Life after the big C

It has been a good few weeks since my last post and this one is a follow on to that post, so go read it if you haven't!

Many people believe that once you beat cancer and treatment is over, then life goes back to normal. I am here to tell you that it does not work that way. What happens is something we call the new normal. The new normal is a frightening place to be for a while - you've spent the last while on auto pilot - appointment after appointment, scan after scan, treatment after treatment, surgery after surgery ( you get my drift here ) ..and then it's all over and you're in some sort of limbo. What happens now? What do i do? It is actually very lonely and a tad frightening. At least, that is how i found it and what i have seen with others who have went through it also.

Of course, there are copious amounts of checkups etc where you go through a horrible time of fear ( is it back???) and torture ( why do results take so long?!) And the cycle repeats for many years to come. It gets easier to deal with after a while, but it is always there in the back of your mind, the fear of reoccurance. That will never go away. Every pain, every new symptom and that's it - you're convinced its back. This is just one part of the new normal, the other is side effects...

Ah side effects, the absolute bain of my life. For those who are not familiar, i had a radical hysterectomy - basically everything was removed apart from the ovaries. This was a decision me and my oncologist made. As i was only 26, he felt that surgical menopause was something my body couldn't handle right now and i agreed. So he stitched those bad boys up out of the way and took every last bit of my reproductive system. Horrible, yes, but it had to be done. I can say now, 6 years later, that the recovery for that is still so fresh in my mind that it is almost like i had it done yesterday. Recovery took months and we had some bumps along the way. I expected it to be honest but i didn't expect how much it would affect me not just physically, but mentally too. As someone who already has mental health issues, this was the hardest to deal with and it is something i still struggle with on a day to day basis. In a nutshell, i miss the old me. My body has gone through so much and has changed so much and i am proud of it but mentally, i have a hard time accepting it. It is something im working on and will go into in more detail in another post.

Back to side effects! It was about 2 months post op that i got my first bad IBS flare up. As mentioned before, i did have IBS before the cancer but it was mild and i never had bad pain, until now. I remember it so vividly. To those of you reading this that have gone through labour, you will certainly remember contraction pains - well this is exactly what the pain is like with IBS. It scared the feck out of me - did i damage myself somehow? After all, i was still in recovery. A trip to the doctor followed and i was told it was IBS and was referred on to a gastroenterologist to be looked after. I do believe the trauma of the surgery brought it on more as i suffer very bad to this day. Doctors cannot be certain but they haven't ruled out that it is the cause as any IBS sufferer knows, stress can cause a big flare up and my body was under immense stress as it was... and it was about to get worse.

As time went on, i began to notice my body aching alot, specifically in certain areas. I was also knackered all the time. Doctors did bloods, scans, everything really over a course of 3 years until finally, a rheumatologist confirmed what i already knew - i had fibromyalgia. So little is known about this chronic condition, i have even seen some doctors online dismissing it, but its real - believe me - and it is horrendous. But if i thought that was it, life was about to throw me another curveball.

I had just began college ( yes i like to torture myself ) , when the first signs of ovary failure began to show. The right ovary was causing alot of pain, was filling with cysts so it had to go. I had it removed by my oncologist during first year of college and continued on with life, the other ovary would pick up the slack i was told...and he did, for 1 whole year until he started to die too - it had to be removed. I knew what this meant - surgical menopause. I just could not catch a fucking break! This surgery proved trickier than the other one, as they couldn't find the ovary! He went missing it would seem and then when he was found, he was a bit of an asshole to remove lol so surgery took longer and i woke up with more incisions than i had with the first ovary removal ( frightened the life out of me when i seen them as i thought they had found something else when they were in there - my poor nerves ). Within hours, surgical menopause made its appearance - i had been told it can take up to a few weeks but nope, it started that night in hospital and let me tell you, it was worse than i had prepared myself for. The intense heat, sweating, mood swings , insomnia.... all while trying to recover from surgery. As i was only 30, HRT was recommended but there was a catch - i could not start it until i was 6 weeks post op. Those 6 weeks were, quite possibly, some of the worst of my life. I did not sleep for a week straight, my body was shattered, i was shattered! I still attended college, full of men as i studied computing, absolutely sweating in lectures - it was embarrassing and very uncomfortable. Thankfully my classmates and lecturers knew what i was going through, so everyone did their best to help me through those weeks until finally i went onto HRT and my symptoms became more manageable. I will be on HRT until my 50s and i still have bad flare up days, usually when the fibro or IBS flares, everything else does too - those can be tough weeks.

And my last side effect, the bladder. Oh it took some battering during the hysterectomy ( it bled alot so I needed transfusions ) and has never recovered. Im currently under the care of a great urologist and have injections every 4 weeks but it is not improving. ( Ive alreasy done physio, medications and bladder procedures ) so its back to the drawing board in April when i find out what treatment is next on the table. It would be nice to not have to be beside a bathroom all the time!

So you see, life after cancer can be just as tough as going through cancer itself. It has not been easy and some days i do struggle, not to mention im absolutely sick of hospitals at this stage. But, however bad it gets, i am grateful - i am here to live my life, to see my children grow up, to do all the things ive set out to do. It may take me a little longer and the mental scars may never fade but this is the hand i was dealt and after 6 years, ive finally started to accept it. I have seen women pass from this disease, i owe it to them to not focus on the negatives and instead, embrace the positives. I do this through my continued work in raising awareness of Cervical Cancer, being an advocate for the HPV vaccine and supporting women through all of this with the support group that i set up 6 years ago.

As always, thank you for reading x

Until next time 😁