Hey! Hey!
Unlike most posts, I am going to start this one with a trigger warning of sensitive topics being discussed. My cerebrospinal fluid leak is significant, but not the focal point of this post. If you haven’t read navigating the CSF Leak waiting game, then make sure you have done before delving into this post.
Picking up where we left off …
We pick up where that post left off … Mom’s pancreatic cancer diagnosis.
It’s now Monday 19th August, and mom had been admitted to hospital for biopsies which would only confirm what we already knew. This day was a whirlwind, and to be honest, there are still gaps in my memory of the series of events.
What should have been a daycase procedure, had become an admission to the high dependency unit (HDU) after they discovered mom had an infection. The infection in question was never actually disclosed to us, but I later found out it was sepsis.
A CSF storm …
My head was accumulating headaches by the minute at this point. My original headaches that had been completely controlled by botox for the previous 2 years were back, my current postural headache caused by my CSF leak had me feeling like my brain was in my neck, and on top of that a stress shaped head pain was forming as I watched my mom suddenly become very poorly.
I had to get some relief from whatever headache was dominating my skull in that moment. I did not care how it was done, I just knew I could not be spending 20+ hours a day in bed like I had been. At no point did the (semi) rational part of my brain kick in and remind me that we had exhausted the symptomatic relief options.
Breaking the news …
After making short phone call and leaving a pretty incomprehensible voicemail for my favourite nurse, all I could do was sit and twiddle my thumbs in anticipation.
What I did for the following few hours remains a hazy, foggy blur, but what I do remember is the conversation I had with my favourite nurse …
It must have taken me close to 100 words, of which about 90 of these were sorry, before I managed to spit out the words mom has been diagnosed with terminal cancer and its end of life care. For the record, the phrase end of life care makes me physically recoil, so that was the one and only time I said it. Once the words had left my mouth, that was all it took to bring my every emotion crashing down around me. I cried a lot. I apologised even more. As she always had done, she listened to me, told me to stop apologising (I didn’t), and then said she’d do literally anything she could to help. I can’t remember how long she listened to me; it felt like an eternity, but in those moments I felt so safe. She stayed on the phone until I had calmed down, and whilst she didn’t know yet what they could do, she reassured me they would find something.
Back to mom’s diagnosis …
Mom remained in hospital to receive IV antibiotics for the infection (sepsis), and also for them to monitor her increasingly erratic heart rate. 72 hours after breaking mom’s diagnosis to my favourite nurse, she got back to me with the offer of a full course of cranial botox (30 needles into my head/neck/shoulders). It hadn’t been offered previously due to the lack of evidence of any substantial benefits, but as these were extenuating circumstances, they were more than happy to offer it. I could have these done literally the following week (grateful didn’t come close!).
That same week, mom met the gastro consultant who explained that the cancer had metastasized to not only her liver, but also her stomach and at best they could potentially offer chemotherapy palliatively. She also met her palliative consultant, who I must say was such a lovely lady. Incredibly softly spoken and very good with words.
Running on empty …
I was pushing my body to, and beyond, the absolute limits to do everything I could for mom. The reality was we would have at best 3 months which is nothing, and I was not prepared to waste what precious time was left because of my stupid leaky spine.
I went to the hospital every day with dad, gritted my teeth as I chatted to mom about anything and everything while my head and spine suffered pain on levels that under normal circumstances would have got me admitted.
At the end of visiting, we would go home and I’d cry myself to sleep each night through a combination of physical pain, furstration, anger and heartbreak. Then, I would get up the next day and repeat the whole cycle again.
Reality vs my CSF leak …
When mom was discharged, it hit me hard just how poorly she was. Like me, mom was an independent, incredibly stubborn person whose fully in-tact mind was now battling with a body that was failing her. I felt guilty every time I said I needed to lie down because I couldn’t cope with the pain. I was terrified to go to sleep because I was convinced that when I woke up mom would have passed away.
Spinal leak vs several head injections …
Stress of any form is known to worsen neurological conditions, and this was stress on an exceptional level. The more I tried to do to keep busy, the worse the leak headache became. The less I did physically, the worse the stress-induced headache became. I could not win.
I made the trip up to Stoke the end of that week to get my head jabbed what under normal circumstances I’d have labelled an unnecessary amount of times! However, just like when I was on the phone, in those few moments I felt so safe.
Mom had insisted dad came with me to get the injections done because she didn’t think it was right I went on my own (my mom had been to every injection appointment in the previous 2 years on the grounds she also thought the world of my nurse).
The irony of it all was despite the fact I had been the department celebrity for far too many years now, this was actually the very first time my dad had been to an injections appointment!
Head jabbed, a little explanation that pancreatic cancer rarely presents symptoms until it is untreatable, and an insistance that I call if I need anything at all, we were soon on our way back home.
Being all too familiar with cranial botox injections, I knew it could take up to 10 days to kick in, but deep down I was praying for some sort of miracle because any relief would feel like winning the lottery under the current circumstances.
Carrying guilt …
What I hadn’t told anybody at this point was the guilt I was internalising. The gastro doctor said they thought the tumour in mom’s pancreas had been there for 8-12 months, and despite my gorgeous nurse firmly assuring me that it was all to common to not have symptoms, I could help but think about the stress I had caused mom in the past 8-12 months.
If we looked back to 12 months before this point, I was in hospital undergoing extensive surgery for endometriosis which took me 3 months to recover from. Then, no sooner was I back on my feet post surgery, my spine started to leak and she had spent the following 7 months travelling backwards and forwards to Stoke on a near daily basis because of me.
Relief from the CSF headache, or just adrenaline?
Sunday came, and mom was declining rapidly. When she became barely responsive and even told my dad she thought this was the end, we called an ambulance immediately. With a blood pressure of 50/30, things were not looking good, and blue lights were the only course of action.
It was in that moment that it hit me my head wasn’t hurting as much. Arguing it out with dad that he should be the one to go in the ambulance with mom, I almost too casually commented that I was alright to drive because my head wasn’t even that bad!
Wasn’t even that bad …
I mean that has to be up there with Yeah, I’ve got a bit of a headache … back when this saga all started in January 2024!
To this day, I couldn’t say if it was the botox injections, the adrenaline, or both that triggered that all too nonchalant remark, but my goodness was I glad of even the slightest amount of pain relief!
Living a fever dream …
The following 12 hours were like a fever dream. Mom was taken into resus, prodded and poked, and hooked up to a cocktail of IV antibiotics and fluids. We saw an A&E ST5 doctor, who was brilliant at his job, a junior doctor on gastro rotation, who had the most incredible bedside manner I think I have ever seen, and then a more senior gastro doctor who explained that the next 24 hours were critical and would determine how long we had left with mom.
By the time they had mom stable enough to move to the ward, I was exhausted, and my head pain was beginning to increase. This was the longest period of time I had been upright for since it all began 8 months previously, so I was incredibly grateful for that. However, what I hadn’t accounted for in my adrenaline fueled state was that the injections were to try and block some of the pain in my head, not the pain in my spine.
Delaying or denying …
In spite of my rising pain levels, I insisted to mom on numerous occasions that my head was fine. To say I didn’t sleep much that night would be a minor (major) understatment because I was absolutely terrified we were going to get the call from the ward.
We didn’t get the call that night, so we were back at the hospital for 8:30am the next morning. When the on call consultant came round, he explained that the tumour in mom’s pancreas had grown and blocked the bile duct. This had resulted in the bile not draining properly and ultimately becoming infected (Sepsis … again).
He explained that they could do a gastroscopy and insert a stent to open up the duct and allow the bile to drain. This wouldn’t fix mom, but could give her more time. However, the procedure was unable to be performed due to the thinness of mom’s blood, and that it needed to thicken to reduce the risk of complications.
Very little happened over the next couple of days. Mom remained on a high cocktail of IV antibiotics, and we just kept being told her blood was too thin to perform the procedure safely. Starting to feel a bit like we were being brushed off, I decided to challenge the consultant and talk numbers.
This alone made him look twice and begin to question whether my background was medicine (I later pointed out that I am not medically trained, but do identify as a professional patient). He explained that they would give mom some vitamin K to help clot her blood, but insisted that the delaying of the procedure would not do mom any harm.
Still leaking CSF, but numb to the pain …
Throughout these days I was positive both the onset of the postural headache and the point at which it peaked were both delayed and I was beyond grateful to be able to sit by mom’s bed for a length of time I would have only dreamt about even as little as a week ago.
Unfortunately, the reality of almost 12 hours upright was taking its toll on my spine and the effects of gritting my teeth through the pain was starting to hit. Lying down at night was no longer sufficient to fully releive my spinal pain and on the rare occassions I did manage to fall asleep, any slight movement would sent electric shock type pains down my spine and inevitably wake me up.
48 hours passed and they still said the procedure couldn’t be performed, the only problem now was mom had started to become confused. Something was telling me this was not a good sign, but nobody was giving me a straight answer because her blood pressure, oxygen levels and heart rate were stable.
Friday evening, mom sat and completely finished a meal of steak pie and mash, and a dessert of ice cream … the most she had eaten since some point in July.
The inevitable was becoming a reality …
Saturday morning, and my pain levels were literally reducing me to tears to the point where dad insisted I stayed at home whilst he went to see mom, and if it eased, I could go up later and see her. My protests fell on stoney ground as deep down I knew dad was right, and the last thing he needed was me ending up in hospital an hour away in Stoke.
I made it to the hospital later that day, to be faced with a mom who was so confused she cowered away from me in fear. This image will remain engrained on my brain forever. The combination of the physical pain I was already in thanks to my spinal fluid leak and the emotional pain I was experiencing about mom was too much and I could not even bring myself to stay on the ward.
Getting ready to say goodbye …
The following day mom remained confused, but was aware of who I was. The difference this time was she appeared distressed. She repeated an almost incoherent sentence multiple times about my headaches. She was worried about my pain levels from sitting with her so for so long every day, and that I was going to cause myself damage.
In that moment, through tear-glazed eyes, I told her she didn’t have to worry about me because the injections into my head, neck and shoulders had worked. That I didn’t have a headache any more …
Whilst this wasn’t true, I am an absolute master at spinning a story and managed to put it across in a convincing enough way that made mom visibly relax.
Reality hit …
On the Monday, the on call consultant and palliative consultant explained that the sepsis was not responding to the antibiotics and that it was shutting mom’s organs down.
“but I still need her to hold my consultants accountable, and put the arrogant ones in their place” was all I managed to weep to the palliative consultant when she explained it was time to say goodbye.
I am 27 years old. I had a crippling headache thanks to a spinal CSF leak. I shouldn’t be being forced to say goodbye to my mom.
Mom passed peacefully on Tuesday 3rd September 2024.
I hope you are proud …
X O X O,
Your favourite headache x
Next time ~ the second opinion …
What am I supposed to do? If there’s no you? ~ Soon you’ll get better, Taylor Swift, Lover
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I can’t begin to imagine how difficult this must be for you. The weight of navigating your own pain while watching your mom go through something so heartbreaking is unimaginable. I hope you can give yourself grace in this.
💜😔heartbreaking on so many levels… sending love because words are rarely enough, Linda xx