The other week I had my second scan since returning from Proton Beam treatment in Prague.
MRIs are just standard in my life now. The radiologists at the RAH remember me because I wear comfy clothes with no metal so I can go straight in and not have to wear the gown. No matter how noisy they are, I always get a little drowsy. They do take a long time.
From the scan it seems the dimensions of the tumour have shrunk back to what they were before I had swelling blow up – likely from both radiation and aggravation on the flight home.
This is good news, regardless of whether it is because the swelling is simply calming down over time, or if the treatment is having effect and causing the tumour itself to reduce slightly. Good news measured in mere millimetres is still positive to me.
It seems to align with my symptoms too, considering I have been doing a lot more and my pain is still manageable. I’ve been pushing my body with physiotherapy and hydrotherapy so of course there’s muscle soreness and pain relating to that, but nothing out of control or any of the pain spikes I used to get. I have been reducing my pain relief patches as well, so no extra pain from that is good news, too.
I’m surprised there was any news at all, if I’m honest. I felt sure that it wasn’t going to be until the next scan that we see anything significant.
So as long as symptoms and scans continue to make sense together I’m pleased. This tumour is too rare and behaves too strangely for me to bear many more weird developments.
The next scan is three months away, and should land right about the week of my birthday. Fancy that. It would make a nice birthday present, if not a Christmas in July present, to see a bit more activity in that one
For now the waiting game begins again.
Here’s an update for February – I spent the whole month in hospital!
I actually towards the end felt like I was the pet cat that just lives on the ward, or I was a ghoul hanging around, lurking in the corner. Has anyone walked Shona today? That kind of thing. By the end of week four I was familiar with all the nurses, the cleaning staff and the food service staff. Some of those people made the difference between the experience being a miserable time for me, and one where I was grateful to be in the care of such kind people.
It’s the third time I’ve been inpatient in the spinal ward at the Royal Adelaide, and with those private rooms, and the courtyard space just one door down from my room, I really couldn’t complain. Sometimes I’d look out the huge windows down to the trains coming and going and it really felt more like a hotel than a hospital. I also had a fantastic view of the planes coming in and landing at the airport.
I still can’t sit upright without triggering nerve pain in my legs, or at best I’m leaning hard to the left to offload pressure on my right side. It’s clear that spending November – January bedridden has left my abdominal and lower back muscles badly atrophied. So sitting up is also painful because it’s a strain for my body to hold itself up!
This means travelling by car is an ordeal that can leave me in pain bad enough that I’m hyperventilating. Getting to appointments is a big deal.
So the solution was to put me in hospital, where the doctors can come to me. Trouble is, things move slowly in the public health care system. Add to that the fact that my case is a strange one with a three pronged approach – I have an oncologist, a surgeon who is also a nerve specialist, and there’s the chronic pain team.
These three sides would defer to each other, make suggestions and assume one of the others would enact it. I had to be on the ball to be informed on which drugs they were talking about, and to prompt them to make decisions or changes to my chart. If I hadn’t been actively engaged in my treatment, I’m sure I would have been in hospital a lot longer. It took my pushing to get my new medications streamlined so I’m on the high dose faster. It took reminding the doctors on the rounds to get me weaned off a drug I no longer need to be on.
Anyone who knows me will laugh or find it unsurprising when I say I took notes after each conversation with a doctor. I must be such a difficult patient. Plus my parents would ask very detailed questions – I have no doubt that the ward doctor handling my case hated coming to my room on the rounds. After my dad once demanded a justification for a medication change the ward doctor could’t give, he would always after that search the room and if dad wasn’t there, he’d relax.
So we’ve changed my pain relief plan somewhat, with further changes to come. Pain has dominated my thoughts for this past month.
And we’ve made a plan for my physiotherapy rehab. Everyone keeps telling me to slow down, take it easy, and go slow. It’s a long road ahead.
I know everyone telling me that is right, too, because I over did some exercises last week and it left me bedridden for three days. I have to learn my limits – sometimes the hard way – and pace myself.
One benefit of being in hospital these past few weeks is firstly the safety net or knowing care and support is just seconds away.
The other benefit is the time and space it gave me to reflect and to plan. I need goals and steps to motivate me through rehab. It gives me focus and drive.
Somehow it’s already March. I’m going to plan ahead for my health to be my project for the next 4 months.
Let’s see how far I can get in that time.
I guess this is my monthly update and my chance to give an update on my condition, considering I’ve been silent for the whole month. You can’t blame me for needing time to adjust from 1°C in Prague to Adelaide being perhaps the hottest city in the planet this week at 47°C in the CBD!
For those friends already looking to visit me I’ve had to explain that I’m bedridden still. I’m not able go out and catch up over dinners or lunches. People have to sit at my bedside while I’m stuck mostly horizontal in one of few ‘relief’ positions that don’t trigger pain.
The fact is I’ve returned home more disabled that I was when I left, and that means setting up the house with new equipment. As prepared as we tried to be with the flight, a few things were more difficult than they needed to be, too, not least of which being Emirates leaving my wheelchair and the big box of my mobility equipment behind in Dubai.
No, really, they did!
The first flight ran late so the connection was short and obviously they ran out of time when transferring things – but surely there should be a way to prioritise medical equipment? Apparently not.
The guy who told us that 4 of the 6 luggage pieces didn’t make it at first really didn’t catch the significance of that. We kind of stared at him blankly – me, in pain, in the terribly uncomfortable chairs they put you in, no handles to push yourself and with staff assigned to push you whether you want them or not – and he went “Oh!” and went off to organise loan of a chair from Adelaide airport. I assume they expected me to crawl home. I was grumpy as hell but it’s hard to express anger when you’re being pushed around and unable to direct yourself. Hard to assert yourself without agency.
That interaction was balanced by two separate people recognising me and approaching me, which is surreal. Especially following a long flight where I’d taken heavy pain killers and had little sleep. The whole trip was a blur. Particularly when I had to psych myself up to sit painfully upright for take off and landing. There’s just no getting around needing to be up for that, as much as we asked if I could recline.
The drive home was another blur, starting to feel that fuzzy dizziness that jet-lag brings, my ears needing to pop and my stomach growling.
Anyway I’ve told this story of my flight and return because of how abruptly that dreamlike state was broken when we arrived home. Because, you see, I needed the things in that box that didn’t make it. It was the realisation that I can’t use the toilet which hit me hard, and suddenly the build up mix of sad and angry overflowed.
The average toilet seat is just too low! If I tried I would fall into it and not be able to get up. It would hurt. It was so strange to realise that of course most private toilets don’t have hand-holds and bars, and that I’d come to take for granted the public and hotel toilets I’d been using, which often even when not disability access had them. Of course home toilets don’t have those things.
I have become dependent on the over-the-toilet seat frame we bought, which was then waiting for us in Dubai. Not being able to use the toilet in my own house upset me more than I could have predicted. I guess for what it represented – I was back home with everything so familiar to me, yet it had become strange to me in being unusable, in not working for this new me. It was the realisation that it was going to take a lot of work and a lot of set up to make my home comfortable. That getting ‘back to normal’ was a long way away. Things are going to be different now.
I don’t want to make this a long-ass essay, but there’s more updates to give!
I’ve been booked to be admitted to the Royal Adelaide hospital next week. When your doctors ask you, “Are you willing to be an inpatient to get the services you need and be eligible for more?” the answer is, of course, a begrudging “If I have to…”.
Nobody likes being in hospital, but the trouble is I’ll be waiting weeks for referrals, and admission will mean avoiding the painful, exhausting and time consuming work that is travelling to and from appointments. I just can’t sit upright and there needs to be accommodation of my ‘relief’ position when I arrive at my destination or I just can’t go – sitting in waiting rooms is agony, and most places aren’t prepared to deal with someone with my issues.
So we’re sort of gaming the system, to get immediate access to doctors, who can come to me instead. We shouldn’t have to do that, but what’s the alternative? We ideally need transport like we had in Prague, something with a gurney that doesn’t involve me illegally lying down in the car. We need a reclined chair in appointments, and there’s no getting around how vast the new RAH is, and the distance and wait times involved. Ideally, I should be eligible for Rehab In The Home – but I’m not because you need to be recently inpatient.
I hate being in hospital. I want to have the privacy of my own bedroom in a comfortable bed….but if it gets me a pain specialist ASAP… I’ll do whatever I have to do.
Maybe I’m not getting worse, but I’m not getting significantly better either, not in ways that are going to improve my independence. I need guidance and experts. Maybe I’m standing for longer, walking further… but the next step of improvement is going to be a leap: lowering pain relief medication, learning what physiotherapy to do, SITTING UP without pain, which is the greatest barrier to plenty of things.
Isn’t it just so ironic, to be too cripple to get to rehab… to be in too much pain to make it to the pain specialist.
Isn’t that a block of text! Thank you if you’ve read this far through my venting!
Apparently I needed it!
After ‘recovery’ week 2, I’m finally going home!
I have been thinking about what I’d like to achieve once coming home. I guess I’m making some New Year’s resolutions of a kind. Adelaide will eventually be building its own Proton Beam Centre, and that needs to gain visibility and momentum. It was just a case of bad timing that I needed treatment before it was ready. Maybe I can help that in some way.
This campaign is no longer about raising funds. I’ve been blown away by support and it has helped so much. This went way bigger than I thought it ever could. I have that security now to dip into for support, as I will setting up home with occupational therapy assists for recovery post-treatment and with deteriorated symptoms.
Instead of trying to raise funds, I’m going to continue with monthly updates to keep visibility. To show the aftermath, to show where money goes, which services are there to help, and importantly, where the gaps are. Also just in case people want to follow my story.
The most important thing to know about my situation is that I’m not just sick and seeking a cure – I have a disability that is a lifelong condition.
We could get rid of my cancer and I’ll still have a spinal injury caused by it. The reality is that getting rid of it is far off for me – this proton beam treatment takes many months to have an effect. In 3 months hopefully an MRI will show it’s shrinking. The tumour is wrapped around nerves. Maybe we intentionally leave some rather than unnecessarily debilitate me with an aggressive surgery.
Cancer is both acute and chronic. The heath care system, the university system, the workplace sometimes struggles with that.
So I’m going to keep talking about it. I am going to switch my updates over to my blog – it’s a better system for photos and longer text updates. I actually started this blog right at the beginning of my diagnosis but it was too raw and personal to share widely.
If people read backwards into the old posts I need them to be aware that it is a discussion of life with cancer. There’s some light posts and pretty pictures but also heavy stuff. Read at your own risk!
Otherwise, if you don’t want to read my melodramatic essays, thank you again for donating so generously and following my journey this far. I couldn’t have done it without you.
Just a quick update in my first ‘recovery’ week.
Without the daily trips to the clinic I feel a bit lost. I guess to some extent that’s a feeling everyone gets at Christmas, the dates and days get all mixed up, and everyone is frantic about when the shops are closed. But here we’re quite isolated so I feel those things are more stressful. I’m getting slightly agoraphobic here in my safe hotel room.
I’m pushing to practice being in the wheelchair for longer, but the nerve sensation in my back and legs is just so different and stranger than it was before. Sometimes I’m just pins and needles all over. My skin is reacting to being zapped as well which doesn’t help comfort levels – it looks like a huge angry splotch of sunburn, and hurts like it too. Pictured – how many pillows can one wheelchair hold! Each is an attempt to relieve a quirk of nerves playing up.
I am glad that I’m coming home in the new year, it feels like the beginning of a fresh chapter of my life. Post-treatment is psychologically such a different state of mind. We spent so long waiting to find out what the next step would be, radiation or surgery, and then once I was ready to leave for treatment there was still weeks of waiting anxiously.
Now we have more waiting, for the effects of the treatment, but it’s done.
There’s nothing more for me to do than let my body fight this, let it do it’s thing.
My treatment is now all finished!
Now I can rest!
Well, now I can work on trying to sit up without pain, and work up to walking a bit further each day. I’ve got a new pair of forearm crutches that are so fantastic teaching me balance sometimes I almost forget I can’t walk and just want to float forwards! Hopefully I don’t end up falling flat on my face.
I’m very grateful to be able to spend Christmas with Joey, visiting from London. I can’t believe we’ve been here so long, I’m torn between wanting time with him but counting down the days to get home.
I’m posting a little clip Joey took of my last trip into the clinic! Bless the drivers who always made sure I was wrapped up like a mummy against the cold snow!
My goal for next week: sit up for some of Christmas dinner! They celebrate on the 24th here and we’re lucky to be able to have a traditional Czech meal at the restaurant of the hotel.
I’m looking forward to it.
We’ve come to the time where we’re trying to prepare for the trip home. Next week is my last week of zaps and then it’s Christmas, so we’re trying to plan ahead of time but my condition is still hard to predict and things can change daily.
Case in point, we’ve had to add a week to the trip of recovery time, to be sure I can handle the flight home. Three weeks until I’m home.
Sitting upright still causes me a lot of pain and there’s no getting around needing a wheelchair in airports and sitting up for take off and landing. I’m optimistic I can handle it but there’s physiotherapy work to do, so I have to tell myself one more week can’t hurt. I just want to be home and have it all done and it’s agonising to draw it out. We’re so close to the end but getting home feels so far still!
One excellent distraction has been hearing the Christmas traditions of Prague. It just sounds so different to Australia, and the winter atmosphere really lends to that sense of pagan remnants and folklore traditions. We need more of this kind of thing in Australia – more children getting interrogated by a Santa accompanied by an angel and a devil and worried they’ll be getting handed coal not candy!
Another relief has been that mum has gone to so much trouble to bring me many small comforts that make all the difference. Whether it’s the mini-tree Christmas decorating or making comfort food just like at home. When I’m sick I usually have a running list of things I can’t wait to get back to (always food) – but this time thanks to her and thanks to no nausea (a miracle!) I’ve been happy, well fed, and completely indulged.
I cannot emphasise enough how much of a difference my pain management and that lack of nausea has made. Pain creeps into every part of your life. I know Dad and Cathy are waiting back home ready with all my favourites too. Thanks to the internet I can feel connected to their Christmas preparation too even from so far.
So on the one hand this week has been a frustrating change to the plan – but nothing has gone particularly worse this week, and for that I am thankful.
Any improvement is worth celebrating!
Each day I’m more mobile, each day I’m stronger!
It’s the final count down! Finally on single digits I have just 9 zaps to go!
It feels so good to be on the final leg of treatment, and I’ll have a few extra days after which I’m optimistic will be some much needed recovery time. Climbing in and out of gurneys and molds each day has felt like some wild gymnastics some days. It may just look like rolling and half push ups, but sometimes it’s all such a rush! Positioning can make such a difference to pain and is obviously crucial for treatment.
I’ve been trying to get stronger in the tiny ways I can so that once I’m home I’m not starting my kind of ‘rehab’ from scratch. It has been limited and frustrating – turns out a sore tumour right at the base of your spine rules out a lot of movements! See pictures a silly selfie I took to show my sisters’ my atrophied legs.
Once I’m done with zaps it will be a long wait to see the effects, and ongoing symptoms are still a great unknown.
But we’ll get there when we get there! For now I’m taking my short walks around the room on my two sticks as often as I can, eating like a monster and driving mum mad. It must be like when toddlers first start to walk – I’m getting gradually well enough to get in the way and find new ways to slip and hurt myself, but not enough to be of any help!
I’m almost beginning to grow afraid of coming home, of leaving this weird limbo world where we’ve arranged this sheltered hotel room as I need it.
But there’s still a few weeks to go! Getting there!
This week has been getting into regular routine a bit more. That feels good.
Before I left Adelaide, my friend Charlie got me one of the greatest disability assists I have, and I want to draw attention to it. It’s one of those buzzer alert buttons which alerts someone with the radio alarm. I was using it the very night she gave it to me, but even when I don’t, it’s been a huge relief and reassurance to have.
Giving up control and independence has been one of the hardest parts of all of this, as I’ve spoken about before. This tiny tool gives me something to know I’m safe. Mum is near. She can be here immediately. Emergency services are near. I’m not alone.
Its confronting to need equipment most people don’t see until later in life. But this isn’t the forever me.
Being bed ridden has been hard. Travelling via ambulance to and from the clinic has been a huge help, but still hard. Its inelegant, it feels clumsy. I feel stranded, pushed about like an object, unable to see where we’re going. None of that is the fault of those pushing me, it’s just a distance thing. I’m flat, they can’t see my face.
But again. This isn’t the forever me. I mean eating donuts every day, kinda wish that was. But the rest. Its been a monotonous week as much as it can be, which means small changes, small improvements.
I think I’m getting the hang of some things, getting incrementally stronger daily in my arms and legs after 2 weeks mostly bedridden now. But we seem to have the acute pain under control now. Again the team at the Proton Therapy Centre are my lifesavers, hiring what I need. Mum is my guardian angel.
Tough times don’t last, tough people do.
I am Aeneas and this is my descent!
I’m a classics student. You’ve gotta let me be dramatic sometimes.
In the middle of the night I was thinking about myth, as you do, and I realised I can write my current experience as a katabasis – a descent into the underworld.
Odysseus descends to gain special knowledge from the seer Tiresias. Aeneas travels to the underworld – far off the edge of the known world, to hear a prophecy of Rome’s future. I can pick and choose elements of each of their experiences that resonate with me, but this has been at it’s core a difficult journey in pain. The landscape, the characters, the challenges and the results all add up to something very familiar. But it’s so hard to describe pain that the only way to do so becomes through these metaphors and symbols.
To start, it is a physical landscape far from home that is inhospitable to me in many ways; rough bumpy roads, steep and winding hills. The road out from my hotel and the one up to the hospital are known to be two of the worst surfaces in Prague – of course. This is before we even get to the cobblestones in the old town! It’s as if they’re specifically designed in shape and size to be as ridiculous for wheelchair wheels as possible!
I’m a long way from getting back to there at this point – our transport system to the clinic now is to lie flat in a private ambulance service, I can’t even handle upright in a normal shuttle anymore.
I have a special companion to guide me, one with special abilities and special knowledge as scientist and mother. Mum has been my Sibyl, who holds me as still as possible in the backseat of transport, keeps me motivated.
There are also monsters that block my way through – the most obvious one being pain. But also mobility. Loss of strength, control over my body. The beast tumour inside me has turned me into a weak version of myself that is frustrating, but also surreal. This doesn’t feel like the real me. We’re still in the worst couple of weeks, and I’m not despairing, I’m hopeful.
Trust in doctors is a leap of faith, faith in the guardians who protect the path forward through the underworld. They give me magic potions in the form of pain relief and sedatives to give me temporary heroic strength! At the centre, there’s an elevator down to the treatment level. My wheelchair is pushed through corridors only the initiated can enter (please sign this form accepting incidental radiation, thank you).
Then I enter the machine. Into the belly of the beast. I lay prone on a platform, and I’m left alone in the room. The entire building was built around this thing. Sometimes I wait sometime for the beam to make its way to me, as it’s used by others in the rooms next door to me. It’s a brief time where I contemplate the technology and what we’re capable of as humans.
Then I emerge changed in some way. Maybe I feel tingly, maybe just exhausted. Who knows what’s occurring inside. Back up the elevator, back in the transport and a van trip potentially as painful as the one in, back the way I came.
But I leave having learnt each day in some small or large way my capacity to bear pain. I’ve learnt to accept the unknown. I’ve had to give myself up to my future, it’s completely out of my hands. Who knows what changes each day inside me? Who knows how my body will react today?
But I still have my special helpers; the drivers who go so carefully around the long way to avoid bumps as much as they can. The ambulance people who get to witness my panic attacks if I’m claustrophobic of a pain crisis hits halfway there – the poor team who had to pullover and rearrange me while I got my breathing under control and relaxed again.
My return to the hotel room comes with special knowledge gained about myself, a little about the medical science relevant to me, and most importantly about the kindness of the people in the health industry and the lengths they’ll go to for me.
People ask me how I get through it. Well, you just do. You keep going, because what else are you going to do? But it’s the people around me who make all the difference. Things could be so much worse. Each small act of kindness is so significant.
We are all touched by tragedy and we all experience our own katabases, big and small. Emotionally, physically. We’re strongest with each other, and the heroes of the stories always have help. They can make their return. But they have to give themselves up to it. A symbolic battle is still a fight for survival, and it’s all relative.
The tiniest things we can do can make such a difference.