What I shared on Facebook on Thursday 09th September 2021 as my Cancer Journal 15.
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 15⭐
☣️ Chemo Edition ☣️
Thursday 09th September 2021 (15)
First Chemo was the 19th August.
Second Chemo today; 09th September.
So although I still have to get through my wobbly week, as of today I’m halfway through my actual chemotherapy infusions.
Third Chemo AM 30th September.
Forth Chemo AM 21st October.
Preparation for Chemo
Blood tests were done yesterday in preparation for Chemo today; if my results aren’t in an appropriate range, chemo will have to be delayed, and other interventions may have to be considered. Due to restrictions, I also have to have a covid test before chemo so that’s clear as well.
My oncologist told me today that my bloods are perfectly medically boring, and I told him that that’s exactly what I want to be.
The first cycle provides the blueprint apparently, and I’ll be honest, day 4 through to about day 12 was pretty fucking awful.
Hopefully I will be able to manage it better this time around.
Just reading this, I feel fatigue wash over me. Is it just me, or can you, as someone reading this for the first time, discern a noticeable difference in energy levels?
Availability / Capacity
I’m not that available in the mornings or the evenings, so the best time to make contact is afternoon, otherwise, there may be a delay in my response.
No offence, but just because I am on social media doesn’t necessarily mean that I have the capacity for dialogue… social media is a low-demand environment for me, but when it comes to texts or messages, I will respond when I have the capacity.
Side effects Cancer Journal 15 – second chemo
Side effects so far are:
- Sleep problems
- Hair loss – everywhere.. except the hair on my arms – that seems to be holding up so far. I lost probably 75% of my head hair last night in the shower.
- Taste changes
- Blood noses
- Bruising easily
- Brain fog
- Bone + muscle + nerve pain
- Odema (swelling)
- Slow healing
- Compromised immune system
❗ menopause is a given
The hair loss was SO weird. I was sitting in the sun in my backyard, and it was about 3:30 pm. It felt like my scalp just crawled, and somehow, I just *knew* that was my hair letting go. I had already shaved my head in preparation – I can’t even imagine how confronting it would have been if my hair was still down to my hips.
Reiteration of boundaries (yes, they’re important to me)
⛔ If you aren’t sure what to say, please feel free to revisit the boundaries and frameworks that I am working with.
🚩if you are ever in the position to be speaking with someone living with cancer, facing various treatments, DO NOT try to tell them “oh, that might not happen” or “just wait and see”, or ‘just be positive’.. seriously.
If I was not prepared for my hair to fall out, it would have been quite distressing. As it was, it was weird and somewhat confronting.
Advice from my lived experience
My strongest piece of advice from this experience; is if 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.
I cannot tell you the number of people with no fucking idea who told me.. “oh, don’t worry about it, it may not happen”. They had no lived experience of cancer but because they were uncomfortable, they wanted to deny it – it was in no way helpful. This is another example of loving fools / well-intentioned idiots. Those terms might seem harsh, but the damage people can do when you are sick and vulnerable simply cannot be underestimated or ignored.
If you are not the person with cancer or undergoing treatment, and someone is trusting you to speak of their experiences, their 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. Do not seek reassurance or comfort from the person who is living the experience – support in, dump out.
🦋 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.
In summary (Cancer Journal 15/Chemo Edition 2)
🚩 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.
⭐ This is the fifteenth 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.
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.
Related blog posts
- Fuck Cancer
- Friday 13th August 2021: Cancer Journal 14 ~ Chemo Edition
- Haunted Temple, Sacred Vessel
- Friday 06th August 2021 (Cancer Journal 13)
- Friday 23rd July 2021 (Cancer Journal 12)
- The hospital week: first week post-surgery
- Wednesday 14th July 2021 (Cancer Journal 11)
- Sunday 11th July 2021 (Cancer Journal 10)
- Monday 05th July 2022 (Cancer Journal 9)
- Monday 21st June 2021 – Surgery Date (Cancer Journal 8)
- Plaster Cast
- Thursday 03rd June 2021 – the worst meltdown
- Sunday 30th May 2021: Cancer – telling your colleagues
- Friday 28th May 2021 (Cancer Journal 7)
- Friday 28th May 2021 Plastic Surgeon
- Wednesday 26th May 2021 Cancer Clinic
- Tuesday 25th May 2021 Left Breast Diagnosis
- Friday 21st May 2021: Biopsy, Left Breast
- Tuesday 18th May (Cancer Journal 6)
- Monday 17th May 2021 Arranging the biopsy
- Saturday 15th May 2021 (Cancer Journal 5)
- Wednesday 12th May 2021 (Cancer Journal 4)
- Friday 07th May 2021 (Cancer Journal 3)
- Cancer surgeon
- Sunday, 02nd May 2021 (Cancer Journal 2)
- Saturday May 01st 2021 ( Cancer Journal 1)
- Facebook post
- How to tell people you have cancer.
- Deciding strategies
- The Camus Question of Choice
- The Follow-up Tests
- The phone call.
- Check your breasts