This is Ailsa’s fiance, Nick. Ailsa had started writing this blog entry, which she was never able to post. As promised, I am doing this now, and have added some notes of my own at the end. Ailsa wanted to share her experience, so I think it important that this is posted.
I haven’t written a blog for a while. Since the last one I had my final dose of chemo, that was on the 4th January. After that it was time for a scan to see how things were going. Since we got encouraging scan results half way through we had quite high hopes.
However, a couple of weeks after the chemo I started feeling rather rough. Previously I had had some bad stomach pain which they thought was because of taking too much ibuprofen, this seemed to resolve itself with some drugs. However, after having my scan, and waiting for the results, this stomach/abdominal pain started to come back. I think when you’re ill, every little ache and pain puts you into a panic, so I was trying not to think the worst. The pain just kept getting worse though and eventually I got to see the GP - she examined me and told me she thought it was my liver- and that probably the cancer was growing back and causing it to swell.
This was a huge blow for us, if the liver cancer was growing back it probably meant it was growing in other places, and that the chemo had stopped working. They put me on steroids which helped the pain, but we still had to wait to the official scan results for confirmation. Sure enough, my appointment at the hospital confirmed the cancer mets in the liver, lungs and stomach lining were coming back.
Of course we knew this would happen eventually, it was an incurable diagnosis, but we didn’t expect it to happen so soon.
The doctor started to mention other treatment options, but it was all a bit overwhelming at the time, so we don’t have that many details. There is one chemo option but has a low success rate and is pretty aggressive, so they only put you on if you’re well enough. The doctor seemed to think I’m borderline at the moment but we’ll find out more in the next week or so. There is also the option of clinical trials, but they also obviously have a unknown success rate and you have to be suitable to take part.
After the scan there were some dark days, it felt like it was all going wrong and we were out of options. It was also bad timing because it was 3 weeks until our wedding, and I really want to be well for that. It didn’t help I was still feeling very ill.
We got the results on monday, but on true form by Friday my brain started to adapt, and realise that’s it’s not the end! There is plenty of time to enjoy life, day by day. The future is scary but the present is what matters for now.
For now I want to see as many people as possible and hear from as many people as possible! I want people to say all the things they want to say, remind me of nice memories and generally make me feel happy!
As I said I’m not very well at the moment, but I’ll try and do as much as possible!
This is as far as Ailsa got writing her blog - I’ll attempt to finish the rest from here. I won’t post all the details, but I will describe quite a lot; this feels appropriate since she had been so brutally honest in her previous blogs about everything that happened to her throughout her illness. If you don’t want to know, then this might be a good place to stop.
Ailsa had some notes about what else she wanted to include in this blog. Firstly, that the wedding was to be enjoyed and not to focus on the future too much.
Secondly, she had also started looking into getting a new wedding dress. In the final two or three weeks or so, Ailsa started showing signs of swelling in the abdomen; so much so that there was no way the wedding dress was going to fit, which of course was upsetting for her. Her GP had suggested that this might be due to a build up of fluid, from her liver, that she was unable to get rid of.
She visited the hospital to have the fluid drained, only to find that they couldn’t identify a sufficiently large region of fluid away from other organs, which would have risked damaging them had the drain gone in. They suggested that she come back early in the week before our wedding to try again - she was hoping that losing the fluid would help her fit into her wedding dress again.
By this time, she had become very tired, having to sit and rest a lot. Just walking up the stairs would tire her out. The swelling was causing her a great deal of discomfort - she could only sit bolt-upright (not that this was comfortable) and prevented her from sleeping properly for several days in a row. Over the weekend before our wedding, she really crashed, spending almost all of both days in bed. I had put this down to her needing to catch up on sleep, but in hindsight, it was probably an indication of what was coming.
On the Sunday afternoon, I had become concerned about things Ailsa was saying and doing. She was in a real state of confusion, sufficiently so that it seemed like more than just sleep deprivation. She was saying things that ranged from the subtly odd, to the sorts of things that people say in their sleep. That said, she was slipping in and out of ‘sleeping’ almost instantaneously. She had also started to appear a little jaundiced. Worse, when I went to take her to hospital she began looking for her car keys to drive us - I was worried that she might have become a danger to herself if left alone.
The doctor immediately recognised the signs of a faulty liver, saying that the confusion was caused by a build-up of toxins. We had a couple of days to wait until the appointment for the drain - which might have helped remove the toxins. the doctor advised us to head straight to the emergency department at the JR hospital to have someone look at Ailsa.
The doctors and nurses at the JR were very helpful and considerate, and better yet it looked like Ailsa was ‘waking up’ a bit, being able to answer all the doctor’s confusion-testing questions pretty well. They carried out a CT scan of Ailsa’s brain just to make sure there was nothing more sinister than toxins and suggested she might be able to have the drain now, knowing that she wanted to be feeling good for the wedding on Saturday.
After some blood tests, the doctors’ recommended that Ailsa be moved to a ward over the road at the Churchill hospital - the centre of excellence for cancer treatment, where Ailsa had spent most of her time before.
Ailsa was looked over by oncologists who understood the nature of the situation. When inspecting Ailsa’s stomach, they found that while there was a lot of fluid present, much of the swelling was actually tumour. We also learned that her CT scan revealed the cancer had started to spread into her brain. This wasn’t the cause of her confusion; the cancer was too small to have started to have any significant effect, but this goes to show just how aggressive it was.
It was at this point that we all knew Ailsa would not be leaving hospital again. In just the space of a few hours, she deteriorated further; her confusion being more severe than before.
I’m not going to write much more here about the following hours, but where we had been expecting to leave the hospital and get married the following weekend, we were now looking at staying in the Churchill until the end. From this point, it turned out that Ailsa was only with us until early on Tuesday morning - it was all so much faster than any of us imagined.
It was only about an hour before Ailsa’s disorientation took over completely, that we were able to exchange our wedding rings in the hospital. Ailsa wasn’t herself, but she had a moment of being so very happy and peaceful. This is my saddest and happiest memory all at the same time - it may not have been official and certainly wasn’t the wedding we had imagined, but it meant a lot to us.
