long bath, which we bought (he is rather tall).
We then go out for lunch, trying to enjoy the last few hour of not knowing bad news. After all, when have you ever been called into hospital at such short notice for good news?
We see Mr Corns in clinic. He wants to check how Fergus’s head is healing and to see how we are, as well as to discuss the preliminary biopsy results. Amazingly, he has called us in because he knows how anxious we are, and wants to share the good news that they have only found grade 2 tissue. I feel like we have won the lottery. I mean, having a brain tumour is always bad news, but things could be so, so much worse.
It’s not all good news though. The post-op scan is showing that perhaps only about 50% of the tumour was removed after all. However, there’s a lot of swelling so no one can be too sure about what is going on. Also, just because they have only found grade 2 tissue does not guarantee that it’s all grade 2 – it’s entirely possible that higher grade material is there undetected. I’m learning to live with uncertainty.
Mr Corns offers to save us a trip to the GP & remove all 48 staples in Fergus’s head. I’m impressed by the speed & ease with which he completes this task, and Ferg is delighted. He can wash his hair at last!
When we get home, Ferg has a long soak in the bath & he asks me to wash his hair for him. There’s a lot of dried blood matted into his hair still, and it’s hard to work out which bits can come out & which are an integral part of the healing scabs that cover the incision. I work carefully, and centimetre at a time, gently cleaning around the site of the wound. That’s when I find a stray staple that’s been left behind. Not to worry, I declare, it looked like a doddle to remove and we still have the staple remover that we were issued with when we left hospital. I mean, it’s not rocket science, is it?
It turns out it’s not quite as easy as it looks. Perhaps this is due in part to the celebratory glass of wine we had on the way home from the hospital. Fergus groans in agony as I clumsily attempt the removal. After a couple of failed attempts involving some unrepeatable words from Fergus, I use YouTube for guidance. It’s actually pretty informative, and once I’ve managed to get the staple the right way round again, I take it out without too much trouble. Sorry about that Fergus.
Triplets, Travels & Now A Tumour 