Morning all, 1st time poster - your posts, experiences & info has helped me navigate the worst months of my life. I wanted to share my journey in case it helps anyone
I was diagnosed with CC on holiday in England end of Aug 2022 after being hospitalised following blood loss. I had clots the size of my fist. The consultant told me he could see a tumour of at least 5cm. He did a biopsy & called me with the results a few days later. I went back to Scotland, had to have another biopsy as the countries don’t share medical records.
I didn’t really have any symptoms, I did bleed following intercourse a few years ago but that cleared up. I had been having strange joint/muscle pain in my arms/hands/shoulders since March 2022. This disappeared after my 2nd haemorrhage in Dec 2022.
Following MRI/PET scans it was confirmed I had 3C2 CC with it in my pelvic¶-aortic lymph nodes. There were suspicious nodes in my neck. I waited ages for a biopsy of my neck, eventually had an ultrasound which showed no abnormality though I am still paranoid about this!
I got the standard treatment plan - 25 radio;5 chemo;4 brachy, got my tattoos &treatment start date of 12th Dec 2022, 3.5 months after i was first diagnosed. I developed anxiety, I got prescribed beta blockers but they made me worse! Once I knew I was starting treatment my anxiety subsided a bit.
I hadn’t had a bleed since Aug, then I had severe bleeding the friday before starting treatment, went to A&E, was sent home with tranexemic acid. The next morning, I had bleeding again, I was soaking 600ml incontinence pads every 20 mins & passed out. Went to A&E again, taken straight to resus. This bleed was the worst thing that has happened to me this whole time,it was so traumatic. I was taken to hospital for 2 blood transfusions & kept in until the day I was starting treatment.
I got my radiotherapy on day 1 but chemo was delayed as I needed another 3 transfusions before I could start.
I managed 4 chemos (didn’t get the last 1 as my white blood count was too low),the Dr kept reassuring me that the main treatment was radio.
I coped okay apart from the extreme tiredness which hit 4 days after chemo. At week 4 I had really bad diarrhoea which lasted 3 weeks & I lost 10lbs. It was tough,I went off a lot of food & stuck to a very beige diet of toast, bananas, macaroni cheese, sausage&mash.
After 2 weeks of treatment I started to get very painful twinges in my back at each side, then pain in my chest when I breathed deeply, mentioned this to a nurse. An X-ray showed I had several blood clots in various parts of my lungs, most likely caused by the chemo & tranexemic acid (I was paranoid to stop taking it) So I had to take daily injections for 2 weeks and am now on Apixaban until July and iron tablets until June.
I was dreading the brachy, I had a GA to get the rods inserted, gas & air to get them out. I wasn’t too concerned about having to lie still for 24hrs with the rods in as I had my own room with tv, had my iPad, book etc. The worst bit was getting the last part of the rod out, it didn’t help that I was clenching & couldn’t relax, but it couldn’t have been that bad as I went back for round 2! Following the rods getting inserted the 2nd time I found I was in more pain & had to ask for painkillers a lot.
I am now 6.5 wks post treatment, my energy levels are much better. I get pain in my hips and lower back if I am on my feet for too long & stiff if I have been sitting for too long. I have a pain near my shoulder blade that I am getting paranoid about but Dr at my 6 wk check up isn’t concerned. A week after treatment ended I got really bad radiation burn on my back&bum, I used creams that had been suggested & it cleared up in a couple of weeks.
I had been dreading using the dilators but thought I better get started a few days before my 6 week check up. I had a very large wine first to try to relax! The first one went in fine, as did the 2nd after some pressure.I haven’t got the courage to try no 3 & I won’t be using no 4!
I had my 6 week check up last week, the Dr examined me & said the tumour was no longer visible to the naked eye. My notes said that she had also observed this during my 2nd brachy. I am waiting for an MRI in about 6 weeks time to see the fuller picture.
I stupidly thought that I could still work during treatment (I have been working from home since covid) but glad I got signed off as I wouldn’t have been able to work with the fatigue. I have a bit of anxiety about going back so am considering asking to be signed off until I have my MRI results. I’m lucky that I get 5 months full pay then 5 months half pay.
I have to say that all the nurses, radiographers, Drs etc have been amazing throughout my treatment. If you feel something isn’t right as I did with the blood clots please speak up so someone can help you.
Sorry this is so long, I just wanted to jot down my experience in case it helps someone else!
Much love to you all 
Em
