Because you have to take the rough with the smooth…
So I guess I left you all on a bit of a cliffhanger after my first blog…Apologies for the delay in following up, it’s been half term and I’ve been rushed off my feet with the boys (L is almost 8, H is 4 – they love and irritate each other in equal measure). Now where was I?…
Significant Trauma 2:
In 2014 life was pretty damn good. L was about to turn 3 and being a June baby we’d organized a big outdoor party in the local park. My husband N and I had been trying for another baby for a few months and we were so excited at the prospect of giving L a sibling. Our flat was on the market and we’d just accepted an offer over the asking price, affording us a deposit on a family home with a garden in Worthing.
This is my favorite photo of L and I at his 3rd birthday party. I usually hate my photo being taken but this picture captures a moment in time when I was truly happy and in a good place mentally. In fact I think this was probably the happiest and most secure we’d felt as a family unit.
Two weeks later, everything changed. I’d been taking pregnancy tests daily (sometimes twice a day – OCD is an expensive habit) and we’d just found out I was pregnant again. That faint line on the test window meant the world to me and I was already thinking about baby names and imagining how L would take to being a big brother. Of course there was the small issue of a breast lump that I was having investigated, but I felt pretty invincible.
The Bad Lump
I’d had biopsy’s earlier in the month but this wasn’t the first time I’d had a breast lump and as a non smoking vegetarian with no history of cancer in my family, I’d barely given it a second thought. So when N & I arrived at the hospital laughing and joking to get my results, we never anticipated bad news. We were too busy planning our future with L and our new baby. That was until we got taken into the bad news room. Think armchairs, lily’s in a vase and a box of strategically placed tissues. Before the consultant opened his mouth, I knew. I was diagnosed with stage 3 breast cancer. They told me it was fast growing and there were signs of lymph node involvement. They wanted me to terminate the pregnancy and commence chemotherapy right away. It’s surreal because I don’t remember my husband’s reaction at all. I guess he was doing his quiet, shades of grey thing and holding everything in; heaven knows what must have been going through his head. All I remember is the way my heartbroken wails filled the room as I sobbed ‘what about my baby?’ A mastectomy and lymph node clearance was planned for in four days time (the blessing of having private healthcare through my husband’s work) and I was sent home to reconsider a termination.
On reflection I really have a lot to thank my Autism for in terms of how I got through the next 12 months. You see one of our super powers is the ability to hyper focus. So I decided to direct all my focus on our growing baby and to switch off the fear and panic I felt about the cancer invading my body.
A Story about Boobies
It seems only fitting as I’m about to describe having my breast cut off that I reflect on my relationship with my breasts.
I was a painfully shy and awkward teenager, very naive and self conscious. I hadn’t been prepared for puberty. Let’s face it puberty is tough whoever you are but for an undiagnosed Autistic young woman it was pretty harrowing. Periods made me feel dirty and smelly. Bras felt like torture devices. My brothers teased me mercilessly and I hated my changing body. However as I got older my breasts grew and grew! They were ginormous on my small frame but I started to notice that boys liked this and that other girls would dress to emphasize their cleavage. Even at 44 years old I still don’t know how to dress, how I should look, I don’t have a style. Back then I coped by copying others. I bought slinky tops and experimented with makeup. By my early twenties I was given the nickname ‘Boobies’. So it’s fair to say they felt like part of my identity and I saw them as one of my USP’s (unique selling points!)
Goodbye Bad Boobie
Now here I was at 40 years old and my USP’s were trying to kill me! I had so little time to prepare for the mastectomy that I didn’t prepare at all. I just wanted it off because I wanted the cancer out of me, I never had time to grieve or to think about the repercussions of such major surgery.
When I came round from the general anesthetic I’d been having a vivid, happy dream about a family picnic. But when I opened my bleary eyes and found myself in a curtained cubicle with drains coming out of my body I cried & cried.
‘It’s ok love’ said the well meaning nurse ‘it’s just the anesthetic , it makes you all emotional’ and I remember thinking ‘I’ve only got one breast. I’m a monster’.
I was in hospital for 4 days I think. At first I couldn’t bear to look at myself. N my husband helped me shower and I refused to look down or into mirrors. But then my beautiful sweet 3 year old L came to visit me and he said ‘Mummy can I see where the doctor snipped your boobie off’ and I thought, I have to look if L is brave enough to look. So we looked together and he said ‘Ow, that looks sore’ and I think I started to mentally detach from my body, from my physical self at that point. I didn’t look like me anymore so I stopped thinking of my body as mine. That probably sounds mental but I am mental, remember? And maybe it made everything easier to disassociate like that.
The next few months were a blur. I refused to start chemotherapy until the second trimester when it is known to be safe in pregnancy. So suddenly I had 12 weeks of being in limbo land. I didn’t feel ill, I certainly didn’t feel like I was battling a deadly disease. My husband took on the role of cancer fighting dietician and began making me a daily fresh super juice of vegetables and fruits to boost my immune system and help our growing baby get strong. It was a labor of love on his part and as much as I was grateful, my word those juices tasted bad! Some days were better than others but beetroot, cabbage, watercress?! Those things should not be juiced in my humble opinion. There were days I kept that juice down. And days I vomited it straight back into the kitchen sink. But we persevered, hubs and I, because we wanted me to live and our baby to live.
So let’s talk prosthesis. Now remember as an Autistic woman I am hyper sensitive. I can feel the bracelet on my wrist, the shoes on my feet, every itchy label on my clothes. I can’t bear anything itchy or tight against my skin or anything that makes me sweat. My one remaining breast that started out as a FF cup was rapidly growing with the pregnancy and the lady at the specialist bra place measured me as an H cup! She proceeded to hand me a giant, flesh colored, wobbly dome of ridiculousness which she attempted to squeeze into my bra. Of course my bra wasn’t a mastectomy bra so had no supportive pocket. And although the lady had prosthesis in my size she said they didn’t have the special bras in my size…….
I think I managed about 2 weeks with that bloody thing. It was so big, so heavy. It made my shoulders ache and my bra strap cut in. I felt like a ridiculous fraud because nothing I did seemed to make the prosthesis sit parallel to my remaining breast. So I chose practical. I chose freedom. I chose to go without. To some it might seem horrible to go around lopsided with an H cup on one side and flat on the other. But I was comfortable and I ignored the stares. I even think I managed to forget half the time. I do remember tearing strips off of a random guy in a pub one Sunday lunchtime who I was convinced was laughing at me. ‘Do you think this is funny, do you?? I shrieked while N guided me to our table before I could embarrass myself any further.
The Dreaded Cold Cap
I was due to start chemotherapy in the September when I was 14 weeks pregnant. I was desperate not to lose my hair which probably sounds very vain but my hair was my only other physical USP in my opinion. I had long blonde hair like the Timotei girl on the shampoo adverts. I discussed my concerns with my oncologist, R, and he recommended I ‘cold cap’. The theory is you wear this skin tight fabric helmet that is strapped tight under your chin, during each session of chemo. Coolant is pumped around the helmet and literally freezes your hair follicles so the chemo can’t get to them. One word. Ouch! I mean seriously, it is a torture device. Sensory hell for even the most chilled out person (no pun intended). Plus it looks bloody stupid. Each chemo session I would sit there clawing the arms of the chair, stuffing my face with chocolate, feeling like any second I would have to rip that damn cap off. But you know I never did. I stuck it out. Because I wanted to keep my hair. And I did keep my hair, well most of it anyway. I even kept my eyebrows and eyelashes. Ironically 3 days after finishing my last chemo I woke up on my 40th birthday and my eyelashes and eyebrows were no more! Just tufty pufty whisps of stray eyebrow and stubbly patchy eyelashes. I was heavily pregnant by this point, 32 weeks with a glorious bump and I was so very grateful that all the scans showed H was thriving. But I mean seriously, to lose my eyebrows and eyelashes on my 40th?? Someone up there was having a right laugh at my expense.
Welcoming our Warrior
4 weeks later at 34 weeks gestation H was delivered by planned Caesarean section. We had to get him out early because my oncologist was anxious for me to start radiotherapy which can’t be done while you’re pregnant. We knew H would probably need to stay in special baby care for a bit but to be honest I was so desperate to meet him I don’t think I could have lasted another day. L had been delivered by emergency caesarian so I was out cold and missed his arrival. Therefore it was such a treat to be awake for H’s birth. My only regret is that I wasn’t able to keep my knickers on! In my typical Autistic naivety I thought as he was coming out of my belly and not my lady bits, that I’d be able to keep my pants on…I must confess I had developed a crush on my Obstetrician, a silver haired hero of a man who’d scanned me every two weeks during the pregnancy. The thought of him seeing my lady garden was rather mortifying but my husband had a good laugh about it!
And then we were four, but the Boobie was no more!
And this is where I’ll sign off for now. It’s almost 1am and I’m back on school run duty tomorrow. So I’ll leave you with the happy image of us cuddling our incredible tiny warrior H. He needed a little help breathing & feeding but he was a fighter like his Mummy and fit as a fiddle.
Do come by again if you’d like to hear more about my journey with Autism and Bipolar and if you are enjoying my blog please consider following me. Thank you!
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