What I shared on Facebook on Friday 06th August 2021 as my Cancer Journal Number 13.
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 ⭐
Friday 06th August 2021 (13)
Good news – my PET scan Wednesday was clear!
I cannot emphasize how very real scanxiety is; the idea that they are going to find more cancer, that the cancer is back – it’s an insidious dark siren song in your psyche.
On Wednesday I also had the wound clinic (they are happy with the healing so far, but I was reprimanded for how heavy my bag was), and then I met with the oncologist, Dr. Richard de Boer.
The wound clinic was something that started on the 28th of July. I attended weekly initially; 4th August, 11th August 18th August, and then fortnightly; 1st September, 15th September.
The wound clinic nurse was *amazing*; she helped me so much. She was so gentle and compassionate and empowered me to care for my surgical wounds. Due to the chemotherapy, my surgical wounds didn’t fully heal until about February – more than three months after finishing chemo, and over seven months post-surgery.
One of the big takeaways from this session was how individual and multifaceted breast cancer is.
Cancer and treatments are individual and multifaceted.
‼️So word of warning – whilst there is commonality, be very aware that breast cancer patients and treatments vary significantly, and don’t assume, judge, project, or advise. It’s hard enough without people trying to tell me what is best for me. I’m vulnerable, and bullshit can and does play on my mind; I have to have a zero-tolerance policy in place for my well-being.
The Oncologist and the Oncology Liason Nurse both acknowledge that this part of the treatment is absolutely about managing the mental/psychological aspects of the treatment.
Starting Chemotherapy: Cancer Journal 13
⚠️ The plan of action from here is that I will start chemo on August 19th.
They want to give me a little longer to recover from surgery before we start the next phase of treatment.
I accept, based on my profile, family history, and the profile of the cancers I have had removed, that this is the most pragmatic approach to ensuring that I don’t develop more cancer.
I’m more resigned to it, decided about it, and I acknowledge that I am both dreading it and I’m frightened about the impact of the treatment physically and mentally, despite being confident in the wellness team I have.
It will be four sessions of chemo, spaced three weeks apart.
Gentle Creatures, he warned me that I will be very sick for at least a week after chemo, then the second week will be better, but still not great, then the third week will be ok, then I will be due for the next dose. Rinse, repeat.
Each time, it will be harder to recover.
The Oncologist said halfway through, I will want to quit.
He advised against working (especially given what I do for a living) and also advised that I need to consider recovery time once the chemo is finished, which will be the end of October.
Most likely side effects are:
- Hair loss
- Taste changes
- Nail changes
- Weight gain
- Brain fog
- Bone + muscle + nerve pain
❗ menopause is a given
Rare side effects are:
- Neuropathy (nerve damage)
- Severe illness
We did not anticipate how sick I would get; it was well managed, and I had a great wellness team, so I was very lucky. I did get all the usual side effects, and then some.
The neuropathy aspect has meant that I have needed regular physio, and then, when I was well enough, remedial pilates as well, in order to regain function. I still have altered sensation in my hands, and both altered sensation and lack of sensation in my feet and up as far as my knees. I have done fine motor skills therapy, cognitive therapy, speech therapy (my hearing was also impacted due to the nerve aspect). My connective tissue was massively impacted, meaning that I have had significant issues with sublaxing (partial dislocations).
My oncologist has advised that permanent deficits cannot be fully assessed until 12 – 18 months post the end of chemotherapy treatment; that will be November 2022 – May 2023.
Progress plan Cancer Journal 13
However, it gives me statistically better odds of not developing cancer again in the next 5 – 15 years.
I’m continuing to work with my GPs and with a psychologist. The psych suggested the reframing of “delicate and slow” for one week out of three, so I am working on that.
Another friend has suggested that I view this experience as a recalibration, which is also a framework that I think is going to help.
‼️ 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 (Simon and the cats).
🚫 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.
‼️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 in time.
📍 I have pinned the post with the announcement about my diagnosis and the boundaries I want to work with, so if this post is the first you have seen, please refer to that pinned post.
⭐ This is the thirteenth 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.
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
- 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