19th August 2021: Anniversary of Starting Chemo

fabiennesmorgana

2 years ago

This resonated with me today – it’s part of why I share about my experience on my blog and why I talk about it.

Content warning/trigger warning

This blog post talks about cancer, anger, trauma, grief, illness, surgery, chemotherapy, disability.

Today is the second anniversary of my first chemotherapy infusion.

I’m acutely aware of it in ways that are difficult to explain. There is Before Cancer, During Cancer, and After Cancer – I think I am finally starting to get to the ‘After Cancer’ bit.

The reality is that I am still living with the impacts of chemotherapy.

Chemotherapy induced peripheral neuropathy – my hands and feet have altered or absent sensation; it is sometimes painful (but not as bad as it was).
This has impacted upon my coordination, it’s getting better, but one of the things I still notice (and I’m self-conscious about) is that I often drop food on myself when eating – not a big thing, true.. but I didn’t used to do that.
Eating needs to done mindfully, slowly, and I need to rest after a meal to avoid indigestion, reflux and nausea, again, something I had never dealt with before chemo.
I’m a bit more clumsy, generally.
My speech patterns, vocal flow, pronunciation, and ability to ‘speak off the cuff’, to orate, to present, to facilitate is nowhere near as fluid as it used to be, even with speech and vocal therapy.
The toenails on my big toes are still chalky, splitting, and often painful (again, not as bad as it was.
My processing power is probably back to .. about 95%, but my processing speed is probably about 90% of what it was… And that’s frustrating. Again, it’s gotten better, it’s getting better, but I still feel so much slower mentally than what I was.
Multitasking is next to impossible.
I still have altered and absent sensation in my abdomen from the DIEP flap as well.
My hearing, my eyesight, and my vestibular system generally still haven’t fully recovered. The reality is that now, nearly 2 years post chemo, those deficits are probably permanent.
I experience vestibular flares – I get dizzy, experience vertigo, and lose my sense of balance. I have not had a bad flare where I have been bedridden for nearly a year, but I have had bad days and minor flares. Fatigue management and hydration seem to be key.
I said to my oncologist; I feel like my internal thermostat is fried. His response: “that’s because it is”.
Overheating – part of that is also my endocrine medication, post chemo, and we are hopeful my hormone levels will allow me to change to a medication with less side effects in January. So.. I face another summer and hope that it isn’t as bad as it has been.
I can also get ridiculously cold, especially after my hip replacement. Like chattering teeth and turning blue kind of cold. With my CIPN (chemotherapy induced peripheral neuropathy) that means that my hands and feet also become painful when I get cold.
I still have lymphoedema flares in my hands, arms, feet, ankles, and lower legs: this is usually after sitting without elevating my legs, or walking. I do lymphoedema massage at every second to third day.
My eyebrows; they were black, and arch and defined… they came back brown and not as powerful; I feel like my arched eyebrow no longer gets the response it deserves, lol!

Recovery from total left hip replacement

I’m three months post hip replacement, and that has been a frustrating setback in so many ways. Having said that, I cannot tell you the relief when it wasn’t cancer.

I’m on hip precautions until my hip surgeon reviews new X-rays in November, and that complicates life. I’m back to building my capacity again with daily self paced physio, weekly rehab, increasing the distance and degree of difficulty of walking (inclines, uneven terrain), and endless frustration with shoes that I can wear that I can slip on that don’t cripple me. Wounds (blisters) become a big deal when you have implants.

The fatigue has returned. You mention that to people, and they say “oh everyone is tired by a full working week.”

I can not stress enough the difference between fatigue and tiredness. I’m talking about the need to lie down after work and not move; no energy for housework or cooking, no energy for a social life (my friends are understanding, and when we do manage to cath up, our catchup involves a three kilometre walk).

I’ve spoken to both my surgeon and my GP about it. My surgeon just looked at me and went, “You are growing bone onto the implant, and you need to rest to heal.” My GP, oncologist, and physio have emphasised that I have been very sick, and that my body has been through a lot, and that it was yet another major surgery on top of what I have had, before I was fully recovered.

There are no regrets in terms of having surgery in May. I was basically bed bound for nearly two months prior to try to manage the pain and not exacerbate the situation with my femur dying. I didn’t know bones could do that, and I would be quite happy to never have a diagnosis of oesteonecrosis again, please, and thank you!

Anger

Cancer rage is real, and so is menopausal rage.

And it’s okay to be angry and to sit with that. I read my Facebook post from the day before I started chemo, and I go, “Wow, I was angry.”

It’s really good to sit with my feelings today and realise I have been able to process that anger and that the grief aspect that drove the anger is also easing.

Today, an anniversary

Anniversaries are important, especially when they’re still fresh.

Today, I met up with an interstate visitor for coffee and a walk, I have another catch-up (perfume sniffing, walk, lunch, and the movies) tomorrow. I got to enjoy some of what my much loved adopted city has to offer.

I am finally starting to feel like I am approaching the point in my recovery that I thought I was at this time last year.

There’s an active curiosity about what life after cancer looks like for me, and I’m really enjoying that. Curiosity is such an engaging place to view the world from. I am hopeful (another lovely emotion) that as I am able to embrace my life post cancer with less pain and more mobility, the experience of cancer will fade like my scars are fading.

I feel like that is how I am starting to look at it; wound care has an acute phase, a management phase, and then it becomes neutral. You still have to look after your skin and the scars. You can’t deny them, but life no longer revolves around their care, and hopefully, they only ache in bad weather.

So yes, you will still see cancer stuff here on my blog. It’s still part of my current reality as well as my recently lived experience. I’m hopeful that by talking about my experience and the way I am navigating it, it might help other people.

I have started to set more long term goals again: to walk 10 kilometres with ease, be able to dance for a few hours, swim a kilometre or two a couple of times a week, and do the 1000 Steps at dawn regularly again. It might take a year or two, but I’m hopeful that I realistically have that time and that my goals are achievable.

Today is a good day, and I’m really celebrating how far I have come.

Cancer Journal 14, Friday 13th August 2021: Chemo Edition

What I shared on Facebook on Friday, 13th August 2021, as my Cancer Journal Number 14.

Photo of yours truly during my first chemotherapy infusion.

These cancer journals were my ongoing strategy of keeping people up to date without having to share the same information again and again. I would write, and then I would get specific friends to act as beta readers, and that was helpful. Then I would post to Facebook, send the same message by email, What’s App, SMS, etc. It saved a lot of emotional energy for me, and that was becoming vital.

⭐ Cancer Journal 14 ⭐

☣️ Chemo Edition ☣️

Chemotherapy schedule

Friday 13th August 2021 (14)

First Chemo 10:00am 19th August.

Second Chemo 9:30am 09th September.

Third Chemo AM 30th September.

Forth Chemo AM 21st October.

Blood tests have to be done the day prior, and I also have to have an injection the day after.

People are welcome to pick me up, or to meet up after and drop me home, but this particular Oncology unit does not allow companions onto the ward.

It will be a 3 – 4 hour time infusion each time.

The first cycle will provide the blueprint for what the impact will be for me.

Typically, the worst of it is the end of the first week – hits around day three or four, and hopefully starts to ease around day eight or nine.

The second week I will be especially vulnerable to infection.

Reiteration of boundaries (yes, they’re important to me)

‼️Please stay away if you or anyone close to you are sick or have been unwell in the last 14 – 21 days, or if you have been at a hot spot. If you are unvaccinated, please consider if it is appropriate visiting me at this point.

‼️I’m going to reiterate the boundaries I wish to hold to, and that I first set out when I was diagnosed.

This is not a criticism of anyone for whom these following 5 points have been helpful, nor an invitation to explain why it worked for you or those you know, I am just requesting these boundaries be respected in my process.

Five Main Boundary Points

1. I don’t want to frame this experience in any kind of warfare terminology (a battle, a fight, winning, etc), nor do I accept warrior or survivor as appropriate titles / descriptors.

2. I also don’t want people trying to advise me about medical or lifestyle choices.

3. I appreciate everyone wants to share a success story in encouragement, but if it isn’t your lived personal experience, I invite you to consider that this is not the space. For every success story, someone is grieving, several with whom I have a deep, personal connection, and those stories are not helpful to them or me. Particularly if it is my mother’s brother’s cousin’s friend type 6 degrees of separation story.

4. And any of the ‘that which doesn’t kill you makes you stronger or ‘sit with the energies that attracted this’, or ‘meditate upon why this has manifested’ crowd can fuck right off.

5. Please do not tell me where I need to focus or what I need to do. Sit with the urge to fix and advise for at least 24 hours and ask yourself if it is something that I need to hear or just something that you feel the need to say because this is uncomfortable.

Ongoing communication

I’m hoping to continue to communicate publicly about this in a way that models good boundaries and encourages conversations and raises awareness. So apart from my own treatment goals, that’s been my more holistic goal through this experience to date and continues to be something I am aiming for.

Availability / Capacity

This had became very important to me. It had become obvious very quickly that loads of people want to receive absolution from the person who is sick or in need. News flash – that person does not have the emotional energy to deal with all the apologies and guilt, and nor should they have to! If you have the capacity, great. If you don’t, don’t take up space that could be filled by someone who does, and don’t demand emotional labour from the person who should be central to the experience; I.e stop apologising. Apologies should only be about situations where you then need to also address behaviours. I do not subscribe to the whole bullshit around “ohhhh… When the chips are down, you find out who your real friends are!”. No, no you don’t, you just find out who has capacity at that time.

If any of this is problematic for you, I invite you to consider the wisdom of stepping away from this space and tending your garden, I do not have the emotional, spiritual, or mental bandwidth to negotiate the needs or wants of others that don’t align with my current experience.

Friendship links

Here are some great articles on friendship that explore the idea that not all friends are going to be in an inner circle, and not why you can’t necessarily rely on everyone. And that’s ok! One of the things that have awed me during this experience is what amazing people I have in my life. And that is important.

It didn’t, but I consider myself an optimistic nihilist, so I was hoping 😉

I am intent upon continuing with dignity, grace, and compassion, but with these boundaries in place.

Side effects

Most likely side effects are:

Fatigue
Hair loss
Diarrhoea
Nausea
Taste changes
Infection
Nail changes
Weight gain
Brain fog
Bone + muscle + nerve pain

❗ menopause is a given

Rare side effects are:

Neuropathy (nerve damage)
Severe illness
Death

The psych suggested the reframing of “delicate and slow” for one week out of three, so I am working with that, and with the concept of this being a recalibration process.

After chemo, I will start endocrine therapy, so that will be the final treatment stage – as yet, I am uncertain of the finer details of that.

In summary (Cancer Journal 14/Chemo Edition 1)

‼️ I honestly don’t know what my emotional landscape is going to be over the next few weeks, so I will simply say this:

⛔ I anticipate being very emotionally unavailable, so if I am insensitive or fail to engage, apologies in advance, but right now, my focus is on me, my self care, and the care of my household.

🚫 Once we are out of lockdown, I may well welcome visitors again, but I’ll let you know – I’m probably only going to up to see one person a day at most, and it will typically be in the afternoons I suspect.

⭐ This is the fourteenth of my Cancer Journal entries, if you are interested in the others, I have put links in at the bottom of this post.

🌹 Be kind, Gentle Creatures, tend your gardens, take time to eat the roses, and walk your boundaries.

❗ Check your breasts, check your testicles.

This is where I will be undergoing chemo, for those that are interested.

Self checks

Ensure that you are vigilant around your self-examination. Train yourself to check your breasts/testicles routinely, and monitor your bowel habits and your urine output. These are our body’s early warning signs, and we don’t have a lot of awareness of them.