***WARNING - this is a very long and heavy read. Tea/coffee and chair advisable *****
"No need to reply" is perhaps the most common phrase we get in text messages at the moment. It is one of the kindest things to do, to send love without expectation. We get a lot of messages and there is rarely time, it seems, to write any kind of considered response. When things were more hopeful we enjoyed writing these blog posts, helping people understand how the system was working. Although cancer treatment can be punishing, it is offered with a view to improve the situation, to offer the possibility of an improved outcome. But when the situation is less hopeful, the future doubtful and the timeline uncertain then there is a tendency for the immediate family to close in, and the quality and frequency of communication suffers as a result. The lockdown situation only further added to this. Over the last few weeks our horizons have become rather limited. At so many points, usually around 9.30pm, when the house is quiet and all are asleep, I think I must write a blog to update where we are. But that is as far as I get.
There are some bits of this story we have tried to convey face to face, or at least over the phone. But the reality of an all this has meant it just isn't possible. If this is the first news you’ve read since the last blog in May, then I am sorry that we hadn't been able to speak to you. Some aspects of this story have got easier to tell, but it remains, and always will remain, bloody hard.
The very early posts in this brain blog focused on treatment. It was a story of a young woman, embarking on an exciting academic career, having to "step off track" whilst she worked on trying to rid her brain of a most unwelcome tumour. The tumour was large, slow growing and relatively accessible (or operable for a surgeon). It resembled a low grade, slow growing tumour. There was some optimism among the medical team. The operation was pretty successful. Unlike a great many brain tumour patients there wasn't a "I'm sorry we can't operate" or "you'll have to just manage this with massive doses of steroids". The treatment Annie received allowed her to return to her PhD a few months later. For the years that followed the operation and treatment in 2012 she achieved some incredible things (many of which I have written about previously).
Scanxiety
Brain tumour patients talk of "scanxiety" that is the anxiety in the days running up to a 3 or 6 monthly MRI scan. After a session in the MRI machine we would sit in “waiting area 1” to be called to a consultation room to speak to the oncologist. "I have had a quick look at the scans and it is looking pretty good", "no change", "small change but nothing to worry about", or "I'm sorry". Whether the news good or bad, the one thing we never spoke about was prognosis. Had we asked, the doctor would have been straight with us. But all along we shared the view that somebody telling you that the chances of surviving this beyond “x years is y” can almost become self-fulfilling. Such knowledge closes doors. shuts down hope.
In July 2017 instead of getting the 5 year “all clear”, we got the devastating news that the remaining bit of the tumour, the bit they couldn't remove in 2012, had started to grow again. Our oncologist was visibly upset by the news as he broke it to us. Perhaps this was the chance to talk about prognosis. But again, the focus soon shifted to action. Over the next 2 years came three further rounds of chemotherapy. It seemed surgery was not an option and radiotherapy unsuitable. For a few months the tablet based chemotherapy (known as TMZ) was holding it. We almost got back to normal, but it was short lived.
In June 2019 the decision was to look again at operating. For us operation number 2 was about removing as much of the tumour as possible. It was about reducing the size of the job for any subsequent chemo. The operation seemed to go well. Annie was home the next day. Given that TMZ had stopped being effective we switched to more traditional chemo (called PCV). While we saw the operation as a form of treatment, for the MDT (Multidisciplinary team) it was primarily one of diagnosis. For the first time since 2012 they could be certain what the tumour had become.
The story we told on this blog in summer of 2019 was one about the treatment - how it seemed to work at first but it was playing havoc with blood counts. A reduced dose seemed hopeful but it didn't hold for long. What we didn't share on here back in July last year was the news of what would be the first of two prognosis conversations.
Conversation 1
A week after the operation in July 2019 the surgeon called us to his office. He showed us the before and after scans. He had been able to remove a great deal of the regrowth. But he was straight with us - the pathologist had confirmed the tumour had advanced to a grade 4. There is no higher grade in cancer. Furthermore it was a most insidious form of tumour called a glioblastoma. For some brain tumour patients, the first point they find out they have a tumour is news is it a grade 4 glioblastoma (or GBM4). Our trajectory was different - one of a progression over several years and with almost 5 years in remission. The surgeon advised us to speak to the oncologist about next steps, but when we were ready. We took the opportunity of seeking him the same day. For some inexplicable reason we rushed a breakneck speed across the city to the cancer hospital. We were squeezed into the morning clinic list. It was only here that Annie asked the P question, the question of prognosis.
-How long have I got?
-Worst case 6 months Best case 3 years - but I will do everything I can.
This information, calmly delivered, from a doctor of over 40 years of experience, Hit. Us. Like. A. Train. After a few hours Annie dealt with it in the way she has all the way through - it is not 3 years, but 3 plus years. She would focus on the plus. She didn't go as far as some in this situation would and google GBM4 until she found a black swan - like the bloke who has had it for 25 years and wrote a best-selling kindle book. She just got on with it. I followed her lead.
Running out of options
The chemo that followed this news held for a while but when blood counts started crashing, it felt like we needed to consider all options. At this point brain tumour patients and their partners start bargaining, and doing radical things like moving to Germany to get on a drug trial, or seeking to pay through the nose for treatment not available on the NHS or buying cannabis oil from their hairdresser. We went as far as travelling to London to get a second opinion from a leading oncologist and a top brain surgeon. Both agreed the treatment we were receiving was equal to theirs, to not give up hope and to keep going. Had we shared the prognosis news more widely I'm sure somebody would be contacting us with an idea of injecting turmeric every morning or some such. But the brutal truth about GBM4 is there is very little can be done. In part this is not helped that it seems to affect people very differently.
It was at this point in the summer 2019 I joined a forum for partners of brain tumour patients. What I wasn't prepared for was the large proportion of these to be partners of specifically GBM4 patients. Inevitably those that post most on such a forum are the most lonely, the most extrovert, most vulnerable, most isolated, most anxious and they share everything, sparing no details right up to, and in some cases the point of death and the weeks following. Instead of finding fellow travellers, I found trauma. After 6 years in a bubble of determined optimism I had an insight into the bubbles of others. Not only was it horrific, it also presented a host of possible pathways for what our future would hold. After a couple of days I decided to quietly exit for the time being.
Back on the table
Springtime 2020 brought the somewhat surprise news that a third operation was to be offered. If Annie was willing, they took the view a further "debulking" of the tumour would buy us more time. After said operation radiotherapy was also back on the cards. We said yes. A week on from the third operation, the surgeon offered a 4th. There was more he could get. We consented. It all seemed to be about reducing the levels of follow-up radiotherapy. As you probably know from previous posts this fourth operation didn't go as well. Upon waking Annie in recovery they realised she had suffered a stroke. Further assessment showed a near total loss of movement in her left arm and left leg, She spent 2 weeks in hospital at the height of the original lockdown. All visiting cancelled. During this time physio commenced rehab work, developing methods to keep her mobile and maintaining core strength and stability. Then one morning my phone rang, it was the surgeon. Can you come down to the hospital this morning? I'd like to speak to you both together.
Conversation 2
I got the ward before him. The nurse turned me away and sent me to a small family room. The surgeon said a few words to the charge nurse and I was allowed in. Mask and visor, gloves, apron. At first I stood 2 metres away from Annie. He ordered me to sit next to her. Curiously he had no PPE. It was only a day or so later that I realised why. This was prognosis chat 2 and this time he was instigating it.
-I'm sorry, we had hoped to buy you more time but it is a matter of weeks not months.
The tumour it seemed had spread to an area at the back of the brain in the spaces called the ventricles. He kept it brief, allowed us to ask questions and then left us alone for a few minutes. A nurse interrupted us and instructed that I was not to leave. The chief nurse was on the ward. After a few minutes more she beckoned me out to the corridor - walking 5 paces in front, checking around corners, suggesting on two occasions I hang back, or step into a doorway, eventually we safely reached the exit door and I was ejected into the atrium. The whole process was so farcical it distracted me from the enormity of the news. Later, at my sister's house it sank in.
All our energy became invested in getting Annie home - out and away from Covid wards and to be with her family, including her soon to be 3 year old son. Staff at the hospital, the commissioners of continuing health care, Macmillan, district nurses and city council pulled out all the stops for us. Joe's birthday was the target date and she was out and home with a day to spare.
Once the subsequent infected wound site was sorted we have eventually found a rhythm. To onlookers it is a busy house of coming and going. Joe's return to nursery 3 days a week brought much needed structure to us all. Districts nurses once a week, Macmillan nurse once a week, a physio and consultant when required, carers 4 times a day. Every day is different but a typical day for Annie over recent weeks has become breakfast and medications at 8, carers at 9:30, a visit from a friend or a medical person at 11. lunch at 1pm, Nap from 2-4. Tea at 5.30, cartoons with Joe, medications, ready for bed 8pm, lights out at 9.
Steroids mean appetite is healthy. Eating is very slow. Meals can last 2 hours. A trip to the toilet can take 30 minutes. A shower takes 2 hours. Carers can call anytime between 9-11. 12:30-2, 3:45-5, 7 and 8:30pm. Although welcome and needed, such calls mean like banana man we are ever alert for the call the action, anticipating a conversation to be interrupted. or the conversation to be about the carers themselves – “are the carers here, when will they be here? I wonder who it will be today”?. This leaves 90 minutes a day. Most safely 11-12:30 when we can be pretty certain that Annie will be in good form and nobody will interrupt. At first these 90 minute slots were being auto-populated by medical appointments - of the "same time next week variety". We went full circle. Tried to move to phone call follow ups, go for whole days without any visits. It has been a period of experimentation and failure. There is no typical week - but here is a kind of model that is emerging for the 11am slots.
Monday - Macmillan nurse- this is blend of family and individual therapy, care coordination and pain management/medication review. Our nurse is a GP, palliative nurse, therapist and all round fixer.
Tuesday - District nurse - this is more about physical examination - ensuring skin, blood sugar are in good order.
Wednesday - Bath day - hair wash - bath, blow dry, a shower or a bath is physically exhausting but essential for wellbeing.
Thursday - A trip out. Joe is not at nursery today. this is a day to get out to a park or beyond. We’ve kitted out the van to carry a wheelchair - so can travel. We even had a day at Monkey Forest in Stoke.
Friday - VIP - Fridays have become a day for a surprise friend to visit.
Saturday - this has become about the three of us. A time for Joe to remember what life was like before the stroke and everything that has come with it. After the breakfast care visit - the lunch and teatime calls are cancelled. It is a day for doing relatively little, recharging batteries.
Sunday - a day for Annie to be with her close family - reading a book with her mum, looking at photo albums with her dad, discussing PhD progress with her brother. It is a day for me to take Joe out for a visit to his cousin's or to some form of transport museum.
This timetable is not set in stone - but it has evolved over 3 months. One of the reasons for writing this now is to share the news that we had another scan. The news could go two ways - either it will suggest we have a bit more time sustain this new rhythm or the news that we shifting to the next chapter, to a different level of care.
The final scan - 5th August 2020
Leaving the house at 6:45am, it was an early start. We are lucky the hospital is 10 minutes away and at that time in the morning it was easy to park. As first scan of the day we were seen straight away. The biggest challenge was how to get on the scanner bed. I suppose they are used to people either being able to hop on, slide over or arrive lying on trolley. In our fancy wheelchair were none of these. Eventually we worked out we could use the handle of a hospital wheelchair for Annie to stand up and hold on to and then, in a scene not unlike the Paul Daniel’s magic show, the chair was whipped away and swapped for a big trolley.
The other odd thing about MRI scanners is that they are massive magnets – so all, and I mean all – metal stuff (like your flask of coffee, watch, coins, phone etc) has to be put in a locker. They asked if I wanted to come in with her – I said yes before realising it would involve sitting on a futuristic plastic chair with both ear plugs and ear defenders. Annie coped amazingly. After a few false starts with the rather too accessible panic button we managed to get through the 30 minute scan. Back in the anteroom we had the getting back into the wheelchair routine down. Several of the radiographers came off their machines to lend a hand. I am sure many familiar faces to Annie over the last 8 years and countless scans. Universally lovely people.
Conversation 3
We were then put in a room that was so small it was surely a cupboard. Annie’s regular doctor is shielding at home but we met with one of his team who suggested the scan showed progression. This was not a surprise. But it is not the news we wanted. Later I the afternoon Annie’s doctor phoned and we had a chance for a further conversation. In essence, what was removed in the two previous operations has regrown. It has continued to spread elsewhere in the brain. He was somewhat surprised to learn that she was still relatively mobile, able to transfer to the shower, sit out in the garden. I was proud of this. Ha. Annie once again exceeding expectations. But his surprise is nothing to celebrate, it also means he thinks we don’t have much time left.
In the days since the scan we have started to see some changes: awake for two hours (8-10) to have breakfast and get dressed but then asleep until the mid afternoon. Perhaps the magical 11-12.30 slot has moved to 4pm.
What will happen over the coming weeks? Please don’t Google it. If you’d rather not know skip this next paragraph.
Gradually over the next few weeks she will start sleeping more and more. Afternoon naps will become whole day sleeps. Indeed on the day after the scan, this was the case. Speech, eyesight and mobility will further diminish. Balance will prevent transfer to a wheelchair without a hoist. It will become difficult to swallow tablet medications. Drugs will be administered by injection. She will be unable to get out of bed. She will lose consciousness. No food or water will be provided. She will gradually fade out. It could take day for her to die or it could last a week. It is possible she could suffer a further stroke, or a form of haemorrhage or could pick up a respiratory infection. What I think we can be certain of, that, unlike other cancers, she will not be in pain. And we have not seen the dramatic change in personality that plagues some sufferers of aggressive brain tumours. That said, the tumour is expectedly creating a degree of an altered state of reality, some delusion about time and place and visual and aural hallucinations, but in many senses it is still the Annie we love.
I realise this is a heavy read. But keeping this from you, carrying this alone or within our household, is a burden. The hardest thing is having to retell this over and over, trying to recall who knows what. Keeping it closed and secret is how people dealt with cancer in the past. There is nothing to be gained from keeping this private. If you read the previous paragraph you will have spotted that I used the word die. I realise more and more that we, as adults, do a very good job of avoiding the word. For the likes of Joseph we also need to be clear and straight with him. To talk around death – as passing away, going to sleep or becoming a star will only hurt more later. I’ve already started to work with a child bereavement specialist and am feeling well supported. It is difficult to gauge how much he understands, but he does ask about whether mummy will get better and we are straight with him when he does.
This is an impossible situation. If you want to do something, then please work out how to record and share a voice memo on your mobile phone. Find a lovely picture of you and Annie and record yourself talking about it. If not a picture, maybe an object. Take a picture of the object and tell us a story about it. Or maybe a song. A song from a nightclub in 2005, a gig or a car journey to a festival. Annie is struggling to read but she can listen and with a bit of effort can make out a picture on an iPad.
If you want to come and visit. Please get in touch with me. Don’t wait or put it off out of politeness. If you need to come over and spend a short time please do. It will have to be short, half an hour really. Annie can’t do long visits. There is a possibility she will be sleepy when you come. A few weeks ago we’d reschedule in such a scenario but perhaps now it is different.
