" It was two years ago. Some 'spotting' noted by yours truly. Appointment with GP duly made. My GP is Russian. She orders me on the bed for examination. 'Tis not good. I refer you straight way. You will hear in two weeks'. Alarm bells are ringing.
That night, probably due to Olga's intimate examination, l awake feeling 'wet' between the legs. The sheet is covered in blood. I am scared. I cry. I cannot bring myself to say the 'C' word but, in my heart, l KNOW. I am 59 for God's sake. Too old for periods, and ten years past the menopause. What else could it be?
My husband looks shell-shocked already, and we're not even started! I find myself reassuring him. 'Normal life' resumes.
Fast-forward one week. A letter arrives telling me l am to have a hysteroscopy. It says l shouldn't drive afterwards. That and the word 'oncology' are enough to raise my anxiety.
17 JULY 2014 HYSTEROSCOPY DAY
We arrive ( via taxi) at the hospital, a hitherto unknown place. It is huge and eerily quiet. In my memory there are three distinct parts to the day.
Part1: involves what l assume is 'ultrasound'. A young female, unfriendly and unsmiling, inserts something in my vagina and wiggles it around a lot. There is at least one other person present but no=one speaks or offers explanation, information, or simple reassurance. The (sonographer?) stares blankly at the screen in front of her. I wonder what she is seeing, and why my nether regions warrant such unflinching scrutiny/interest?
Between Part 1 and Part 2, a nurse administers drugs- tramadol , l believe.
Part 2: In another room, a male registrar gets me to sign consent forms. He is friendly, but non-commital, and l have no recollection of him telling me what was yet to happen. Has he already processed what emerged from Part 1 l wonder? If so, he isn't saying.
Part 3: Involves me sat precariously on a clearly-designed-for-the-purpose-of-torture chair with my pants off and my legs akimbo. I don't recall any niceties or explanation. What l recall was a male with a speculum, and another doctor stood behind him, arms folded and wearing a grave expression. A third male and two females are also present. A metal implement is inserted and more wiggling about ensues. I hear low moans and realise they are from me. I am gripping the hand of one of the females and saying sorry repeatedly.
The man with his arms folded asks about pain relief. Another man says 'you'll need a hysterectomy'. Then water is whooshed into my uterus ( because l am bleeding?) and l overhear someone pointing out the 'white lines' on the screen. The expressions are grave.
The word 'biopsy' is mentioned. More pain follows - like your worst-ever smear test, but with a bigger audience and a lot more foreplay.
Finally, it's over. The kind-faced female tells me l 'did well' as she points out the tissues and tells me to get dressed. I am to make a 'follow-up' appointment.
No-one has said the word but l KNOW. I just KNOW that l have cancer.
My husband is waiting. I can tell he's been crying. I tell him 'biopsy' and 'hysterectomy' and he knows too. It is a searingly hot day. Our carriage awaits. We grip each other's hand for the entire taxi-ride home. I have a pad between my legs, and a surreal sense of this being the start of a journey we hadn't envisaged.
31 JULY 2014 ONCOLOGY/ GYNAE
Appointment with oncologist. 'It's bad news l'm afraid'. I have cancer. Not any old common or garden cancer! I have serous papillary carcinoma, pretty rare, fast growing, grade 3. I ask if it's serious. It is. I ask what will happen next. MRI scan, hysterectomy, radiotherapy.
I am sent off to meet Amanda, my very own Macmillan nurse. Now l really do KNOW l have cancer. FUCK. I thought Macmillan was reserved for the dying. Amanda is kind. She asks lots of questions. I hold it together until she asks about my children.............she offers to tell my daughter for me/with me if l can't find the courage/words.
In the next couple of weeks l tell my sister, my employer, my closest friends. My daughter is on holiday. HOW WILL I TELL MY DAUGHTER? is imprinted on my brain. A close friend says 'don't underestimate her'. And, like an epiphany, l realise l AM underestimating my brave, beautiful girl who has already survived the ( sudden) deaths of her only sibling and her dad. I realise l am thinking l might be leaving her too.
4 AUG 2014 TELLING MY GIRL
l tell her. She cries. l look at my weeping girl and my anger rises. How ****ing dare cancer try and steal me away from my loved ones. How dare it pick on me.
6 AUG 2014 TELLING MY MOTHER
Together, we tell my mother. There is a longer, unedited version l could tell of how she took the news. Let's just say she's a life-long hypochondriac and narcissist. So there is no way me and my grade 3 cancer can be centre-stage! She rejects the Macmillan leaflet l give her, and promptly hides it. 'I'd hate the kiddies to see it'. I explain that my beloved grandaughters already KNOW l have cancer, but clearly she isn't yet ready to be upstaged, or for someone twenty years younger than her to be more 'ill' than she professes to be. Not one question was asked, and no interest was so much as feigned.
12 AUG 2014 CT & MRI SCANS
Big day. CT scan and MRI scan, an hour apart. The CT scan is okay, like being surrounded by a whirring metal doughnut. Like the sound of an aeroplane taking off, but reduced volume. Strange sensation, like mild burning, as the 'dye' solution they insert through a canula travels through your veins. Feels like you might actually wet yourself..........and it was a relief to discover l hadn't!
The MRI scanner is something quite different. You are laid flat, with a weighty 'shield' over your trunk area, and your legs separated by another structure. Your arms are by your side and you are told to remain still. Heavy headphones cover your head and ears and then........it begins. You are slowly shunted into an all encompassing white 'tunnel'. El Divo is playing through the headphones but it doesn't disguise the NOISE........tapping, whirring, hammering. It feels like being entombed, the 'roof' of the tunnel only about nine inches above your head. I try to cope by closing my eyes tightly, counting the 'tracks' on the CD, and feel my heart hammering in my chest. It feels like l am drowning, or being buried, as my panic rises. I press the panic button.
It seems to take forever, but the machine stops, and a kindly nurse helps me out. I am crying and shaking and my heart is racing. Another female, ( the radiographer?) tells me it was nearly over and 'we haven't scanned your tummy yet'. I shake my head. It's over. I am escorted out of the room, crying, into the arms of my daughter and husband. I feel ashamed.
I feel l have failed the first of many still-to-be-determined endurance tests.
14 AUG 2014 RESULTS DAY
The big day. The day we find out what the scan shows. 'Seems like it hasn't spread beyond the endemetrium'. Whoop! Whoop! 'Hysterectomy' is the planned procedure, then recuperation, then radiotherapy. Despite the fact l have to have another CT of the abdomen, we leave like we're lottery winners. Our joy is short-lived.
FAST FORWARD A COUPLE OF DAYS
We are enjoying lunch, in a pub garden. The sun is shining. My phone rings. It is my oncologist's secretary. The CT scan showed a lesion on my liver. It is 'probably nothing to worry about'. However, l now need a PET scan. It becomes 'something to worry about'.
18 AUG 2014 PET SCAN
Bloody PET scan. I realise l am no longer a 'novice' at this scan business. I remove all my jewellery before we leave home. I wear an elastic 'comfort' bra, minus metal fastenings. Jeggings, minus metal fastenings, rubber flip-flops. This way l know l can be scanned fully-dressed. I have learned that a bra-less, heavy-breasted woman aged 59 is not a good look. Even in a scanner, laid flat!
This scan was okay. Not least, the nurse showed me the scanner, talked me through what would happen, explained where she and her colleague would be positioned while l was scanned. I kept thinking 'l wish they'd done this with the MRI'. Maybe l would have coped better?
Prior to the actual scan l have one hour enforced rest (to enable the radioactive material to course through my bloodstream). I am told this makes the images clearer. I read magazines while l wait.
I am told it will last forty minutes. It seems much quicker. Despite being told l am to avoid pregnant women and children for six hours, l am free to go. Into the hugely busy hospital, ironically full of women and children..........!!
I wend my ( radioactive) way home.
21 AUG 2014 PRE-OP
Pre-op assessment. A totally hideous experience. I could forgive the seventy minute wait to be even spoken to. I could forgive the unhelpful, unfriendly receptionist. But, when l am finally seen, l am asked questions that, frankly, could have been on a form. I did point out that l'd had seventy minutes in the waiting room when l could have filled up a form with such basic info on. Frankly, any healthcare assistant could have wandered around the crowded waiting room filling up the bloody forms ( name? address? sex? etc etc ). I feel irritated, patronised, annoyed. The 'sister' seems to hate me. 'You'll need to take that off' she says, pointing at my polished nails. She isn't impressed when l tell her my consultant assured me it wouldn't be necessary and, on that basis, l would ignore her 'advice'.
I return to the ( appropriately named) WAITING room.
After a further fifteen minutes l am invited into another room to see the young doctor. She is profusely apologetic. She tells me each appointment lasts an hour, but is only allocated twenty minutes, hence the long delays. She looks like she might cry. She is constantly interrupted, by her phone, the bleep, another knock at the door. Her stress is palpable. I am angry on her behalf, the impossibility of doing a good job with such a shit system in place. As l leave l ask the miserable receptionist where l might find the complaint forms.
Today was not an example of the NHS at its finest. It wasn't my finest hour either, to be honest.
22 AUG 2014 LIVER PROBLEM?
My consultant rings. He tells me there is a 'lesion' on my liver but, after due consideration, they are going to proceed with my hysterectomy anyway. 'Hopefully' it will prove insignificant, as it's not causing symptoms or problems. They will take a biopsy during surgery. Bloody delighted with this news!
29 AUG 2016 HYSTERECTOMY
Oh the thrill of realising you are top of the list! No hanging about for me- l am weighed, undressed, gowned, canulas attached, and all before 8 am. The anaesthetist is rather handsome and reassuring. He tells me l will have spinal anaesthesia as well as general. I ask why. He says for pain relief and incase l need abdominal surgery. It reminds me there is still everything to play for. My lovely consultant surgeon is kind and authorative, asks me to explain in my own words what l think is happening today. He assures me he'll take good care. I believe him.
I say farewell to my husband and am wheeled away by a lovely care assistant who tells me they all fancy the blue-eyed anaesthetist and call him 'Dr Love'. It makes me laugh and she shrieks dramatically when l threaten to tell him.
At some point l realise we have entered 'theatre-land' as everyone is dressed in maroon scrubs and wearing 'crocs'. The atmosphere has changed. More urgent. More purposeful.
We have reached our destination. We are in theatre. Doctor Love is there waiting for me! I tell him his nickname and he laughs. Then he does the spinal thing. I had expected it to hurt. It didn't. Then the injection in the hand........and induced sleep.
When l awake, l am told NOT to prod my tummy. I realise l have had keyhole surgery which, in turn, makes me realise l could be out of here pretty quickly! A bit later l am wheeled to my own room, with ensuite. I have an intraveneous drip, a breathing tube, and a catheter. I am pain-free and euphoric. Cancer gone! Yay!
Later, l find out l was in surgery four hours. The drip is morphine ( which explains the no-pain/euphoria). Nurses routinely pop in, on the hour, blood-pressure, temperature, the usual post-operative assessments.
My husband and daughter visit. Their relief is palpable. We laugh and joke and, although l am bed-bound, l feel happier than l have for some while.
After my husband leaves, my daughter takes of photo of me. She entitles it 'The Belle of the Cancer Ward'. We laugh our heads off. l might have actually wet myself if it wasn't for the catheter........!!
The photo remains our secret.
I am 'released' the next day, to the amazement and delight of myself and my loved ones. My surgeon says it's a testament to my 'good health' and 'fitness'. He is smiling.
THE NEXT FEW WEEKS. RECOVERY.
Friends rally. Flowers and cards arrive. I am filling in my 'Happy Book' daily, and adding notes to my 'Happiness Jar' as if my life depended on it. I stop keeping a 'log', no idea why, maybe just bored with bloody cancer? We live on the seafront. We have a beach hut. Both prove to be great incentives to walk every day, to enjoy the sunshine. I miss driving, but not as much as l'd expected, and only for three weeks. My husband admits he quite enjoyed playing doctor, administering daily injections for the first couple of weeks. I am walking in a peculiar way, nerve damage caused by spinal anaesthetic, very bizarre.
Everyone assumes my struggle with cancer is done. They assume the operation removed it and l am now 'fine'. I am far from 'fine'. Apart from the gammy leg, the constipation, the post-surgery blues, l am struggling to adjust to being a 'patient' in my own home. My absolute lowest point is the 'enema incident' when l have to ask my husband to intervene after days of chronic constipation. Wretched humiliation.
FAST FORWARD DEC 2014
RADIOTHERAPY & BRACHYTHERAPY
Bloody radiotherapy. Five days a week, for five weeks. A necessary evil. Followed by brachytherapy times two. Bloody awful. It just became our way of life, our new 'normal'. The 'bonus' was l lost a stone in weight due to constant diarroeah and nausea, and a reluctance to follow my usual vegetarian diet. Most of my every day staple foods were on the 'not recommended' list.
Christmas 2014 was 'stolen' from us. Ditto New Year. I spent both in bed, exhausted by the gruelling regime of radiotherapy.
The worst part? Everyone telling me how 'lucky' l was. Lucky to not need chemo, so l didn't lose my hair. Lucky the cancer was 'contained' in my womb. Lucky to have no visible scars or disfigurement. I didn't FEEL fucking lucky. I felt hopeless and angry.
I hated the 'scrutiny'. The 'oh, but you look so WELL'. The weight loss helped, as did my make-up, my fake smile, and my sheer bloody determination not to let cancer steal any more of me. I met people strictly 'by appointment only' through that period, afraid to let my guard down, and determined not to be pitied by anyone. It worked. I think. But it was very lonely. I wouldn't recommend it.
SUMMER 2015/ EPILOGUE
I have retired early from my job as a teacher. I feel well and happy. It is my 60th year. My birthday is in October but I bring it 'forward' to August, when there's at least a chance of sunshine!
I am surrounded by family, friends, neighbours, colleagues, loved ones. We are celebrating my 60th, on the beach. There are gazebos, balloons, bunting. I have instructed 'NO PRESENTS' and requested donations to Macmillan instead. We have a ball! Strangers stop and tell us THEIR story, and throw money in the collection buckets. People stop and ask what we're doing. They bring wine or beer and join in with the party. It was a memorable occasion, in every way.
My 'Birthday Bash' raised £2,000 for Macmillan. They were my main source of information and support throughout my illness. They do amazing work, every day, and l was glad to do something positive. Basically, l sat on my arse, drinking wine, having a lovely time! Hardly a marathon effort! But it restored my pride, my self-esteem and my confidence. It made public what l had been through, and survived.
I'm still living in the shadow of cancer. I still need regular scans, blood tests, etc. I thought l'd be 'free' of it by now and l'm not. Even my bloody liver keeps up appearances! My type of cancer has a high recurrence rate and might yet have another attempt at stealing my joy.
Let it try! I am so much better informed, and hence better prepared, than l was two years ago. Womb gone. Me? Still here, alive and very much KICKING.
Long may it continue."
If you are willing to share your story then please get in touch using the contact form.
xx Kaz xx