Breast Cancer at 29 – REALLY?! Chapter 5

Diagnosis

The results took a good week or so to come back. Again I tried to put it out of my mind; tried to relax and focus on the future and this awesome new opportunity that was coming my way. I handed in my notice at Capgemini and spoke to the HR director at the new place to ask them a few questions about the private healthcare benefit; Dr Raza had said I’d probably need surgery so it was reasonable to expect that I would probably have to use the health benefit to pay for the surgery. My old boss was understanding; he asked me if I would be willing to take time off in lieu of notice, seeing as I wasn’t working on any projects, so I gratefully accepted a few weeks’ gardening leave before I started the Big New Job.

I can’t really remember why it took a week or so to get the results back – probably because they needed stuff to grow. I wasn’t fretting about it, but there was something just hanging over us. I’ve never been good with stuff like that. I spoke to my mother-in-law about it and she wished me well for the results appointment. I was really happy for her because the following Monday after my biopsy, she was signed off by her oncologist, having been clear of uterine cancer for 5 years :0)

Exhaustion

My mum and dad were worried about me; it was becoming impossible to get a decent night’s sleep with Mollie around because she was 18 months old, not sleeping through anyway and had these angry molars coming through at the back, so she was in quite a lot of pain. At night, Andy and I would get angry and fight with each other about whose turn it was to get up for her; this was pretty normal but somehow seemed worse that week. Normally if I heard the slightest noise from her room, I’d be bolt upright with the Mummy instinct and straight into her room. I couldn’t put a foot out of bed or raise my head; I was just too tired.

How my Husband “Coped”

Andy has been the glaring hole in this story thus far. The important thing about this blog is its candour and the need for it, in order to tell the whole story. There are people who may be reading this who will have their own preconceived ideas about our marriage and subsequent breakup; they haven’t heard this from my perspective and thus far I haven’t felt comfortable talking much about Andy. Indeed there is still a lot of stuff I won’t say publicly out of respect for him.

There were a few occasions when Andy would get up in the night over that week and make a big deal of falling over onto the floor – I’d just hear this big crash, Mollie still crying and I’d be rolling my eyes. I knew it wasn’t a real fall; it was an “I’m making the point that I’m so tired, I’m resenting you for making me get up for her”, lazy attempt at getting me to get up for her instead. The falling used to wind me up something chronic; it was a tactic he regularly used. Once or twice, if I was feeling irritated enough, I shouted at him to stop being so bloody pathetic – “Yes you’re tired – I’m tired too!! Grow the fuck up!”. In the end I got so tired of arguing and middle-of-the-night fights that if I was able, I’d just get up with her and sit up in the living room till it got to 7:30am and time to go to nursery.

The horrific thing about this is that it continued well into my chemotherapy treatment and I was still getting up for her after chemo, feeling like shit, not getting enough sleep, because somehow Andy having work the next day seemed to trump that. It’s hard not to get really fucking angry when I remember that. It sounds like I am being unfair, but he shot at me during a row a couple of years later that “since you’ve been ill you always leave me to get up for her, you never do it any more!”. I find that hard to sympathise with.

If Andy was worried about my health, he didn’t show it much. He left me to it; his way was to try and distract me from thinking about it and if I got worried, make me laugh. It is an endearing quality – to a point – we always had a good laugh, but sometimes a good laugh isn’t what you need to get you through something like this, that could be major. Distraction from your thoughts isn’t what you need. What you need is to face it head on, have arms around you, kisses, encouragement, “I’m here for you.” to be said, and the actions to reflect the words. Solidarity in the face of the situation you’re in. Logistical support. That “C Word” show that was on the BBC – starring Sheridan Smith and Paul Nicholls – had me in absolute floods of tears for a very different reason to the rest of the population. Seeing how supportive Lisa Lynch’s husband was throughout made me feel so angry and bruised because I felt I had not had that during my own experience.

Health Insurance Nightmare

I get anxious as it is when I don’t know what’s going to happen in a situation. This extends to stupid, everyday stuff – I find it difficult to trust others to do their jobs properly, having been messed around so many times before. I struggle to accept mediocrity at times. When I handed my notice in at Cap, my lovely manager Sam told me my benefits would continue until my official leave date – 16th November. So I called Simplyhealth and took out a policy which would continue my cover from my leave date onwards. I wasn’t sure what the deal was with the new medical insurance and with all the worry about being halfway through tests and potentially something massive, I didn’t want to fuck with it. On the Wednesday night before I was due to meet with Mr Wood to get the results, I had a letter from Cap’s HR department confirming that my policy was going to be cancelled from 18th October. SHIIIIIIITTTT – how much does a biopsy and mammogram bloody cost?!

The next morning was Halloween, 2013.  I spent that morning before my appointment (I was on garden leave by that point) on the phone to Simplyhealth to sort this out. They were amazing and offered to bring the policy start date back to 18th October and start a new claim. It just meant that everything would need to be processed by a different department now. That took ages – trying to get them to call me back, chasing etc. I grew horribly familiar with their AWFUL hold music. They told me to ring them back after the appointment with Mr Wood to tell them how it went and we would go from there.

Back to Mr Wood

I was booked in to see Mr Wood at 2pm. Andy managed to get half a day off to come to the hospital with me and we sat, waiting, for 30 mins past the appointment time. I started to get nervous; his last patient had gone through at 2:05pm, then came out a few minutes later and I knew I was next, because he’d come out and spoken to the receptionist and I had overheard my name. When he came back out to Reception again, he was asking them if a fax had come through and I heard my name again. I guessed that he was waiting for my results. Why wouldn’t he have my results already, I thought? Surely he’s had it all beforehand? These thoughts only served to make me more nervous about what I was going to find out. I was like if this is cancer I’ll go fucking nuts. I don’t know what I’ll do.

Eventually he called me through, so Andy and I went into this little room just off the reception area. Pinehill hospital is at the back of Hitchin, at the top of a hill and tucked behind some trees. It’s quiet and the room is bright and airy. I sat down, made small talk; nervous humour. Then waited for him to speak. Even now his exact words are difficult to remember, but I believe they started with “We completed the ultrasound and Dr Raza noticed something, so he requested a mammogram.. The mammogram showed a large lump, about 5cm across….” I can’t remember much else, but what I do remember was him saying that they had also noticed some enlarged lymph nodes in my armpit, so they took the biopsies from both areas.

True horror

These revealed the lump to be malignant, so “you’re going to need some chemotherapy”. He didn’t say it was cancer; not directly. The poor man had had to tell thousands of women this news throughout his 30-odd-year career. This was the method he chose. I just stared at the window. I felt horror wash over me; pure and absolute horror. I didn’t even know it was possible to feel horror so very truly. He started to explain that I would need chemotherapy before they could do any kind of surgery, because it was large in proportion to my breast size (I’ve always been a 38B/C depending on where I shop – never particularly large up top) and it would need to be shrunk first. It was also found in my lymph nodes and he was waiting for the results of another test to check HER2 status. I had no idea what the hell that was. I had no idea what it meant that it was in my lymph nodes.

I think I started shaking. I couldn’t honestly believe this was happening. Flashes of scenes in my head – me with no hair, has it spread, dying, mastectomy, looking gaunt and skinny, unable to work, feeling sick, feeling weak. Eventually I think I looked at Mr Wood  and said “Just take it out, take it all out. Get it out of me.”. Andy asked a question, I think. It was just going round and round in my head – “What the actual, absolute fuck?! Cancer? Me? What the fuck?! I’m gonna die?!”.

It wasn’t until I thought of Mollie, growing up without a mother that I completely lost the plot. Anger flooded me. It’s an emotion I have never been able to control very well. I don’t lash out, I just cry. I cried out loud. I made no attempt to do it quietly. I allowed myself to feel it all and it felt like it wrecked me. Andy held me, saying “Shh…you’ll beat this.”, trying to calm me down. Mr Wood decided to leave us alone for a few minutes and I then started swearing, shouting “What the fuck?!”. I was in a paroxysm of tears. They must have been able to hear me in the waiting room, screaming the place down. It must have been disturbing.

On with it

After a short while, I came back down to earth and realised where I was. I had nothing left. I just stared and stared and stared into space. I didn’t say anything more; I never made a sound. I was still filled with horror and shock, disbelief. When Mr Wood came back in with some forms, he asked me to go and have a blood test there and then. He then told me he would need me to have a body scan and that he would get me booked in for tomorrow. I would come back on Monday evening to see another doctor. He didn’t say more than that; his experience would have told him there was no way I’d remember much more information than facts at that stage, so he kept it brief. I know he found it difficult. His body language changed; his voice became softer. I can imagine it must be one of the most intensely difficult jobs someone has to perform, telling someone they’re critically ill, or going to die. The only near comparison I can consider is a police officer having to tell someone their loved one has died.

There was a knock at the door and a nurse came in; she had obviously been told what was going one because she was so – I want to say full of pity – but she wasn’t. She had a quiet and dignified sympathy. Sorrow even; possibly due to my age, I don’t know. She led me gently down to Pathology, I sat in the chair and she took some blood. She then gave me a leaflet explaining what would happen tomorrow, how I was to have a CT scan, how I needed to have a full bladder when I arrived and I needed to arrive an hour earlier than the appointment. I was almost catatonic at that stage, so Andy took the leaflet and the letter. Mr Wood stood in reception and explained that he would see me soon, before we left.

Wine

Andy asked me what I wanted to do next. It took me a while to talk, but eventually I said “I want a burger.. And I want wine.”. I’d been dieting for so long – shunning carbs and saturated fat – today there were no fucks given. Mollie was in nursery until 6:30pm so we took advantage of that. We parked the car and went to the Pitcher and Piano, ordered burgers and wine and sat down together. Andy asked me if I wanted to call my mother and tell her. I couldn’t face it. I wanted to wait and they could find out when they called us. It didn’t take long for them to call. Andy took the phone outside to break the news to my mum. Time went by very quickly for me then; by the time he came back in he had spoken to both my mum and his mum. A meal out helped a lot.

Kick her while she’s down

When I got home, I called Simplyhealth, told them the outcome and they told me to expect a call back from a nurse case manager within the hour. My parents arrived at about 5pm; I remember thinking I wasn’t sure why, but I was so glad they had. They had picked Mollie up early and were playing with her and her toys while I talked to the nurse case manager, who was really helpful. She asked me what my treatment was going to be so I told her what I knew. I then checked the post and found a letter from HMRC demanding I pay £4,000 in underpaid income tax from 2 years ago when I was contracting. It was quite right – I needed to pay it – but the unfortunate timing! Oh, and it was due by the end of November; late fees would be applied if it went past that. Yay, go HMRC.

My mother-in-law called, telling me she was so sorry about my results. She was gutted for me but still on a high from her own passport out of Cancer Land that Monday. She kindly told me that and whilst I understood completely what she meant….I wasn’t in the mood to hear that. “I’m sorry you’ve got cancer, but yay me!”. I became confused and tried to put myself in her shoes in order to ease the discomfort I felt; tried to understand why somebody would think it was a good idea to say that to somebody the very day they’ve been unexpectedly diagnosed with breast cancer at age 29. I decided to let it go and just take the empathy and goodwill behind it.

A sick person now

That night I kept crying all the time. I felt alone. Andy’s friend Jason came round and the two of them chatted away about computers and games; I sat on my computer googling cancer stories (most of them weren’t about successful recoveries), reading the Breast Cancer Care website and just unable to believe that was my world now. I was one of those people. Thinking about how I was going to get through this – maybe I would end up dying. Maybe all this work, study, motherhood – attempt at marriage – was all for nothing. Then anger at the fact I’d wasted some of my life, knowing in my gut there was someone still out there for me. I knew it was going to be a difficult road ahead.

I didn’t feel much like saying anything to anyone, or posting Facebook statuses. At one point I cried quietly while the two men talked, before taking myself off to bed to cry myself to sleep. Never had I felt such despair in my life, such absolute despondency and fear. Suddenly I was going to be thrust into a life of hospitals, drips, nurses, doctors…machines, having only really had minor surgery up to that point. I was now a sick person. What fragile sexual attraction my husband had to me was going to disappear when he saw me with short hair. He’d already stopped fancying me when I was pregnant; justified it with “well I fancy you now” after Mollie had been born….yes love. You really know how to make a girl feel special. I’d leave my parents, my daughter, my cats, my sister; I’d fade into memory and I’d never see my daughter become an adult. There was so much I didn’t know; I didn’t even know how bad it was, or what type of cancer it was; I didn’t even know that I was going to see an oncologist the following Monday. I kept touching the stupid bastard lump; I could feel the edges now and it still felt a bit bigger across the top of my breast. I cursed it, lamented it. I wanted rid of it. But I needed to understand how I felt about it and that Halloween was not the day to even try that.

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