Hello fellow chums,
So today I got the results of my PET scan from yesterday. Final diagnosis is SCC 5.5x2.3cm rectal into anal canal plus a newly discovered 2.7x1.5 tumour in the deep pelvic left obturator (mmm still slightly baffled about that one!) Stage III and in “several lymph nodes” (must remember to ask on Friday how many!).
I have my first consultation with oncologist this Friday. I fully expect it to be chemoradiation (no surgery and hopefully no stoma).
The new secondary tumour scared me when I found out about it. Previously it had been called a “shadow” so it was a bit of a blow to find out I have two tumours. However consultant tells me it is in situ near my original tumour albeit in the pelvic cavity so it will be targeted by the radiotherapy I will have anyway. They can’t biopsy it because if where it is.
It’s like one step forward and ten back… I’m completely exhausted with the stress of waiting for results. It’s so frightening. But now I know, I feel much more confident that I’m going to fight back and win!
I absolutely do not know where I would be without this FANTASTIC forum and the plethora of information, help and kind souls on here to guide us Thank god for this place!!! So a huge heartfelt thank you to all of those who have reached out to me to offer practical help, advice and guidance.
Yes it’s 1am and despite a massive glug of morphine I’m still wide awake I thought that stuff could knock out a cow… not me! Opposite effect! My sleep has been appalling lately. To be expected I suppose…
So now I have to think how to prepare my little girls (they’re only 8 & 10). For now they’re blissfully unaware. School term ends soon so if I can keep up appearances until then that would be great (despite my new and attractive “John Wayne” walk and my penchant for yoga child’s pose (anything to not sit on my bottom!).
I’m of the mind not to mention the C word as that will just make them immediately think I’m dying. But to go with the mummy isn’t very well and I have to have some treatment that’s going to make me a bit worse before I get better. I guess I just have to wing it…
I have started to prepare - buying pressure cushions, sitz baths, Himalayan salt, water bottles etc etc And my bedside table is a veritable pharmacy!
I just want to send love and hope to all those out there who are joining us or in treatment or post treatment. This is a group nobody wants to join but actually I feel privileged to be a part of such a caring community and I fully intend to add whatever I can in hope that I too might even help one person.
M x
Hi again Prettypinkroses,
I’m pleased things are definitive now & much clearer where your diagnosis is concerned although I’m sorry you’ve been hit with the double whammy of this second tumour! Looking on the brighter side it’s a positive that it’s in situ & will be mapped into your radiotherapy plan & taken care of with the other beastie! Hopefully it’ll not be long before you get going with treatment, I was approximately 2 weeks after my planning scans etc.
As I mentioned previously my girls were older at 29 & 16 at my diagnosis/treatment & I was very open & honest with my 16 year old as she’s very much like me & deals better when she has the full facts about stuff. My eldest daughter has Down Syndrome & although she’s very switched on, capable & has great comprehension about most things like you’ve said with your children if I’d mentioned cancer she would have had me dead & buried lol! I told her that I had a lump in my bottom, I had to have an operation to take it out (my tumour was surgically removed prior to treatment) & then I had to have where it had been zapped with a special machine to make sure it didn’t come back & she was happy with that as an explanation of what was going to happen. I told her that the ‘zapping’ could make me a bit sore & tired but once it was done things would soon get back to normal which thankfully they did. She was a large part of my inspiration throughout all of this as she’s had so many challenges throughout her life, health related & otherwise that how could I not fight this with every ounce of my being.
It’s great that you’re preparing, this keeps you mentally occupied as well as being a really practical thing to do, I also batch cooked some meals & put them down in the freezer for days when the fatigue was high & I just couldn’t be bothered.
You’re right though this stage is totally exhausting, all of the stress, appointments, scans etc., etc., really do take their toll but I’m also over the moon that you’ve found your inner Wonder Woman & are feeling ready to fight the fight! There are lots of us here that are testament to this treatment being very successful & hopefully you’ll be one of those really, really soon. By sharing your journey you will definitely help others & I thank you for that.
Nicola
