“I can’t say THAT word”

Finally I was called into a different room. This one had pictures of my boob skeletons on the computer screen. I could see fireworks of bright lights, streaking across one breast. Almost pretty? Two ladies greeted me happily. Then they matter of factly pointed to the pictures saying there were a few areas of concern and that biopsies were needed to ascertain what these were. Before they even bought me a drink, I was on the bed with one arm in the air having needles shoved into both boobs. Evidently, I also discovered, I’m a bleeder! Blood poured out of me at an alarming rate. At one point both ladies were trying to stop the flow like some disaster movie set in a dam. The next thing I tangibly remember is sitting in another waiting room, waiting to see the consultant.
Because of stoopid COVID, I was alone. I don’t think I felt panic, fear or nerves. Just a sense of sadness. Our family Is young, energetic and happily snuggled up just us and the dog. I had a foreboding I was about to monumentally fuck this up.
I was called into the consultants room, a big, bright, airy room. But I felt an undercurrent of tension. My desire to make people feel at ease helped me through this whole experience. As the consultant examined me, took detailed family history (a shit storm of cancer carcasses!) I tried to smile, reassure and hold myself upright and ready for action. I don’t remember much of what the consultant said but I remember this, “I can’t say THAT word as we await the biopsy results but be prepared for chemo and a double mastectomy.” This sentence echoed round my numb skull for 10 days.

Steve was collecting me from the hospital. As I stood waiting for him I called my sister. “I have some bad news.” “Oh no! Is it Joan?” My long suffering wonderful mother in law who was diagnosed with bowel cancer 10 years ago and has died slowly before our sad eyes ever since. “No, I’m afraid it’s me, it appears I have double breast cancer.” “What! What? Where are, when did, how is this happening?” My poor sister has been blighted by this bastard disease twice and she has had a rough trot though the process, who doesn’t eh? I immediately felt guilty and wished I had waited for the results before traumatising her. But I needed to know her grade for my consultant.

Steve pulled up and I said my goodbyes to my sister. I got in the car and asked Steve to park up a minute. Then I said “Steve I’m sorry but I think I have double breast cancer.” I watched the colour drain from his face, starting at his hair roots and rushing greyly down over his lips draining all life colour and replacing fear. I have seen Steve cry, when our son died at birth, when his mum was diagnosed but never for me. Guilt again surged through me. I dreaded what would happen when we had to finally break this to our children.

Over the next 10 days we numbly moved through our day to day actions. I called the school and spoke with the head teacher. She was marvellous, “Send the children straight back, we will look after them, you look after you. We are here for you.” I couldn’t ever thank her for this kindness as these next few weeks were full of hospital appointments I would have been unable to hide from the kids had they been home. My 9 yo son would have become suspicious and we did not want to outright lie to them. The next appointments were as much fun as the first. First up, Vac biopsies, a new experience I would highly recommend for the next Bond movie. ‘Ah Mr Bond, tell us the secret code or we will Vac biopsy you.’ ‘No problem: 32-56-78!’ I had 1 on each boob and that was 2 more than I ever wanted again. After the biopsy was taken the radiologist took me into her room to show me the scan pictures again and said “you know it’s cancer right?” Well I definitely do now. I was actually scheduled to get the results the next day! An MRI Scan followed this, this entailed lying face down on the narrow table with my boobs dangled into what are essentially buckets for 45 minutes. Numerous blood tests. A CT scan of my chest. Then I had the bone Scan with the radioactive dye injected into me like some Russian spy thriller. This again had me laid on a narrow table with the worlds slowest camera floating an inch above my nose working it’s way down my body. I found myself having to control my breathing at one stage as it was so close to my face for so long, I felt the tendrils of claustrophobia setting in. Surreal how life can change on a dime.

The consultant unaware I now knew this was cancer saw me during all these tests. He confirmed the confirmation! I have a 12.3cm DCIS in the right breast some of which has broken out of the ducts and is in the breast tissue. The biopsy from the left breast is benign! It had not spread to the lymph’s either! The MDI will decide when all test results are in as to which way round my treatment will proceed, chemo or bi-lat first. I almost floated out of the room. I had spent 10 days imagining everything from double mastectomy to my funeral. No hair and no boobs seemed to be a win!

As I had become radioactive during these tests and was told I was not allowed to be within 1M of the kids for 24 hours we felt we needed to level with them. So one Friday evening, when our family normally ‘parties’, we sat our young children down and broke the news that mummy had a disease. This meant that I was going to have to take some strong medicine which might make me poorly. I might loose my hair, and that in a few months I would have an operation meaning I would be in hospital for a night, but they could have MacDonalds then! Our son asked straight out “are you going to be alright?” I said “yes.” He said “ok. Can I go on my iPad?” 🙄 our daughter very cleverly asked “what’s this disease called?” “Cancer” I said. She then got upset saying she didn’t want me to loose my hair. At this point my hair was half way down my back and like all little girls she loved playing with my hair. I told her she could help me pick a short style she liked to help get her ready for the inevitable hair loss. This had the immediate effect of cheering her up and she raced off to get my iPad and look for styles! They have both continued to make us proud, coping beautifully with all the changes this fucking disease has brought to our life in this short time.y

I decided for many reasons to cut my hair short. To beat the inevitable, to make the loss less traumatic for the kids and us, and to donated it to The Little Princess Trust so some little kid could have their own hair. This simple act went on to raise £1600 for the LPT as I broke the news of my diagnosis on Facebook to my family and friends around the world. These wonderful humans donated their hard earned money in a show of strength and love I’ll never get over 💖

Now with my new pixie cut I was ready to face the challenge. St Barts called me to attend the Oncology Department and meet one of the consultants. Steve came with me. We took the tube and in a pre-chemo Brain moment I took us to The Royal London 🤦🏼‍♀️ Realising my mistake as we arrived at Whitechapel we jumped off the train and into a black cab. I was fretting that I would be late and the whole process would be delayed. We raced into the George the V building only to discover this place NEVER runs on time! We then sat in the waiting room for an hour! We were finally called in to meet our oncologist a gorgeous lady in her 40’s with a fabulous sense of humour and oodles of compassion. Steve and I both felt for the first time since this nightmare began that we had a fighting chance. The wonderful NHS was in our corner!

The Onc discussed what was going to happen to me going forwards, 8 rounds of chemo, then a double mastectomy and then 9 months of more chemo. Fuck me!

Breaking the scary stuff down to clinical names:

Doxorubicin and Cyclophosphamide (confusingly called AC.) Will be administered via intravenous drip every 3 weeks. These drugs interrupt the development of the cancer cells. They also interrupt any other fast growing cells in the body. I.e.: hair, nails etc.

Then the operation. Followed by more chemo Herceptin and Docetaxel. Evidently out of all this shit it seems I’m lucky? I’m HER2+ and Oestrogen + so I can be given Herceptin which will act on the receptor on the cancer cell. And the combined chemo drug moping up any stray cells should see me through this safely.

So I’m being cured, not fighting to survive. I can handle that. Shit, I can handle anything but that.

Preparing yourself for chemo is a strange thing. A group of my wonderful friends put together a ‘ChemoPack’ which consisted of a cuddly dressing gown, silk pillow cases, herbal teas and a million other things I would never normally pamper myself with. I have used every damn one of them! Bliss. Then my 2 sisters arrived at my door step with another ‘ChemoPack’ wtf? This must be a ‘thing’? This pack contained lip balms, a fan, glass straws and about a years supply of handyhankies! We sat in our coats on chairs in my car park! I don’t feel alone going into battle. I’ve got this and everyone else has got me. I have been reduced to tears on more than one occasion during all this crap by acts of kindness. When my wonderful friend Rupa arrived with food and an envelope containing cash my oldest & dearest friends had collected for hospital Uber rides! Another was when my friend Linda turned up on ChemoEve with her husbands lasagna he made us in a show of solidarity. These little acts carry Steve, the kids and I through this, dampening the friction allowing us to walk into the unknown with courage.

I thought long and hard about my trip to St Barts for my first round of Chemo. I was offered a lift by Kerry and wrestled with feelings of guilt, why did I need a lift, at this precise moment I was still just Gill. I had not had any treatment. I could get the tube and Uber home. Kerry would have to travel from Southend all this way. I don’t know how long I’ll be as this is my first rodeo and I’d worry myself sick she was getting parking tickets or propositions I would not be witness too! So on Sunday afternoon I finally made my decision. I’ll tube there and Uber home. Simple.

I packed a suitcase, I shit you not. All these ‘chemo packs’ were seriously causing FOMO what if I needed something and I hadn’t taken it? So a fluffy blanket, lip balms, hand creme’s, sweets, iPad, headphones, note pad, pen, 15 packs of tissues and a cuddly toy were dragged behind me as I headed to Snaresbrook. It had been raining but was now trying to brighten up, a bit like me. I stepped onto the platform just as the train pulled up, that was my first bit of luck. As I stepped from the damp platform onto the Lino of the tube, my lead foot slipped out from under me and my trailing leg dropped down the GAP between the train and platform. I have no idea how I managed to drag my Hogwarts ready suitcase onto the train before the doors closed on my leg. With Herculean effort I pushed the door open enough to drag my bloody leg (and slip on shoe much to my amazement) into the carriage. I sat on the floor stunned and bleeding profusely. I remember looking at my fellow passengers, raising my eyes to the fluorescent lighting and say “fuck me” but this didn’t seem to initiate any human reaction. Be it COVID, London or just those bunch of buggers. They all just sat there staring at me. I managed to drag myself up and hop, limp to a seat. My leg was pouring with blood when I realised I had half of Kleenex in my bag. Whilst mopping I noticed there was a teenage boy sat opposite me, I’m convinced he used me to increase his TikTok views. I’m viral somewhere.

When we pulled into St Paul’s I hopped, dragged myself off the train and limped to the escalators. As I stepped out of the station I saw a black cab with that fabulous little orange light, lit! I stuck my hand out and said “could you take me to St Barts please?” He laughed and said “it’s only a 2 minute walk love!” To which I stepped back and flashed him my leg. He winced and said “jump in!” I told him my tale of woe and the kindly gent took me as close as he could and wouldn’t accept the £25 fare..! Joking! I then hopped/limped/swore my way into the hospital. At the doors was the COVID gate keeper. As soon as he took one look at me and my gammy leg I was whisked up to the 7th floor (chemocentral) before you could say Anastrozole, I had a glass of water and a blue glove filled with ice on my leg! When I was eventually called into the unit it was discussed as to whether I could actually have the chemo with the injury. I was made to sit with my leg raised for an hour to see if it swelled. If it did I was to go for an X-ray. It didn’t. Thank goodness. Who the hell says thank goodness it’s not broken, now I can have poison pumped into my body? The unit was a sad place. I don’t know exactly what I was expecting? A party like atmosphere? Egg and spoon races up and down the corridor? But it was, sad. A man was hidden away in his cubicle behind a curtain vomiting, the woman in the cubicle next to him was eating fruit. I decided not to look in that direction again and hastily popped my headphones on. When they realised I was only a clumsy idiot not a broken bi-ped twit, the chemo started. As the nurse put the cannula into my wrist I struggled with a fight or flight emotion. The difference between knowing this stuff will save you and that it will make you wish you were dead is a fine line. I chose to look at the woman opposite me who was wrapping and rewrapping her head in a flowery scarf. Each time ending up with annoying long unwanted tail. When I looked back the line into my wrist was running red with the first drug. This, the nurse said would colour my pee, don’t be shocked. 2.5 hours later, I had forgotten this warning and when I went to the loo nearly let out a Yelp. So with a body full of poison, a leg full of plasters and a head full of a banging migraine, I called an Uber and got the hell out of there.

When I got home the emotion of the day caught up with me and I dissolved into tears in Steve’s arms. A day I won’t forget as much as I wish I could.

I was fully expecting to feel awful and not be able to get out of my bed. In fact I felt fine. I was nauseous definitely but had so much energy poor Woody was dragged out on 2.5/3 hour marches! Dog Walker mates saved my sanity many times in this first round, standing in muddy cold fields making me laugh. Introducing me to a ginger smoothie that abated the nauseous feelings for a while. One day I was stood there discussing the benefits of a NutriBullet… my life is truly that exciting. Upon returning home I opened the door and saw a brand new boxed NutriBullet. My jaw dropped, Steve came into the kitchen and said “some lady with a dog called Fred dropped this off for you?” I was completely dumbfounded. I text one of my fellow dog walkers and asked if they knew anything about it. She said that one of the ladies stood with us on the field that day said she felt compelled to buy it for me as this was the anniversary of the death of one of her dear friends from bc. I balled like a baby.
The side effects began to gather pace, leaving me with a constant dread I was going to throw up, constipation that lead to horrible stomach aches and a lead footed lethargy, I simply couldn’t put one foot in front of the other. Come school home time I was up and moving round, I’m resolved to not letting the children see me as fragile. It took monumental effort to smile, listen, play and shove someone’s loving cooked meal in the oven for us all…. these people all get a special place in heaven. But when week 1 was over.I sprung back to myself.I suddenly got the urge to do the Mount Vesuvius of ironing. Ok not completely back to myself then!

The following week, I was walking Woody round Wanstead Park, it was an overcast, chilly morning but I was loving my audible book and head space. Then, the phone rang. “Hello I’m a Consultant from Whipps X.” My peaceful day shattered. “We have the results of your biopsy on the left breast and the MRI scan results.” I knew this was gonna be another ‘moment’ I just wanted him to say it all quickly. “We have found areas of concern under the left armpit and in the left breast.” My breath caught in my throat. “What does this mean?” He took a deep breath and said “I’m afraid you are going to have to come in for more vacuum biopsies.” Noooooooo my head screamed “ok, when?” My mouth betrayed me. “Why is this needed if I’m having chemo and a mastectomy?” I asked. He replied “we are concerned it may be a different type of cancer than the one we are treating as the biopsy previously taken is reacting to different markers.” Fuck “right.” When the call ended I plonked onto the grass and cried. I allowed myself dread and fear. Then I rung Shelley and we found reasons to laugh. Fecking Jekyll & Hyde. Shell said “I’ll take you there and walk woody whilst you are in” she won’t know how much strength this gave me and I was almost looking forward to it just so I could see my effervescent friend again. Stoopid COVID.

Nnnnnineteen…..

shelley arrived at my house on a gorgeous hot sunny day and I asked her to walk with me to the hospital across Hollow Ponds. I would leave her and Woody at the tea hut and rejoin her there when the Vacuum Biopsy torture was over. Just strolling along chatting to my upbeat mate made this an easier day. Woody chased about like a loon and we laughed at our lives misadventures together. Then all too soon, I had to leave them at the hut. Off I went. As usual the Breast Clinic staff were happy and welcoming. I looked around at my fellow waitee’s, all at different stages of the journey. I was now in a hat.
I knew my hair would fall out. I just wasn’t expecting it to be so horrifying and for me to have a knarly old swede. I was stood in the shower on day 16 post chemo. I was already nervous of shampooing my hair for the fear of pulling it out. Suddenly my face was covered in my dark, short hair. My hands were covered and I couldn’t shake it off, I looked down and the shower tray was black. I felt panic rising as I tried to get the hair off me, conscious that I might be blocking the drain. I bent and scooped the mass of my hair up in my hands and threw it down the toilet. Shuddering breaths warning me to get control. I knew this would be a scary time, but I was still unprepared. I couldn’t look in the mirror. I was appalled at the thought of Steve or the the kids seeing me. I now have copious amounts of hats stuffed in the bathroom and my bedside drawers. Eugh gross.
Anyway back to the clinic. I was called into the same room with the same radiologist and nurses I had seen my first time round and this made me feel confident. I stripped down and assumed the position. A female consultant came in and they looked at the screen, split with a scan picture from the MRI and the live shot now with the ultrasound wand. The cons. Pointed to a faint white line running along the bottom of my left breast. She explained that as it was so fine they would need to take a lot of biopsies, would I be able to manage 9. 9? Are you bloody mental? I nearly passed out at 3! “Sure, if that’s what you need?” My treacherous mouth spewed before I could clamp a handover it. Again I felt the need to regale the room with stories of my life gaffs whilst they vacuumed my boob, literally. I watched the machine as the cutting blade rotated, slicing my breast from within,I could feel the blade bumping my rib cage, most unpleasant but not painful in the slightest. Then the machine passed 9. Then 10? The next time I looked we were on 12. The radiologist must have seen me clock the number and said “look you are as tough as old boots, can we carry on? I just want to get enough that you don’t have to go through this again.” My, she would make a great saleswoman. So I carried on boring the bejesus out of them as they bored into me. The machine was finally statisfied at 19! This the radiologist informed me, was her career record. She had never taken 19 biopsies from one patient, or one boob….. yay I’m a record breaker 😩 God did I pay for that for the next 3 days. Results due later this week. I’ll keep you posted. If they say they didn’t get enough, I’ll vac biopsy them. Anyway, they bandaged me up and I strolled back to the tea hut. A coffee awaited me and a happy spaniel. What could have been a bad day was again made right by simple acts of love and friendship.

Steve and I had another appointment, a first for both of us. A wig fitting. I was not filled with excitement at this appointment, but had to accept I was not pulling the Blackadder series 1 look off. I made Steve stay outside whilst I tried the first wig on. I looked like my mother. I went out to model her. Steve stared at me and said “sorry is that your hair or am I looking at a wig?” Confusingly for Steve he had gone from seeing me with hair to hats and no in-between. I laughed and said this is a wig. “Oh! I like that! It looks like your own hair!” I knew I was going to train it home with this bad boy then. I also knew I needed to brave the shave and get rid of the remaining hair. I asked the kindest of souls Sam to help me. She was so kind and understanding. I felt ugly and uncomfortable in my own skin. I wanted to run away from this bald, bruised unrecognisable Gill. I have to say of all the side effects the hair loss has been the toughest of rides. But now it’s done. It can’t happen again. Thank God. I walked to the school to collect Jess. It was the last day before Easter holidays and the teacher had given them all Kindereggs so to be fair, Jess didn’t look at me for the first 100m of the walk! The school mums were laughing, waiting for her to look up. Finally with screwed up, squinting from the sun eyes, Jess looked at my head and said simply “I like the colour.” Then she carried on eating her egg! James on the other hand was not impressed and asked if I would wear my hats again. Poor kid. I know he is trying but it’s just so much change so quickly.