Sunday 03rd October 2021: Cancer Journal 16 ~ Chemo Edition

fabiennesmorgana

1 year ago

Yellow UNO card with number 3 on it. Cancer Journal 16 — Cancer Journal 16

What I shared on Facebook on Sunday 03rd October 2021 as my Cancer Journal 16.

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, and send the same message by email, What’s App, SMS, etc. It saved me a lot of emotional energy for me, and that was becoming vital.

⭐ Cancer Journal 16 ⭐

☣️ Chemo Edition ☣️

Chemotherapy schedule

Sunday October 03rd 2021 (16)

Post Third Chemo ( 30th September ).

The first two rounds were on the 19th of August and the 09th of September.

As of this last chemo, I’m halfway through my actual chemotherapy treatment period, including the three weeks after the final chemo on the 21st of October.

Endocrine therapy

I will then have a 4 – 6 week break before starting endocrine therapy, which is a long game. The first couple of months can be rough, but I’m looking forward to having some recovery time between chemo and starting the next process.

By the end of chemo, I was so sick, I didn’t start endocrine therapy until January 2022.

Side effects

I’ll be honest, it’s gruelling.

I’m very sensitive to the chemo and I am experiencing a wide range of side effects that the Oncology team are helping me manage. There’s some unusual stuff going on in terms of interactions due to my other medical conditions as well.

This means that possibly the goalposts may have to shift depending on how these next three weeks go; they may reduce the dose across two treatments instead of me just having the final one on the 21st of October.

So that’s just a wait and see situation.

Emotional regulation was not my strong point at this stage in the process.

Confidence

Rest assured, I still have absolute confidence in the care and support I am receiving and in my treatment plan, but flexibility is key, especially with the additional factors of the scope of surgery, the impact of chemo upon my healing, and my other conditions.

A rough mud map for the next stage is post-last chemotherapy infusion, I will have a 4 – 6 weeks recovery period, and then I will start endocrine therapy.

The Oncology Liason Nurse warned me that the first couple of months of that can be pretty rough, and again, my sensitivity to chemo and so on comes into play here too.

Having said all of that, they are really happy with my management, and my strategies, physio is happy, and the dietician is happy – which is helping me manage my frustration with my significantly reduced capacity.

So… my management and general strategies are good, I have additional medication support, but I will be brutally honest, it was two weeks of awful and the one week of kind of ok this time around, and the reality is with the cumulative aspect, it’s going to get worse for the next two cycles.

Apart from staying on top of it all, which is a full-time job, there isn’t much more that can be done.

I did in fact, show this to my oncologist, and they laughed.

Superannuation Income Insurance

This week, I did do one of my “impossible tasks” and started the ball rolling on my income insurance as my leave entitlements run out this week.

It doesn’t sound like much, but it took a lot of psychological energy to take that step.

I’m not going to complain because I am acutely aware of my privilege in this situation.

Many people face this experience without private health insurance, without any kind of savings, or support of any kind. Long-term illness and chronic ill health can result in unemployment and homelessness. Women over the age of 45 are one of the fastest-growing groups of people who are homeless in Australia.

Be mindful that your Beloved with cancer may be facing challenges on a whole heap of fronts.

Milestones

I think there are certain milestones that just kind of have more weight around the whole “being sick” thing, even when you are prepared for them. Losing my hair was confronting, wound care was breaking me down, and this was another psychological hurdle – because it is acknowledging that this process is taking a toll that I can’t deny, and I have to put additional structures and strategies in place to manage it.

Another one was acknowledging that I’m not safe to go walking by myself because of some of the side effects I am experiencing.

It’s humbling stuff, especially for someone who considers themselves to be pretty independent.

My solution is to try to arrange a treadmill at home so I can do it safely – rails and all.

In the end, we realised this was part of a much bigger issue in terms of how chemo impacted my nerves and connective tissue. This is something I am continuing to address through rehab to regain function.

Reiteration of boundaries (I keep mentioning them because people keep pushing them!)

⛔ If you aren’t sure what to say, please feel free to revisit the boundaries and frameworks that I am working with.

‼️My strongest piece of advice from this experience remains as follows; if you have cancer, and someone is not speaking from a place of lived experience or professional expertise, tell them that you need them to listen to you,to hold space, not give their opinion or advice.

My Oncology team emphasises that each cancer treatment and patient is so different, and the various surgical interventions, as well as other conditions, etc also have a huge impact and that one of the hardest things is often for the patient to avoid comparisons with other patients and to avoid taking on the advice of loving fools and well-intentioned idiots.

So… again, if someone with cancer is trusting you to speak of their experiences, diagnosis, side effects, or treatment.. just listen. Hold space. Be compassionate. Don’t share the stories of others. Don’t share stuff you have heard. Resist your need to fix, give opinions, and advise. Offer practical help. Listen to the language that *they* are choosing to use to frame their experience and adopt it.

Small example; people were talking to me about being on the downhill slope now.. and I couldn’t put my finger on why that was bothering me until I realise that for me, if something is trending downhill, it is going into decline! So.. yeah, we won’t be using that! For me, language defines frameworks and helps set and reinforce my mental and psychological state, so it’s super important.. for other people, they may not care.

Gratitude practice

🦋 I’m going to continue with my daily gratitude on Facebook… it helps.🌻

This strategy worked amazingly well for me. As someone with a history of depression, I was concerned about my mental health through this experience. Daily gratitude practice meant through the day, I would make notes on my phone for what I was going to share that night on Facebook. It helped keep me in the moment and with a mental orientation towards gratitude. It is possible to be miserable and sick and still practice gratitude. I would like to make a distinction between gratitude and toxic positivity.

The support I have in terms of social interaction with all my Beloveds through mainly text messages, video messages, memes, etc; absolutely the tapestry of love and care that I am leaning into daily and it is helping sustain me.

In hindsight

This experience probably started with me starting to get sick in September last year, the mammogram really kicked it off in early April with the first diagnosis on April 28th. So now, in terms of public knowledge, we are hitting the sixth month, and I am so grateful for the extraordinary kindness and generosity of my support network; and if you are getting this, you are part of that – sincerely, thank you, this has become a long haul, and much more complicated than I expected.

I was hoping to be done by September, honestly, so it’s a constant recalibration process and an exercise in remaining fluid even whilst being vigilant and disciplined with management, and so incredibly vulnerable emotionally and mentally.

I read this Cancer Journal 16 now, and go “oh you sweet summer child“. It’s a year later, and I’m only just well enough and have the physical capacity to start back at work in a very slow, staged plan.

Availability / Capacity

I don’t have much emotional capacity outside my own concerns, so my responses may be minimal, excessive, delayed.. or a wonderful combination of all three; may your Gods be ever in your favour!

It’s really important to me to acknowledge that apologies from Beloveds and associated guilt are not necessary – over not being ‘available’ due to lockdown, ill health, caring commitments, or just generally at capacity with life!

For me, it’s all about the love, and I understand being at capacity, and honestly? Discard the apologies, stop being mean to yourselves, and I will simply look forward to reconnecting when it is possible and appropriate!

I’m not a fan of the whole “oh when the chips are down, you know who your real friends are” bullshit. We’re adults, life is complicated, it’s not that simple, and I get it.

I also don’t want to be put in the position of having to make anyone else feel better about my situation, because my emotional capacity is really taken up managing it.

In summary (Cancer Journal 16/Chemo Edition 3)

🚩 if you, a family member, and/or a close work colleague have been sick in the last 21 days, I don’t want you to visit.

💉 If you haven’t been vaccinated, I don’t want to see you until I have finished Chemo completely and have had some recovery time.

❗❗I will be reiterating this individually to every person who offers to catch up post lockdown; I have in the past had people want to visit me when they and people close to them have been sick in the previous 7 days.

⛔ 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.

As I have stated in other blog posts, the various covid lockdowns in Melbourne had a massive impact; especially #4, #5, & #6.

⭐ This is the sixteenth 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.

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.