Wish I wasn't here!

Hi…..sorry you find yourself here, but hoping you’ll get a sense of support and not being on your journey alone from this group .

I began my OC journey back in November 2020 and through surgery, chemo, remission and then more chemo (ongoing), I’ve found the 2 things that have really helped me get through it have been a positive “can do” attitude and getting as much exercise and rest as my body tells me it wants.

it’s not easy - a bit like being blindfold on a rollercoaster at the start, but hopefully like me you’ll find it easier to deal with once you move from the initial uncertain phase, when you have more questions than answers, to a plan for your treatment and recovery, and the support of a good medical team.

My other tip is, be kind to yourself - if you don’t feel positive or like doing stuff all the time, that’s ok too. I try to find at least one positive thing to close on each day, and think of each tomorrow as a fresh start.

Wishing you all the best……and it’d be great to hear how you’re getting on if you feel like posting again,

love ️ Bxx

Hi B.positive

Thank you, yes, it's a bit of a rollercoaster and hopefully things will settle down after I get a treatment plan and firm diagnosis. 

I think hearing from others in a similar situation helps, it's sad that we have found ourselves here. But at least we have this group for support. I hope you're feeling okay on your chemo? 

My brother is also going through chemo at the moment (7 years with multiple secondary adrenal gland cancers, but at least he can't get this one!). I've seen how sick it has made him at times but he keeps battling through and refusing to be a victim of this disease, so that's the attitude I'm trying to take. It sounds like you have this attitude too! 

I will keep in touch on here and hope that others can find something useful from my rants! 

Hi

I’m sorry to hear this but at least the medics are now on your case and moving fast. The not knowing is the worst part (I had 11 weeks waiting and wonderingbetween original diagnosis when my CA125 was sky high and a CT scan which finally revealed the extent of my cancer) Once you have your op, which sounds very similar to mine, take life one day at a time and give yourself however much rest you need to recover.  It’s a long and windy road with bumps along the way but keep positive and you’ll get there. You’ve definitely got age on your side!  I’m 61. I’ve now completed 5 rounds of chemo post op and am finally beginning to feel better, although I didn’t have too many side effects from the chemo, just endless fatigue and insomnia. 
All the best!

Thank you, I'm pleased to hear you are doing well! My laparoscopy wasn't as bad as I thought it would be, I had a poorly ovary removed as well as some tissue from some surrounding parts and I think it's just back to a waiting game for the biopsy results. Shame they couldn't remove the larger tumour but obviously rather tricky through key hole! 

My surgeon was lovely and stopped by my bed on her way home to tell me what she had done and showed me some lovely photos of my poorly insides! She said although it is showing some spread she is confident that she can remove all visible signs, hopefully at the end of the month, and then after I've recovered there will be chemo to mop up anything else that may be lurking. She did warn me about the possibility of a bowel resection and I might have to have a sexy little poop bag for a while. I think though as there's nothing obvious on my bowel it's in case the tumour from the ovary has stuck to it anywhere. I guess they have to warn you of this. But at the end of the day if it saves my life I'm sure it's something I'll learn to cope with! Better than the alternative! 

I do feel incredibly lucky that my consultant has been so quick in getting CT results and the surgeon was able to perform a diagnostic laparoscopy within a couple of weeks. I kind of knew mine was cancer before my trip to the consultant, my symptoms and ca125 were blaringly obvious, I had an ultrasound visit within a week that showed a growth and although I had tried to prepare myself for what they were going to tell me it's still a shock when you hear it out loud from someone else. My CT was a week after my US and the results were back to the consultant within 48hrs! All the NHS staff and Macmillan team have been fab! 

X

Hiya, I understand completely as this was me last October . July and August  I was told going the toilet in the night around 30 times was my age and that’s what happens to your bladder . Cutting long story short , another doctor got me In and felt a mass. Had MRI and CT scan - it was a mess so they thought I had endometrias so has to have a full abdominal hysterectomy - that’s when they found out it was ovarian cancer so I went straight into having chemo . Everything is all good now apart from the worry of it returning somewhere and also having hot flushes really bad and the doctor and a consultant saying it’s ok to have HRT patches but my new consultant saying no 

Hi,

I’m sorry you find yourself here but hope you can find it a great source of support. Your story sounded similar to mine in many ways so I thought I’d share some positivity. I was also 40 when I was diagnosed (in November 2012- can’t believe it’s nearly 10 years ago!) My kids were 10 and 12 at the time. My CA125 was over 2000 and I’d had bloating and lack of appetite for about 5 weeks- I knew something was wrong but like you, thought I was too young to have ovarian cancer. My younger brother had been diagnosed with melanoma a few years earlier, so like you, I was determined to keep positive and beat it, which I think helped. I also had an appointment with the stoma nurse in case, like you, they needed to do it as it looked like there may be something touching the bowel but luckily I didn’t need one. I had three lots of chemo, then full hysterectomy and omentectomy, (which showed no sign of remaining visible disease) then three more lots of chemo. It’s a very tough journey and there are bad days and nights, but try to plan little walks or lunch with friends on the good days. 
I feel so lucky to have received the best care in the world on the NHS- amazing doctors and nurses. And I know I’m very lucky to have got this far and not had a recurrence. 
I have an Ashkenazi Jewish background so after the BRCA gene test, it came back with a faulty BRCA1 gene, which explained why I’d got it so young. In 2014, I had a preventative mastectomy because I had a very high chance of getting breast cancer too. 
Wishing you all the best with your treatment and let us know how it goes xx

Hi, Thank you for the reply, it sounds like you have been through the mill quite a bit and have done so well with it all. And the 10 year mark is great to hear!! I'm waiting on biopsy results at the moment, hopefully will get them next week as it's 2 weeks Tues since they were taken. Regardless of the results I guess I'm looking at surgery first as my surgeon seems very keen to get me done! Which is fine with me, just hoping I don't wake up to find a stoma bag. I know it's not the end of the world but I feel I'll have enough to worry about without that added. I'm also from Jewish dissent so I do wonder if the BRCA gene is floating around somewhere. It will be interesting to find out. How did you find going back to work? I'm a nursery manager but I've always been in with the children rather than office based so my company has been putting things in to place to make me office based or work from home. My surgeon has told me not to go into work and mix with the germ factories!   Think it's going to take a bit of getting used to! 

I know exactly what you mean about germ factories- I’m a primary teacher! I left work when I started treatment and didn’t go back for nearly a year. I was part time. My school were very understanding. I did find it tiring when I went back and a few years ago I left the school and set up as a private tutor, which I love! 
I hope you get your biopsy results soon and it’ll be interesting to get your BRCA gene result. I really believe knowledge is power- our kids were tested and my son doesn’t have it but my daughter does so she’ll plan to have kids and then have her ovaries removed and have a mastectomy too. Big decisions but all better than getting cancer! 
I think if you need a stoma bag you’ll be able to get used to it with their support, and it’ll be temporary. It’s amazing how strong we can be when we have to be! Xx