I have been thinking over the past couple of months about how your relationship with your body is a major challenge in the cancer journey.
This seems obvious, and I’ve spoken about it before when describing being first diagnosed – in the first 48 hours it was like I was separate from my body entirely. It felt alien, numb in a very unnatural way. When I moved I felt like I was at risk of causing irreparable damage, unseen, inside. It was more than just “there’s an alien thing inside me”, it was absolutely full-bodied shock. To be confronted with the fact that something you think you’re familiar with – your own body – is not as you thought it was.
But there’s so much more than that. I haven’t had to go through chemotherapy, as my tumour is not receptive to it, but I understand that is an entire experience in which body image and self-consciousness play a huge role. Instead, I’ve had radiation therapy during which I had to take steroids to reduce inflammation, compression, and to control pain. Steroids drove up my appetite, as I assume did the treatment, as my body reacted to the attack. Add to that the fact that I was finally taken off the opioids that gave me such terrible nausea.
As a result, I put on weight, something I haven’t been able to do for years. I’ve fought to maintain it, and I’ve accidentally dropped low enough to be underweight according to BMI, and been turned away from donating blood. More than just weight gain, the steroids caused my face to swell up and go puffy like a cherub. It was a huge change for me.
Unfortunately at the same time, my pain was so aggravated by treatment that I was left absolutely bedridden, and unable to walk without crutches. You can imagine that a lack of any exercise or much movement at all simply compounded the weight gain. The double-whammy here is that on top of weight gain I was adapting to disability, and a body that wasn’t doing what I wanted it to, anymore.
I couldn’t recognise myself in the mirror, and I couldn’t stand at the mirror for long without having to rush in a hobble back to bed and wait for the pain to ease. I think not recognising myself was a big factor in triggering not feeling like myself.
By the time I was weaned off the steroids, my swollen face ached – it felt like I had two black eyes. I suppose this was aggravated by bad sleep for a long time. The pain and weakness mean I can’t sleep like I used to. I am most comfortable on my side or front, curled up. But now I could get stuck unable to roll back over, or I could get so stiff that rolling over triggers bad pain. Again, it seems obvious that disability infiltrates every part of your life, but there are moments where you really feel it.
At first gaining weight was a benefit, because I struggled for so long previously, and I thought that once I got home I would be able to go to the gym, and build muscle while keeping the weight. But it tipped over to a point where I became uncomfortable. The issue isn’t so much weight gain as the discomfort – they say attractiveness is mostly confidence, whoever “they” are. I absolutely lost confidence.
I cried my way through the “diet” chapter of a book on spinal chord injuries and pain. The book was incredibly valuable to understanding my own pain, but it was also confronting. To be grouped along with those who have paraplegia and other serious injuries made me feel profoundly guilty. Things could always be worse, and I try to always remember that and be grateful. But pain is pain, no matter the severity of the spinal chord injury (SCI). One line remember the most, was that even a couple of kilos can be the difference between transferring independently (from wheelchair to bed/toilet/chair etc) and needing assistance or struggling to mobilise.
While I spent all of February in hospital, I was in a vulnerable place. I was thinking that if only I had been a bit more active in January, maybe then I wouldn’t struggle to mobilise so much. This probably isn’t true, and there wasn’t anything I could do before the pain specialists saw me, but it was incredibly hard to stop thinking it every time I got up. I was blaming myself for the results of treatment.
Not feeling attractive, and the resulting lack of confidence, can impact a relationship if you aren’t careful. It is not my partner’s fault that I’m facing new challenges, but I am undeniably not the same person I was a year ago. I don’t mean this physically, though that’s true as well, but emotionally and mentally. The cancer journey is one big evolution with many smaller metamorphoses within it.
It also made me self conscious in front of friends, which is just the silliest thing. Being bedridden means I haven’t had a haircut in many months, which could go a long way to making me feel a little fresher. I certainly haven’t worn make up in nearly half a year either. To look through Instagram is to slab myself in the face, as other people’s lives seem so polished and effortless.
When you’re at war with food, and at war with your digestive system, there is surely an inevitably strange relationship with your body. It’s not entirely in your control anymore, and you just have to guess at what’s happening.
It blows my mind to think that in the last 5 years, when I had sciatic nerve pain down my legs, and back pain that kept me up at night, I still managed to do so much. During the time in which I’ve had symptoms and pain, I have hiked up four mountains. The picture I’ve chosen above was from 2015 in the Lake District, England. I look at it now and I’m amazed that I could stand up straight, that I was so slim. In contrast now I feel heavy, I feel slow. I feel so far away from ever regaining that body, from regaining that ability to hike as far and as high as I wanted to go.
This envy of my past self is a desire for both image and ability. I want to be comfortable with my body image as much as I want strength. I think that if we don’t acknowledge that these things are so intertwined, then there’s the risk of rehab and recovery being driven by the wrong goals. There’s the risk of becoming far too invested in image, of possibly developing an eating disorder, and dependence on the validation of others. When you’re sick for this long, there’s an obsession over symptoms, of tracking progress, and counting, always counting. Tracking calories while in treatment was a way to ensure I was getting a balanced diet when I needed it the most. But counting calories can be a slippery slope towards a restrictive diet.
My physiotherapist has told me that a recurring theme he sees in those he works with is looking in the mirror and not seeing yourself anymore, just as I experienced in Prague. I would suggest that another is not fitting old clothes anymore. For a long time I have felt housebound simply from the fact that I wear mostly comfy clothes and pyjamas all day. I don’t fit my nice clothes, but to buy new clothes feels like defeat, like accepting this body I’m so uncomfortable in.
I did buy nicer clothes that fit me, eventually. Because when the choice is either to remain miserable and overthinking everything, or to accept your body as it is, then move on, it isn’t really a choice is it? You just have to move on.
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.
It’s time for a monthly update already?
Sometimes time seems to go so quickly. I definitely felt like I’d time travelled in Prague, skipping the whole tail end of last year. Then again in February somehow four weeks passed by in hospital without me really noticing it.
But there are also time where I feel so frustrated that I’m still sore all the time. That the physiotherapy work moves so slowly and I still get so fatigued. That I’m still on Norspan patches for pain relief, and it takes many weeks to gradually lower the dose.
I have to remind myself, very deliberately, that some ache all of the time may be a much better price to pay that the sudden pain spikes I used to have. It has been a month and a half since my pain last escalated like that to the point where I panic. I have to remember also that at Christmas I couldn’t sit up for as long as I do now, as often as I do now.
At this point, I am still mostly in bed. I sit up for every meal, and I try to stay as active as I can. That usually means doing my set physiotherapy exercises, or getting up to tidy the room myself, going and collecting my food myself.
It is amazing how debilitating a few months in bed can be. I am working from the ground up in terms of building back muscle enough to be able to hold myself up. It blows my mind to think that for most people sitting down is restful, while I’m here straining to stay up for as long as I can, sweating.
Hydrotherapy has been absolutely essential to this. While getting there in the car, even though it’s just around the corner, can be difficult and painful, being able to hang in the water is the best relief I’ve felt so far. My weak side is just supported in the water, and I’m able to stretch in ways I just can’t in bed without hurting myself.
I could almost cry to think of how desperately I needed that and didn’t realise how much strain just standing takes now. I hesitate to even say that, because it feels so intimate and can be such a vulnerable thing to admit weakness, and all that that implies. Weakness means dependence, from on my walking sticks to on my family.
The next steps for me are movements back towards normality. In baby steps, at least. I need to move towards outings outside the house. Logistically this is daunting. Psychologically, too. I have only just started to spend more time outside, to take short walks around the garden.
Everywhere we go now there is a choice between wheelchairs; the portable one that’s less comfortable, or the bulky one that’s comfortable, but requires a handi-cab, and leaves me very self conscious.
Even things like clothes now cause me to overthink every choice. Obviously track pants are much more comfortable, but if they’re too heavy and I get too hot I’ll be stressed and uncomfortable. Plenty of my old clothes don’t fit me anymore, thanks to the weight I gained on the steroids. But I’ve also now returned to nausea and very little appetite, without them. So do I invest in larger sized clothes if I’m already shrinking again?
I know I’m lucky enough to say I’ve never struggled with weight gain before, and in the grand scheme of things this is one of many small bumps in the road. But man, the kind of body issues you get along with a cancer diagnosis can be a real slap in the face, right when you need it the least. At least I can recognise myself in the mirror again, now.
I chose to defer uni this semester, considering it’s very hard to study when you’re mostly horizontal, and even harder when you’re on drugs that stop your eyes from focusing. But this does mean I’ve been a bit at a loss for meaning. I need a hobby or two that will keep me intellectually engaged, and ideally keep my hands busy too. Finding that is still a work in progress.
The paperwork involved in being sick, I think I’ve mentioned before, is absurd. Each weekday morning I’m either taking calls or making them, booking in appointments or asking for letters. I am STILL not on the Disability Support pension – it is so hard to chase doctors up for letters, even when you make it a condition of your hospital discharge! I am also waiting to hear from the NDIS, who finally acknowledged that the application was being looked at. I understand that receptionists are there to protect access to doctors who are very busy, but it seems nobody follows up calls they say they’ll make anymore.
Anyway on the whole I’ve made a lot of progress, on a long road to regaining some independence. It’s hard to make goals, not knowing what my pain will be like, or when and even if I’ll reach some wall in terms of improving mobility, at least while the tumour is still in there. In the next month I’ll have to face some scary big steps, physically and mentally.
Here’s hoping in another month I’m again sitting here (lying actually), reminding myself of how things used to be, and counting up small achievements.
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 used Scootershack wraps on my sticks, I think it looks alright! 🙂
Just call me the girl with the purple sticks…
because we aren’t
given any other
– they wanted us weak but forced us to be strong.”
Amanda Lovelace, The Witch Doesn’t Burn in This One
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!
Loch Lomond, Scotland (2015)
I collected together all my inpatient wristbands.
I’m thinking I’ll tie them together and see how the past year compares with this one upcoming.
I really have no idea what could be in store. More surgery, none at all?
Check ups often or occasionally? Back to study or take a break?
I’m optimistic that I can deal with that uncertainty a lot better now than I could even just a few months ago.
One things for certain and that’s physiotherapy rehab!
There’s always work to be done!
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.