Lydia Brain: My Gynae Month #3
More updates from Lydia for week 3 of Gynae Cancer Month...
Day 15 of My Gynae Month is all about going out for dinner and drinks with the best gals and there is lots of talk about health, including gynae health, GO TEAM! They had a go at drawing the female reproductive system, well done to Megan for getting full marks, she obviously knows her insides! Here are the doodles we did of the insides of a normal non-surgeryfied woman, and one of me! Thanks to my friend Claire for adding my intestines that are now filling my gaping womb gap.
Day 16 A few days after finding out about my Myofibroblastic tumours and I had just about got my head around the idea of talking about it. I spoke to my uncle on Skype and shortly after our call he sent me this, still makes me laugh. Probably the best reaction I've had so far! Beats the old 'at least that's a good cancer to have'/'I know someone who had that, they died'. I think he may have been a little distracted don't you?
Day 17 of My Gynae Month and although cancer is obviously a terrible, it's given me a cause I feel really strongly about. As if I needed a reason to be more opinionated! Generally through my experience I've found areas where support is very lacking.
All practical/emotional/financial/bloody everything support I have received I had to source and find myself. There are charities out there doing a great job, but I'm a pretty proactive kind of gal so went on the mission to find out what support was on offer. The majority is from charities for teenagers and young adults up to 24, if I had been diagnosed 8 months later I'd have been pooped. FYI see Trekstock, they are doing a great job of filling this space! I always think about other patients who are less knowledgeable in the cancer area or less proactive than me. What support do they get? HCPs aren't doing enough sign posting to make sure their patients are getting the support they need, I know mine aren't! There must be thousands of patients out there not sure where the support is or how to find it. Worse still there are some struggling too much to attempt to find it, and surely these are the guys that need help the most!
Anyway (I'm waffling), the point was cancer has taken a lot from me but it's given me new purpose and passion. It's not all selfless and because I'm a babe. Being proactive in raising awareness and getting involved in writing and charities means that when I think about cancer ALL the time, I can think about what I'm going to do about it rather than what it has done to me. So it's basically all to keep myself busy and my mind focused on cancer in a more positive way. It might be avoidance and self-preservation but it works, so who cares!
Day 18 of My Gynae Month through this whole process I have been treated at the women's hospital in Manchester. It is a lovely hospital but also full with pregnant people and babies… like everywhere, all the time. Which is not what you need when you are getting your head round the idea of never being pregnant, like ever, no way, at all. Back when I had 'fibroids' I had to go get ultrasounds. The waiting room would be brimming full of ladies, partners, mums and visible bumps. I remember lots of people staring at me as I was the only woman sat there alone. I assume they all felt bad for that poor young woman all by herself, will she be raising that baby alone? How DREADFUL! If only they knew. I was tempted at the time to join the little queue at the printer with all the expectant parents to get a picture of my fibroid baby just for jokes, but it was around £6 so I gave it a miss, the amusement it would have brought me was worth £2 tops.
Day 19 and HORMONES. Damn hormones! Back before my hysterectomy I was on Zoladex for 4 months, which stopped all my hormones completely and put me in an induced menopause. That had its own pains, like hot flushes, vaginal dryness (always a fun one) but generally I just didn't feel myself anymore. I had lost my mojo! After four months you kind of forget your normal self and think oh menopause isn't so bad, I just get a bit hot. (Read more HERE) then bam! I had some hormones again after surgery and here I was. Full of energy and a totally new person! I'd completely forgotten how much energy and feistiness normal me has.
My tiny amount of hormones post surgery must have felt like loads to my body and I felt bloody brilliant! It's settled now and my bodies realised post surgery insult my ovaries are still in bleh mode! It's been a month now of me thinking I must be in my period stage of the cycle (minus the obvious). But that doesn't add up (even for my ridiculously long periods back in the day). I guess I have too much oestrogen to feel menopausal but too little to feel normal. I'm in a constant state of PMS and it's killing me. I cry at everything. I am so teary! I cry at a sad story, I cry at a cute story (I constantly cry at my cats for being cute). Yesterday I CRIED AT CRYSTAL MAZE! I mean that is legit right? The group were such good friends and it was touching (or I’m insane).
Coming back from Bestival and being me and tired I cried at least 100 times accompanied with around 50 emotions, basically any feeling at all made my cry. So if you see me crying I'm probably happy/amused/laughing, my brain just can’t compute. I also always have at least one period spot, and I want to eat chocolate, oh life without oestrogen is hard, bleh!
Day 20 of My Gynae Month. Getting my letter confirming that no further treatment is needed should have been a time to celebrate. I did feel kind of happy but mainly I just felt emotional and worn out! It had all been a bit much and it symbolised the start of trying to 'move on' and find the elusive new normal. Which is rubbish because those things don't exist.
To me the impact of my surgery was far more to do with losing my womb and my fertility than it was ridding me of my tumour and being past treatment/cancer free. So it didn't exactly feel like something to celebrate. Is it good news? I still don't really know! I've heard a lot of people say that moving on after cancer is harder than going through treatment and I agree. When you are ill you know what to think about and focus on. It takes over your life and all your brain space and energy is taken focusing on treatment, your next appointment, the next scan. Is it working / is it not. Then after it's a bit like you're dropped into the ocean miles away from shore and expected to just swim, on you own, then like get up and act normal (FYI, I can't swim).
There isn't much support for moving on after cancer, and it can be a bit like BAM you just have to get on with normal life, work, think, function?! Most people assume you are all okay now and don't really expect to see otherwise. For your life to change so much and revolve around one thing then on a days notice you don't have it anymore and you're a different person now. You can't go back to being the person you were before so how do you adjust? That's rhetorical because I don't bloody know, if anyone does please let me know. Thank you kindly.
Day 21 of My Gynae Month and I'm thinking back to July 2016, pre resection and diagnosis. It was Manchester science week and I was at an event discussing breast cancer research. I had just very nervously asked a question about the gap in research for male breast cancer. It was the last question before the interval and as I stood up to leave... **bleedin' hell** all of a sudden I had a gush of blood! I wasn't even on my period, luckily I was wearing a 'just in case sanitary towel' because that was how I rolled. It wasn't nearly enough, I ran out of the room as quickly as I could, luckily I was at the end of the back row. I didn't have a chance to look at the seat. I ran to the toilet and hid until the interval was over and the toilet was empty. My ex boyfriend waiting patiently outside while I had a little cry and tried to sort it out as much as possible. He made sure the way was clear and I made a run for it. I had to get all the way back to the car, about a five minute walk. I didn't bleed anymore after that. We put a plastic bag on the car seat and drove home. I have no idea whether the poor person sat next to me returned from the interval to find a pool of blood on the seat next to her, soz! It's safe to say I no longer get embarrassed easily.