& then cancer…

I don’t know how to approach writing this blog, I’d prefer not to, because oddly enough I’m a pretty private person. But it feels shady not to share, given how much I’ve shared in the past.

This week I was diagnosed with cancer. I’m not shocked, because it’s been four years of speculation. I’m ok with having cancer, I mean why should I be any different to any other person that has it.

But it’s feels like a lot because of my existing chronic health issues. I have always been staunchly against chemo, adamant that I would just choose death. But my surgeon asked if he could be honest with me and proceeded to tell me the way in which anal cancer would progress. It was not pretty. Really the only thing that scares me about cancer is the chemo and the unknown. So although I’m ok with the diagnosis, I am terrified of the treatment. I react badly to mild medication, even vitamins, let alone a cocktail of poisons. It’s almost like either way you are choosing death. Anyways the PET scan has been had (I should have the results tomorrow, which is scary as I have concerns regarding other symptoms). Then CAT  scan in a couple of weeks and the oncologist next week. So at this point it’s one day at a time, gathering the information then assessing. I don’t do well with the waiting thing, I need to know and I need to know now.

There are so many different facets to being diagnosed, many different doctor’s, but I am lucky to be able to liaise with my general practitioner often, It’s comforting and reassuring to have a constant who knows the whole picture, to turn to medically.

All this time it’s taken to find it only to be swept into a whirlwind of action. Seems like everything is moving so fast. No time to process, to pause, to take it all in.

I guess I did challenge the universe by daring to blog that I finally felt like I have come to a place of peace in my life. I’m still at peace but I would have preferred some time to really savour it. I am surprised at how I am dealing with the situation, once upon a time my health anxiety would have crippled me, but I think that was more a case of not knowing. Over the last few years a lot of my chronic issues have been diagnosed, as scary as that it is, there’s comfort in knowing.

I’m keeping a lil folder in my notes, where I express my emotions daily, I’ve always been a rollercoaster of ups and downs, so I need a place to just be fully honest with the day to day feelings. Because it’s not just mine that I need to consider. For a hot minute I was kinda like, this is about me, we don’t need to address how anyone else feels at the moment. And as true as that feels, it’s selfish. If I’m totally honest, I would have prefer to have just kept it to myself, but I know how I feel about others doing that, so I confided in my closest people, actually my only people. You can count them on two hands, they are few. But as strong as I am, or as I portray myself to be, I know that I will need to lean into those that I love. I’m not interested in an inspirational courageous journey. It’s going to be hell, if I even make it. It will be portrayed truthfully. That’s not me being negative, (ok, I do tend to catastrophize, but if you start at the bottom, it’s all up from there, right) it’s the reality of how the journey will be if I chose chemo. I mean it will still be shit if I don’t, but chemo guarantees that straight up. So it’s like I might only have a week or two of feeling my normal crappy before I, by choice turn my life into a living hell, and probably that of those closest to me. No part of that it’s a quitting attitude, I just don’t bullshit myself. Its very hard to find hope amidst the doom and gloom of what’s pending. Hard to motivate yourself, to partake in a daily life, that is being stripped away from you. Probably the time it should be embraced the most, but the battle between fear and hope is a lil paralysing. Fortunately my sense of humour and my sarcy attitude remain.

Just a few weeks ago, my partner made a pretty little potted garden right outside my bedroom window, with a little birdbath, fairy lights, and  pretty flowers and herbs. I love watching the birds splashing about and the butterflies visiting the plants. I spend a lot of time as it is resting, so it’s a really pretty outlook. No matter how I’m feeling I’m going to have that to look at.

I’ve also spent a lot of time over the last year just listening to different meditations each night before I go to sleep. I’m not so much into meditation, but I like guided meditations, just to try and still my mind a little and really focus on my breathing. I think it has been helpful in different areas of my life, but most surprising is that I have not been consumed with the type of anxiety you would expect. I’m just really trying to stay calm, as best as you can in stressful situations, and breathing through it. I really should stop googling though 💁🏻‍♀️.

But through it all I still feel the greatest sense of gratitude for all that I have in my life. There are people going through the same thing and far worse with way less than I am blessed with. I never forget that.

I’m not sure where the journey goes from here, I don’t want to saturate my blog with cancer stuff and I’m really not sure if I will be up to writing if I choose chemo, we’ll see. So I think I may just add to this blog here and there, unless a valid blog comes from the journey.

8th October 2024

Well it’s day 23 since diagnosis, and one hour since the ingestion of my first 3 chemotherapy pills. There will be an IV of another chemo drug today, followed by radiation and then another three pills tonight. All going well there will be another 28 days of radiation and pills.

Difficult to describe the feelings evoked by choosing to poison yourself in order to possibly save yourself. But here we are. It’s a bit like being on death row, awaiting the outcome, but the reality is, cancer already had me there.

After much deliberation I decided to share on my page. It’s a lil like when I shared the story about my mother. I didn’t want to put it out there, or to even put it into words, but I knew I had to. I really didn’t want to share this journey publicly, and I’ve been trying to understand why. It’s like I feel like I’m being waa waa me, or victimish, even though I know that’s not the case. I’m truly wondering why I don’t feel worthy enough to share my story and maybe allow myself support and collective prayers. Sad to not think myself worthy of that .

Anyways I did share, so that’s progress 😊

26th October 2024….

So here we are half way through. Mostly I find myself thinking about my past experiences in comparison to my present experiences.

A lot of things in life scar you. Turn you a little colder than you should be, than you used to be. It’s not necessarily that we have become hard hearted, well for me at least, it’s more that I  have a lil bit of a force field around me, a propensity to protect myself from unnecessary 🐂 💩 . Trusting in things that have proven to be traumatic in the past are now met with, yeah nah.

One of those things for me has been medical experiences. I’ve come across some Doctors and associated carers that have often been condescending, mean spirited and outright dismissive. To the point where the actions of a smart ass ER Doctor almost cost me my life. In these situations I was often intimidated. Which has over the years lead to medical trauma, phobias and an inability to advocate for myself in these settings. Many times I have come away feeling defeated, gaslit and sometimes even bullied.

That has been my experience, up until the last couple of years. Sure I still come accross the occasional issues, but it does seem like the tides have turned. Especially since my diagnosis. The team caring for me at the moment have shown a level of medical compassion that I’ve not often experienced, outside of a of long term physicians.

Also those that have been a constant in my medical history for the past 25 years have stepped outside of what I would say is normal practice. Almost in a familial way. During a recent crisis I was shown so much compassion that I was genuinely moved. The level of concern, not only for my physical situation, but my mental health as well, was the reassurance that I needed in that moment. In a way it helps to move past some of my ingrained experiences, to fade them into the background.

I hope to one day be able to show my appreciation to those that are getting me through this phase of my life. To somehow be able to convey how much difference that level of care made.

Given that I am at the halfway mark, the business end of my treatment I’ve no doubt that I will be leaning into those people again. And will be doing so with their encouragement, and an open ended invitation to call on them at anytime.  Even if it’s not necessary to do so, having that option is comforting when navigating the unknown. It helps to quell the fear and anxiety that can become all consuming when you feel there is no one to turn to. So having that option is comforting. Once treatment is finished, so essentially is the daily care, leaving you with the aftermath of a treatment that continues to treat for an extended period. Often leaving long term additional conditions to deal with. There’s no turning back from them as the treatment that kills the cancer, also causes much damage. Given how I am feeling already, I wonder how I might even get to the end of treatment, (I’m sure that’s a common feeling) let alone navigating future uncharted waters. The care will still be there, but having the daily access is like a safety net.

Then there is the possibility that after all this the cancer may return, as it’s triggered by HPV (human papillomavirus) in my system. It’s a common virus, there are many strains, most people never even know they have it, unfortunately I have a strain that causes a number of different cancers.

So the struggle is mental as well as physical.

It would be impossible to just remain stoic and not go down the many rabbit holes that ultimately lead to fear and anxiety. Add to that, you are constantly looking for information and tips that will help with the journey and recovery. There is a wealth of knowledge and experience from those who have travelled the path. However, with that comes the trauma of knowing the negative fallout.

I know there are so many others in the same boat, and I would encourage them with the same words I should give myself. In fact I did just make a comment in a cancer group to someone struggling with hope.

Note to self, take my own advice. I sometimes wish I was braver, stronger, less fearful, but I’m scared. Health battles are so personal and so unpredictable.

I was once a fairly social person, over the years, mainly due to my health I’ve become somewhat of a loner. It doesn’t bother me so much, I’m not lonely as such, it’s just hard to maintain friendships with unpredictable health. But there are a handful of people that remain in my life, that have also leaned in to make sure that I know that I am supported and loved. For me, these are the things in life that really matter when the chips are down. Even some people from my page have reached out to check in. And those in support groups always happy to extend an encouraging hand. One lady from the UK and I were on a similar timeline, so we keep in touch. Kindness, when it’s a choice is next level in my world, it gets me through.

I’ve no doubt the next few weeks/months will be rough, my body is starting to protest.  But as always I am grateful for the blessings in which I get to navigate my journey.

15th November 2024

Well yesterday was my last day of treatment. I missed my last three doses of chemo pills as they were causing a rash and crazy itching the last few weeks. But apparently they often stop people early due to side effects. Some people have no side effects from them at all. I was not some people. On a couple of occasion I told myself that I’m not taking any more of those tablets, they can fuck right off. Only to take the next dose when due. No conviction 🙂. The treatment as a whole was not as bad as I had envisaged. It was no walk in the park, but not the gruelling picture I had painted in my head. There were probably three days that I needed a pep talk from this one kind oncology nurse. I’d seek her out, I liked her she was firm yet soft. I can’t imagine how many people she would have to talk of the proverbial ledge, yet she did it as though each time was the first.

It really is a one day at a time kind of experience, because one day you feel so bad you swear you can’t do this anymore, and the next day it’s like, oh this isn’t so bad. Also my radiation treatments were early in the morning, for which I had to drink two litres of water, I think the water really helped with dehydration for the rest of the day.

There were often times when I would sit in the waiting room watching people come and go for chemo or radiation. Elderly people, frail people, healthy looking people, and I couldn’t help but hope that they all had someone or lots of someone’s to care for them. I can’t imagine getting through it on my own. I often read in groups about those that had to continue working, looking after their family, or get themselves to treatments. I felt guilty that I relied so heavily on my partner and ex husband (we are friends, flatmates) to get me to appointments. There was always someone with me throughout the days, I never wanted for anything. My partner went above and beyond. I will never be able to repay or express my appreciation for that level of care. I also had a long time girlfriend constantly checking in and helping to keep me on track, helping to keep life normal.

I was advised the next few weeks the treatment keeps doing its thing and it gets worse before it gets better. But I am just so relieved to have made it this far. My stubborn nature was adamant that I would finish the treatment, but I was also fearful that I might not tolerate it. I know there is a ways to go and that there might be some long term damage, but I’ve made it this far 🙂.

I did find myself a few times feeling resentment towards my mother. Although I couldn’t have had better support, a daughter always wants/needs her mother in times of crisis. Because of her vindictiveness, I had no familial support. I understand given the circumstances it was not an option, and even if offered, I would not have accepted. But that doesn’t change the fact that you still want your mum to be there for you. Going through another life crisis without family, only serves to strengthen my resolve to never let my guard down where she is concerned.

So that’s the update, I’m still here to tell the story and as always grateful and blessed…

12th December 2024

Almost a month out from treatment. Had a few complications, and a trip to the ER. Anytime you have a fever after treatment it is considered an emergency, as infection can take hold rapidly. I have yto say I was treated like a VIP, apparently that little treatment card you get to present to hospitals has some clout.  It was just a short over night stay. Nothing sinister was found, but broad spectrum antibiotics were administered as a precautionary measure. Strangely enough the fever put an end to an incessant all over itch that had been intensifying and testing my sanity for a few weeks. Nothing alleviated it. Then boom, it was gone. I think it was from the chemo.

Now comes the time to see what the fallout will be from the treatment. Already I have some issues that are causing some problems. But it’s a waiting game, eventually I guess it all settles into a new normal and you deal accordingly. I’ve read enough to know that it is inevitable.

As a person who has lived with chronic illness, you always have this slight hope that at some point you may regain your health. I no longer have that hope. I don’t say that in a defeatist way. It’s just that having cancer and doing the treatment, there’s no turning back from doing that to your body. The reality is, ultimately at the very least you will end up with more health related issues, and possibly the continuation of the cancer. It’s just a reality check that there will never be a return to healthy me. Nearly four decades later and I was still holding out hope. There’s still hope, it’s just a different type now.

But still there is gratitude 🙂

4th March 2025

I am happy to end this blog with a positive result. Recent scan confirm no cancer present. There will be vigilant testing every three months for the next two years, as if this cancer is to return it is usually in that time frame.

I surprised myself by even getting through the treatment, so everything else is a bonus…