After a week filled with mind blowing news, tons of testing, emotional roller coasters and coming to terms with my diagnosis, the waiting started again. The waiting for my cancer treatment, that is.
Thank goodness the liver ultrasound showed that there were no metastasis and that my cancer hadn’t spread. All the other blood tests showed that apart from the tumour in the eye, I seemed to be free of cancer. At last some positive news!
In light of recent events, this was absolutely fantastic and gave me a real lift. The other good news was that I had got an appointment with one of the world’s best ocular oncologists in Liverpool. Because my condition was so rare, there were no treatment options available for me in Ireland.
But it was summer and things were slow in the oncology world.
I know why this time of the year always gets super busy for me now that I work with cancer patients… recently diagnosed people have to wait a lot longer for their appointments with an oncologist and start looking for alternatives they can do in the meantime.
For me, however, searching the internet wasn’t really an option as the flickering in my eye had gone quite bad and was making me queasy. I found it hard to focus on the computer screen or even watch TV, which made me increasingly frustrated. The little time I spent online didn’t really help lift my spirits, on the contrary!
The statistics on average life expectancy with ocular melanoma made me feel everything but optimistic, the side effects of treatments sounded dreadful, there was no decent information on how you can kill time when you’re waiting for treatments and a biopsy (honestly, sometimes you just need super practical info, don’t you?)
In short, all I found was daunting, negative stuff that I certainly didn’t need at the time
Oh well, and that was when my husband decided on my behalf that online research was doing nothing for me (although I don’t like to be told what to do, I’m still grateful for that ;))…
So I was much better off not knowing that malignant melanoma is, one of the deadliest forms of cancer, especially if it spreads.
So the waiting game started again. I tried to fill all this free time- I was on sick leave- with activities that I liked but still it felt like the longest three weeks of my life.
Arriving in Liverpool and Preparing for Surgery
When we finally arrived in Liverpool three weeks later, I nearly did a U-turn when we got to the hospital.
It was a very dark, tall and intimidating building and when I saw it, fear immediately welled up inside me.
When I arrived at the eye centre I had to do every single test again that I had already done in Dublin. So frustrating and exhausting. I also had to prepare for surgery for the following day so that I could start radiation plaque therapy, a process where a disk is attached by sutures to my eye. It was a custom-made plaque designed to point radioactive seeds at my specific tumour.
It dawned on me that I had lived in blissful ignorance for the previous three weeks and that this radioactive treatment would probably be a lot harder than I had imagined. Not only was I going to have surgery under a full anaesthetic twice within four days, but I would also have to put up with the pain and isolation of having a radioactive plaque inserted into the eye.
The night before surgery I was allowed to leave the hospital and I remember going for a really nice meal with my husband in a Spanish restaurant. Life almost felt a bit “normal” again. I even had a bit of red wine to calm my nerves and help me sleep.
Sleep was quite a rare commodity for me that week in the hospital because I shared my ward with seven other patients, most of which were diabetic patients. This meant that a nurse would come in all night every hour, switch on the main light and check the other patients’ blood sugars. What a great way to prepare for and recover from surgery!
Surgery and Radiation Plaque Therapy
Surgery the next day apparently went well and was performed by the professor himself.
When I woke up I felt like a boxer after a (lost) match. I was dragged out of bed pretty early the following morning to do some tests to check whether the radioactive plaque was in the right place.
They also told me that as I might have double vision for a long time because they had to detach the muscles from my eyeball. Lovely! Although I warned the team that doing eye tests before breakfast (I wasn’t very good at handling my blood sugars at the time, especially the fasting ones…) might not be a good idea because I faint easily (especially when there are stitches pulling on the back of my eye when I have to move it around), they decided to go ahead.
My husband, who arrived early while I was doing the tests, was literally able to catch me before I passed out completely!
That’s when I started to get slightly annoyed with the fact that I was apparently treated like a little child… everybody seemed to know me and my body a lot better than myself although they had only just met me 2 days earlier.
I’m really not somebody who enjoys making other people’s lives more difficult, and especially not if they work in a super busy hospital, but a bit of respect and listening to my needs would have been appropriate
Ah yeah, and after my semi-fainting episode, one of the nurses convinced himself that I certainly must have diabetes, or at least be in a pre-diabetic state because of my poor blood sugar handling. They subsequently also did all those tests on me.
We were sort of wondering for a while which would be more of a pain in the neck to handle- cancer or diabetes? But all the tests came back negative and I thanked the nurse for boosting my stress hormones
Anyway, I couldn’t really do much during the 3 days where I had the radioactive plaque in the eye and I honestly can’t remember how I managed to kill time.
There was lots of hustle in the ward all the time and I made friends with one of the other patients. The sun was shining most of the time (typical, otherwise it’s never there when we need it) and because I had a plastic guard over my eye for protection, I started sweating quite a bit around the eye and developed a red, itchy rash.
It was terrible- all I wanted to do was have a good cry because not only was I in discomfort, but also felt constantly itchy (and they weren’t allowed to give me antihistamines because that could have interfered with radiotherapy), uncomfortable and just miserable. But even crying wasn’t an option with all that was going on in and around the eye.
The only consolation was that everybody in the ward was in a pretty dire place. I was the only cancer patient but there were others in for surgery for glaucoma, cataracts and other eye- or diabetes-related ailments.
One older lady in particular had a very tough time: She had to sit and hold her head down onto a pillow for most of the day to avoid pressure on the eye. She was so old and fragile and I sometimes went over to give her a back rub.
Compared to her, my journey almost seemed like a walk in the park. I didn’t take any pain killers and actually managed really well without. My eye are was sore as you would expect, but I only had real pain when I moved my eye and I felt the stitches. And it was only for 4 days, after all… isn’t life just a matter of perspective sometimes?
Removing the Plaque
Removing the plaque 4 days later was a procedure I won’t forget easily. My surgery was planned for the morning and I had to fast, but so many emergencies happened that I was still in my room at 4pm, getting weaker and feeling faint once again.
I felt dehydrated, was starving and the prospect of having another general anaesthetic didn’t really cheer me up.
When the nurse came in and said there had been another emergency and my procedure was delayed by another hour, I mentioned that the next emergency might likely be myself! She looked at me, checked a few thing in my file, dashed off and 5 minutes later I was on the way to the operation theatre.
I wonder whether she read about my fainting episode?
Anyway, after surgery I had to stay in the recovery room for a long time because my body temperature had dropped to a dangerously low level. It took me ages to properly wake up and I don’t think I’ve ever felt weaker and more vulnerable in my whole life.
I was due to fly back to Dublin the following day but still wasn’t allowed to eat “in case I’d have to throw up”. Even though I explained to the nurse that I was feeling extremely weak and needed something a bit more substantial than a tiny piece of dry toast so that I’d have the strength to go home in less than 15 hours, there was no way of convincing her.
Then there was a shift change and the night nurse turned up. My husband talked to her and she begrudgingly agreed to him bringing me some white rice and vegetables into hospital.
She warned him that he’d have to come and tidy up in case I vomited though, so he gave her his mobile number- thinking it was a joke, but I still think she was serious about it!
Anyway, it was the BEST rice I’ve had in my whole life and I ate very slowly, just little bites every 15-30 minutes. Even at night I’d wake up at least once an hour to have a little bit of food and in the morning I felt much better.
Still very weak, but I was confident that I’d make it back to Dublin on the plane. Of course I didn’t have to throw up (I have a pretty robust stomach, contrary to what the nurse believed) and if we hadn’t insisted on me eating something, I doubt I’d have been able to travel back home the same day and recovered.
Step by step through all those hospital experiences, I learned to trust my body and instincts. I realised that it was important to stand up for myself and become more confident in defending my choices. But I was still a long way from taking control.