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#33 – Clinical Trials

I thought it was about time I updated you all on my life over the past six months since my last blog, so here goes…

I recovered really well from my surgery back in December, but unfortunately while I was recovering I discovered that more cancer had popped up again. One step forward and two steps backward. In cutting out one tumour, another one was able to grow as well as a couple of spots on my liver too. And just to kick me while I was down, my window of opportunity to do egg retrieval before resuming chemo was firmly closed on me. I’d been waiting since diagnosis to potentially have egg retrieval (I’d need to be off chemo for 12 weeks to do this) and it was heart-breaking to have that opportunity taken away from me. I did still have a tiny bit of hope that I could get it done later this year, but unfortunately that isn’t to be for me…

The day I found out my cancer returned, I was extremely angry and frustrated. But determined to get back onto chemo and kick this cancer again, and started FOLFOX the following day. This chemo regime has the worst side effects of them all – most noticeable were not eating, drinking or touching anything cold. Which is something I struggled with because I love drinking cold water. From round one of this chemo regime, I felt crappy straight away. And the side effects lasted a whole week which sucked. I was so used to my previous chemo just knocking me for 2 days, so this was a huge difference. My next scan showed that the 2 liver spots had gone and the other tumour in the pelvic area may not have been cancerous. This was great news! It didn’t last long though, as the scan after that showed the liver spots were back again and the pelvic tumour was definitely a tumour and it was located in the Pouch of Douglas area (which I’d never heard of and still can’t really explain exactly where it’s located in the body). As well as now having peritoneal disease which was the final kick in the gut for us. Once there’s disease there, it’s a definite no go for any potential egg retrieval. I found this out on my 7th round of FOLFOX chemo and because my platelets had still been giving me issues, we didn’t go ahead with chemo for that round. Instead my oncologist suggested a round off (4 week break) to let my body – and platelets – recover, before starting another new chemo. In the end, I had an unplanned 5 week break as my chemo was accidentally cancelled on me. I was furious. It’s my body that’s trying to fight cancer and someone accidentally delays my treatment for no apparent reason? If we weren’t in lockdown at the time, I would have found a smash room to go and break things. I was livid.

My 50th round of chemo started with FOLFIRI chemo. A slightly “easier” chemo for my body as it’s meant to not make me as nauseous. But we didn’t even make it home after chemo that day before I started feeling nauseous and had to take a tablet. By 6pm I was in bed trying to sleep, after taking another tablet and extra THC to help knock me out. That was unsuccessful. It was one of the worst nights I’d had on chemo since the beginning. And really made me question if I could keep going through this. It’s been a rough ride this year, scans showing promising results then showing progression. It’s a rollercoaster everyday and I’d like to be able to just get off and stand on solid ground.

I’m writing this while I’m currently on chemo #51. Yesterday I found out that my tumour markers (CEA) have risen. This isn’t a good sign at all as it means the cancer might be becoming resistant to chemo. As I’m on the last type of chemo I can have, my next step is a clinical trial. This scares me. I’m lucky to have got this far with chemo doing really well for me. But I hate that my next option is so unknown. I pushed for my oncologist to look into trials for me asap after finding out my markers are rising. I’ve also got a second opinion booked for a few weeks time to discuss other potential treatments. Either way, I’m very cautious about my next steps, very hopeful that a clinical trial will be able to help me and hoping to be able to get stuck into it ASAP, before my markers rise any further. I’ve been having more frequent pain in my abdomen and this is most likely caused by the peritoneal disease. It’s so frustrating not being able to do anything about it and just leaving my fate in the hands of the doctors. I really hope they can find me a fantastic trial to start really soon.

I’ve also been researching complementary/integrative therapies recently and have booked in for NIIM (National Institute of Integrative Medicine) treatments to start in August. These treatments include high dose Vitamin C IV, Hyperbaric Oxygen Therapy and full body Hyperthermia treatments. It won’t be easy to do these treatments – or cheap – especially if I’m not feeling great on chemo weeks, but it seems like the right place and treatments to try out. They can’t hurt right?

On the back of Bowel Cancer Awareness month, I really want to encourage everyone reading this to get a bowel screening kit from their GP or chemist and do the test. And speak to your GP asap if you notice any weird things going on in your body. Don’t hold off. If you end up having something wrong (and I sincerely hope you don’t) then hopefully it’s caught early enough to avoid the hell I’ve been going through for the last 2.5 years and counting.

Apologies in advance if I don’t reply to messages straight away. Sometimes I just feel really overwhelmed talking about it all and rehashing everything multiple times a day. I’m mentally exhausted and just trying to avoid stressing my mind and body out more than it already is. I hope you all understand.

So this is my not so fabulous update for you all. Let’s hope that by the time I get around to writing another blog, I’ve got much better news to announce!

Photo from a day where I didn’t look or feel sick and just got to enjoy a wonderful night out in the city with my amazing husband and our beautiful friends 💗

Comments

Fiona
July 6, 2021 at 6:12 am

Hi, Keeky what a beautiful photo of you and Anthony. Keep up the good, positive fight.
Not many people have heard of the pouch of Douglas until they have issues. Much love to you and your very supportive hubby xo



Allison Watkins
July 6, 2021 at 6:28 am

Hi Keely,
I have been thinking of you recently and have been checking your blog page crossing my fingers no blogs meant no cancer! I’m glad you have updated us as we want to be able to support you through the harder times. You really have been through more than anyone should have to experience. You are such an inspiration to us all the way you are fighting and continue to fight. You will beat this if anyone can it’s you. If clinical trials is your next opportunity to work towards being cancer free then please let us know how we can help. Why don’t you set up a go fund me page and then all of us that want to help will feel like they can even if it’s in a small way to get you to your goal of being cancer free.? I would be happy to set one up for you if you think it would help? We love you and will make sure to plan a catchup soon take care and keep us updated Ally & Ben xxxx



Kris
July 6, 2021 at 9:31 am

Keep fighting Keely! You are amazing. Always in my thoughts x



July 6, 2021 at 11:51 am

You are one of the bravest women I know. Despite what your going through you inspire us all with your fearless attitude. It’s not often in life I come across someone willing to pour there heart out during such a scary tough time.. thank you for sharing your experience with us Keely you have all of us behind you cheering u on all the way xx



Melanie
July 6, 2021 at 8:07 pm

This NIIM sounds great Keely, I have really good vibes about it! We love you both immensely, sending you lots and lots of positive thoughts xxx
What a fucken year!! You really are the truest of true warriors!



Veronica
July 7, 2021 at 1:13 pm

Thank you Keely for the update. That efin C word is really struggling with you now as you keep fighting back with an almighty force. The treatment has made you feel worse this time as it’s got to the sneaky C and it can’t fight you any longer. You will win this battle soon I’m sure because you are a strong woman. Your beautiful nature has made an incredible impression on my heart and your positivity is infectious. I’m looking forward to leap frog 2022 so put your feet up for a bit you have been busy. Love to you and those super supportive side kicks.



Vicki
July 8, 2021 at 5:54 am

You’re awesome & we love you so much……….just wish I had that Magic Wand to smack you with!!
We are here for you & Anthony 24/7………#fuckcancer



Kate
July 8, 2021 at 9:24 am

Kia kaha, stay strong Keely 💛 You’ll get through this! You are one hell of a warrior my girl and have so much strength! So good to hear you’ve got your NIIM treatments just around the corner. Before you know it, we’ll be enjoying lunch at Sorrento Hotel and then rushing to the ferry with no shoes on!!

You’ve got this chicky! 💪 Beautiful photo of you and Mara too! xxx



carolyn Schriever
July 12, 2021 at 2:44 am

Hi Keely..
I am a friend of your mums.. I have meet you a couple of times.. don’t know if you remember.. But i like to keep updated through your mum on how you are going.. You Keely are a inspiration to us all.. You are a very Strong and determined young lady.. You will fight this and come out stronger than ever before… You’ve got this Girl !!

Carolyn.. Bendigo 💕



Thao
July 12, 2021 at 8:32 am

Hey Keely
I don’t know you. But I just want you to know that you are incredible! You may hear it everyday from everyone that’s sending you positive vibes, take those vibes and keep fighting.
You will be the winner, you have won many people’s hearts and open their minds to live life, love life & appreciate what they have.
Keep fighting girl!



Comments are closed.

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