What I shared on Facebook on Sunday 24th October 2021 as my Cancer Journal 17.
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 ⭐
☢ Chemo Edition ☢
Sunday October 24th 2021 (Cancer Journal 17)
Post Forth and Final Chemo ( 21st October).
- 19th August
- 09th September
- 30th September
- 21st October
Final Chemo done and dusted!
Gentle Creatures, I have had my last chemotherapy infusion!
I’m so thrilled! Whilst I accept that the next 3 – 4 weeks are going to be a write-off as my body goes through the process of dealing with the side effects. I now have my eye turned to November 11th.
If I was having more chemo, that is when I would be having my next infusion. Therefore, to me, that’s the end of the chemo treatment aspect of this cancer experience.
Realistically, if the last cycle is anything to go by, I will probably spend one of every three days, if not more, in bed either actually sleeping or just resting. The side effects continue. However, I think my management strategies will continue to mitigate them. In the mean time, I still have the backup of my Wellness team, including the after-hours number (which I have used already) if the symptoms become exacerbated.
Next steps: Cancer Journal 17
I tentively have my Oncology review on December 02nd. There is a plan to start endocrine therapy then. However,my Oncologist told me that if I don’t feel like I have recovered enough to start the next cycle of treatment, he’s happy to push it out a couple of weeks to give me a bit more recovery time.
By the end of chemo, I was so sick, I didn’t start endocrine therapy until January 2022. Technically, I remain a cancer patient for the next ten years. This is because I am under active treatment and monitoring for the next decade.
I have my Genealogy Review on the 13th December. At that stage, they should be able to give me some guidance around whether I need more tests. Additionally whether further, preventative surgery is appropriate. It is entirely possible that I may have to consider the removal of appendix, ovaries, and uterus.
This was not the case, and I am very grateful.
Fatigue and other side effects
Beloveds, I am fatigued.
Some of my side effects leave me very unsteady on my feet. I am only able to eat very small meals, of simple food. My sense of taste and smell is impacted, there is some periferal neuropathy in my hands and feet, I have nerve, muscle, and joint pain. Additionally, I have intermittent lymphoedema, and the nerve aspect is also impacting upon my hearing and balance.
I have to monitor my digestive function and bowel movements very carefully. My skin is very fragile, I bruise, I bleed, and I still have to be very cautious of infections. I get hives and rashes, and I have to be careful of the sun and of heat.
My surgical wounds are still healing, and I still have altered sensation down my chest and abdomen.
Additionally, my cognitive function is impaired, and there’s some hopefully temporary vision and hearing impact on top of that.
I get regular nose bleeds as well, and I experience breathlessness, and I have to stop and rest often.
Strong smells make me nauseous, and loud noise / noise of certain pitches give me headaches.
I’ve lost pretty much 95% of all hair, if not more, and I’m losing my eyebrows and eyelashes now too.
I’m not really that great before noon, and often I don’t have the energy for conversations. At this stage, I’m not driving. I’m not safe to go walking solo – or even accompanied, given the fatigue, dizziness, vertigo, and breathlessness.
It’s a lot, and it’s confronting, not going to lie.
This is my current reality, and I’m being brutally honest about it because I need people not to be shocked. I feel like I have aged 5 – 10 years, to be honest.
After November 11th, I’m hoping to be a bit better. I would love to start seeing people. Especially if friends are willing to pick me up and just take me to a park or the beach or a Cafe with outdoor seating. I’m probably only going to be up to brief afternoon outings for a while.
Guidelines: Cancer Journal 17
My guidelines around this are going to be as follows:
🚫 I don’t really want to be in enclosed spaces with people. Therefore, shopping centres, theatres, art galleries, restaurants etc aren’t really going to be on my agenda until after the new year I suspect.
🚩 Ifyou, a family member, and / or a close work colleague has been sick in the last 21 days, it places me at too much risk.
💉 If you haven’t been vaccinated, it places me at too much risk.
❗❗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.
Melbourne had come out of lockdown on October 21st 2021; and people were so keen to return to ‘normal life’. I don’t think there is such a thing for cancer patients honestly. We have a new normal, but life is undeniably changed. When I was diagnosed, the nurse told me that this experience changes everyone and that I needed to accept that from the outset; she also said a lot of it was about my mindset, and I think that is also very true.
I’ve got a medical certificate until early March. At this time, I am still pursuing my income insurance claim. So my focus overall is firstly, going to be about recovering from chemo. Secondly, starting endocrine therapy (and dealing with the impact of that). Thirdly, trying to regain my health and fitness to the best of my ability.
I need to arrange the damn treadmill. Once my surgical wounds are healed, my physio is going to be putting together a hydrotherapy program for me (once hydro pools are open). My physio isn’t going great guns due to the raft of side effects I am dealing with. But I’m ever the optimist, so we will see how I go over the next three weeks. Cognitive therapy is ongoing.
I did cognitive therapy for about nine months, and then started writing again on this blog (which also counts). I cannot imagine what I would have been like without it, to be honest.
A podartrist was consulted. I worked with a lymphodema specialist. Additionally started working with my own physio in February, did speech therapy, and did fine motor skills rehab.
I haven’t been able to go swimming or do hydro yet. Twelve months later, I still have toe nails that are lifted from the nail bed. Therefore, the risk of fungal infection is too great.
Ongoing work with a physio has been vital and continues to be key in my ongoing recovery. The chemo impacted my connective tissue and my nervous system massively; I’m still sublaxing in my ribs and spine regularly, and we have only just got my pelvis to stop twisting and tilting. Because of the pelvis and hip issues, we have had work a lot on gait correction. I am not yet cleared for exercise bikes or even walking on inclines or uneven ground.
‼️I’m going to reiterate the boundaries I wish to hold to. These are consistent from when I was first diagnosed.
This is not a criticism of anyone for whom these following 5 points have been helpful. Nor is it an invitation to explain why it worked for you or those you know. I am just requesting these boundaries be respected in my process.
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. Whilst I appreciate everyone wants to share a success story in encouragement. If however, it isn’t your lived personal experience, I invite you to consider that this is not the space. For every success story, there is someone grieving, a number of whom I have deep, personal connection with, 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. Ask yourself if it something that I need to hear. Or perhaps it is just something that you feel the need to say because this is uncomfortable.
Linguistics and 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, those have been my more holistic goals for this experience to date, and continues to be something I am aiming for.
Choosing my language became such an important part of choosing my outlook, and ultimately, supported my mental health.
And don’t even start me on all the ridiculous nicknames and slang for breasts! People started to address my breasts as separate entities which I have never done, and it was quite confronting. When I was particularly vulnerable, it made me upset and angry. There was so much focus on my breasts instead of on my cancer or on me.
This was important to me as a trainer and a communicator. I have a collaborative approach to life. Engaging with active and compassionate curiosity is always one of my goals. In the aftermath of the diagnosis, as I walked away from the appointment, I honestly felt that I needed to ensure I used my skills to create a legacy of sorts. I don’t think we have good models for how to talk to other people about being sick, chronic illness, or death. Culturally, our models in Australians of UK heritage remain aligned with the idea of stiff upper lips and not talking about unpleasant things. It’s not healthy, and I think we can do better. So I could see an opportunity and an obligation to walk my talk.
If any of this is problematic for you, I invite you to consider the wisdom of stepping away from this space and tending your own garden. I do not have the emotional, spiritual, mental bandwidth to negotiate the needs or wants of others that don’t align with my current experience.
⛔ I don’t have much emotional capacity outside my own concerns. My responses may be minimal, excessive, or delayed.. or a wonderful combination of all three. May your Gods be ever in your favour!
Apologies not necessary – you either have availability / capacity or you do not.
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!
The whole “oh when the chips are down, you know who your real friends are” bullshit? Not a fan. 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.
I am intent upon continuing with dignity, grace, and compassion, but with these boundaries in place.
⭐ This is the seventeenth 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: Cancer Jounal 17
- Counting the Days
- Sunday 03rd October 2021: Cancer Journal 16 ~ Chemo Edition
- Milestones along the way
- Thursday 09th September 2021: Cancer Journal 15 ~ Chemo Edition
- 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