Checking In…

My situation has changed quite a lot since my posts from the beginning of the year. And not in a good way I’m afraid.

I applied for a few of the trials and heard back quite quickly in December about them, and a week or so before the Christmas holidays went in to see the trial doctors to see what they could offer me. At the time they took a few more blood tests, to see how I was doing, and to check i’d be well enough to participate in any of the trials. As it turned out, my liver was showing unusual levels and they pulled me in the next day for an emergency ultrasound.

Long story short, even though I was initially misdiagnosed by the ultrasound as having gallstones, what I actually have now are mets to my liver. This spelled the end to me being able to have any operation to remove the tumours in my pelvis, and instead I had more scans in January to determine the next course of treatment, which has turned out to be more chemotherapy.

The pathway I’ve been put on is a modified Rotterdam Regimen.

The Rotterdam is usually used on Ovarian Cancer patients, but because of the similarities between my Adenocarcinoma and ovarian type tumours, coupled with their reluctance to re-challenge me with Taxol after my allergy to it in 2013, they decided that it may be my best shot. I’ve just had my 6th Cisplatin IV treatment, and now get a week off on no chemo meds as a break before continuing with just taking the Etoposide at home. I don’t feel great, i’m not sleeping, and my hair has nearly all but disappeared. So I hope it’s doing something to the tumours at least. I should find out in a few weeks when they get me in for another scan. Taking all this poison on faith is proving to be much harder work this time, but with it spreading I have little choice.

I’ve had to take more time off sick from work after getting back into it finally. That was a hard blow at the beginning but weeks in now and I can barely drag myself out of bed some days, so I’ve not been worrying about it as much. I’ve been given a laptop so I can log in from home, but have only used that for one of the weeks so far. I’m hoping that with the end of the Cisplatin treatments I can get to grips with how the Etoposide affects me on it’s own and think about getting back into the office. Though with weekly bloods still being demanded I might have to work from home, I think my immune system will still be heavily compromised by the Etoposide. We’ll have to see.

As well as not being able to work, I feel like I’ve had my independence taken away and that is the hardest part. It’s not like I could really go anywhere on my own with my limited mobility anyway, but now things are a lot worse. I feel very weak a lot of the time, and have had two fainting episodes while out of the house, one where an ambulance had to be called out for me. It’s made me afraid to go out on my own, and actually, to even be in the house by myself sometimes in case it happens again. I feel trapped and bored and exhausted with it all and I have no idea when I’ll be able to pull myself out from this. I’m again, hoping it’s the Cisplatin that is to blame and not the Etoposide – which I’ve been told I could be on indefinitely if it has worked.

And then to bring you right up to date, in the last couple of days I’ve started on a private trial through the Care Oncology Clinic in London after reading this article.

Again I have no idea if it will work, but it’s a chance I have to take. I’m feeling optimistic about this part of it, knowing that the side effects aren’t anything like the chemotherapy ones. Also, it’s stopped me feeling so guilty about everything I eat in regards to how much glucose it might produce because even though I’ve been trying hard to cut out sugars and carbs as much as possible, it’s really hard for me on a long term basis. And having dropped another stone in weight through this, I have to keep eating what I can these days. I think I now weigh less than I did when I was in secondary school, which is saying something. It’s scary, not having a reserve. Possibly the reason I am so bloody tired all the time too. I definitely need to get myself some recipes for high fat stuff to munch on during the day that is easy to get hold of. Making stuff is out of the question with the amount of time I can actually stand for without getting tired or dizzy for the time being. Again, hoping this goes away with the Cisplatin.

I’ve held off on posting for a while because I hate writing and sounding down. I hate bad news. I hate being a downer. But the fact is that I’ve gone from being someone with cancer that they might be able to cure, to a full-on stage 3 palliative care patient.

And it sucks.

  1. Wish there was a ‘dislike’ button Lindsey. It’s shit that you’re having such a rough time with chemo and I know how depressing it feels when you can’t function. My consultant has a theory that the worse you feel, the more likely it is the drugs are working. Hopefully with the cocktail of chemo & Care oncology meds the tumours are being blasted into submission! I hope your next scan shows the pain has all been worth it xxx

  2. Katy said:

    I’ve stumbled across this while trying to get to grips with Twitter and I’ve got tears streaming down my face after reading it. I wish with all my heart that there was something I could do to make things better for you.

    • linds said:

      hey, I’ve only just spotted this, i’ve hardly logged on at all since the last post – i really need to keep it a little more up to date 🙂

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