00:00It was five months ago today that I was in surgery for 12 hours
00:04and I lost a lot of my organs in my pelvis.
00:07I lost my anus, my rectum and I had reconstruction of my vagina.
00:12So as you can imagine this was a major surgery
00:16and at the age of 29 it was quite a shock to have to have it done.
00:21So the reason why I had this surgery was because I had a rare cancer,
00:27a sarcoma cancer that was found in my pelvis
00:30and once I completed chemotherapy this was sort of my last option to give me the all clear.
00:36So this type of surgery is called a pelvic accentuation
00:40and I know there's another version called a total pelvic accentuation
00:43which I think is completely everything in your pelvis removed,
00:47like your bladder as well and that is one thing I managed to keep, my bladder.
00:51So even though I did keep my bladder I still have bladder function issues
00:56because they had to remove my bladder to get to the tumour that was in my pelvis
01:01and then they reconnected it to my kidneys
01:04and that's caused problems with being able to go for a week.
01:08So I have to self catheterise every day and I think it's slowly getting better though.
01:13I think over time the muscles and everything will slowly repair
01:18and hopefully that does eventually get better but we'll see.
01:23I'm five months out of this surgery and I'm doing really well
01:27and I was so scared before I started this journey
01:32that I thought I'm going to be a different person,
01:35my life's going to change forever and I'm really scared
01:39and if I could have just looked at where I am now
01:42and known that everything was going to be okay it would have been so much easier.
01:48So I'm just going to go over my symptoms
01:50and explain the story about how I got diagnosed at 28 at the time
01:55with a rare soft tissue sarcoma.
01:58So it was when me and my partner were travelling in 2023
02:03that I had the symptom of struggling to go for a wee.
02:07At the start of the year it was very mild and I hardly even noticed it
02:12but if I was to need a wee quite quickly and I was trying to push it out
02:17as I pushed it would sort of stop the wee from coming out.
02:21So throughout the year that got a bit worse and I was having UTI tests
02:27and all of that and nothing would ever come back
02:30but because I was travelling I just thought maybe it's just a change of environment
02:34and there's lots of different things going on so I wasn't too worried
02:38and obviously because I was young you never really think it's going to be anything sinister.
02:42So after the year we then got to Australia and settled down
02:47and that's when it started to get a lot worse.
02:49So it was my boyfriend's 30th birthday and I ended up not being able to go for a wee at all.
02:55It was completely blocked so we went to A&E
02:59and that's when they put the catheter in and drained out like 2 litres of urine
03:04and said that this isn't normal and we need to find out what was wrong.
03:08So they put me in a CT machine and when I came back out
03:11they said that I had a 10cm mass in my pelvis and they're not sure what it is.
03:17Obviously a 10cm is quite big, it's like a softball size
03:22so I found it quite crazy that I never knew that that was there
03:26and also really the only symptom that I had was that I wasn't able to go for a wee.
03:32So they asked me all the normal questions, did you lose any weight?
03:36Is there any other signs?
03:38I generally didn't lose any weight and I didn't have any other symptoms.
03:42So that was a bit wild and then they sent me to Gold Coast Hospital.
03:48I was admitted for 2 weeks in Gold Coast Hospital where they did every test they could
03:52and then after the 2 weeks they sent me to Brisbane
03:58and that's when the sarcoma specialist surgeon took my case
04:04and explained to me that I had a very rare aggressive form of sarcoma
04:10and he said it's similarities to a leiomyosarcoma or a rhabdomyosarcoma.
04:16He put me in the care of Professor Hayes which is one of the best surgeons for sarcoma
04:21so I'll be forever grateful for him for sending me there
04:24because they have looked after me so well and the treatment that I've had there has been amazing.
04:30So obviously I come back from Australia.
04:32I started treatment at the Royal Marsden pretty much straight away.
04:35I had 6 rounds of chemotherapy and that worked really well actually.
04:40It shrunk my tumour down from 10cm to like 7 or something like that
04:45and then they did say at first that I might not be able to have surgery
04:48because they thought I had spread to my bone in my pelvis
04:52but then after I did the chemo they then realised that they did a biopsy on my bone
04:58and it wasn't cancer so it was benign.
05:01So yeah, I was really lucky for that and that's what led me to then have my surgery
05:06and now I'm 5 months post-op and doing really well.
05:10And yeah, I will have scans every 3 months and I've just got to hope for the best
05:14and yeah, you know, sarcoma is a horrible cancer.
05:18It is very aggressive and it is known for coming back
05:21but I'm not going to worry about it too much.
05:23I'm just going to get on with my life and hope for the best.
05:28.
05:58.
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