Can’t get used to losing you, no matter what I try to do, gonna live my whole life through .. loving you. Jerome "Doc" Pomus and Mort Shuman - 1963
It was Sunday supper. I decided to talk a little bit about the progress of my treatment to the boys. They don’t ask many questions and don’t talk about it too much so I try to subtly drop tidbits into day to day conversations. “This week I am going to the hospital to have some more medicine. And then it will be Christmas and then New Year, and then I will only have to two lots of medicine and hopefully that will be it. That’s good isn’t it?” I looked at them for agreement and there were little nods. “Hopefully it means that I my hair will grow back properly so that by the summer I won’t need to keep wearing my hats and scarves.” My little Harry-Potter-looka-likey stared at me intently. “I don’t think of you with hair now, I have got used to you not having any hair.” I smiled at him gratefully – then poked my Brussels sprouts around my plate – I wasn’t sure whether to laugh or cry. I couldn’t work out whether he was saying that to make me feel better – he is very thoughtful for someone of such a tender age. If he really doesn’t mind, if he doesn’t find it worrying, scary or embarrassing, then I am pleased. But I felt slightly mortified that if I was to be hit by a bus tomorrow his lasting memories would be that of me going to my grave resembling Shooting Star's George Dawes, not how I have looked for the previous ten years of his life. He has managed to get used to me losing my hair – better than I have.
Now, don’t get me wrong, if you don’t actually know me then I ain’t going to pretend that I am an oil painting – and if you really do know me then you will certainly know that I am not. But, with a bit of time and a lot of energy I was previously able to scrub up OK. Now, if Susan Boyle scores a one and Martine McCutcheon a ten in the looks department, then on a good day I could possibly push a four, or even sometimes a five. Obviously if we were talking about our singing skills then the balls would be reshuffled with Subo on a ten, Teens on a five and me on a one – I will say that before someone else kindly points it out.
I didn’t cry at Sunday supper but I am going to admit to you that there have been lots of tears over the last two weeks. Not sad little tears welling in my eyes and slowly and deliberately toppling over my cheeks and down my face. No, this crying has left me lying hysterically on the kitchen floor ... and cowering in the corner of my bathroom like an injured animal. My world has felt deep and dark. Why? Lots of reasons – none of which I can blame on the steroids on this occasion.
It started about a week after my first session of Killer Chemo. Killer Chemo was not too bad – I got aches and pains for about four or days, but they were manageable with some pain killers. I think the thing that got me more was a horrid swollen tongue and throat which lasted for about ten days. But after these side effects wore off I got a cold ... and swollen glands ... and a tickly cough which turned into a hacking chesty cough. It got so bad that at one point I lost my voice - the kids thought it was great. On a bad day I sounded like Whisper in the Bond films ... on better days I acquired at Demi Moore rasp. Two weeks on I still haven’t managed to totally shake all the symptoms off.
Now nobody likes being poorly but in my mind I started getting anxious about two things. One, that my white blood count must be dipping so low that my next chemo was bound to be postponed for at least week – and with three more sessions to go that means my treatment pathway could actually get extended by three weeks. In fact my chemo might not be done and dusted by the end of January, but flow well into February. Secondly, as someone who is prone to chest infections I was becoming paranoid that I could end up with bronchitis, or even worse pneumonia, that would result in me being admitted to hospital, which again mean delays in my treatment. I was so sure it would happen I took myself off to Marksies so that I could prepare an emergency overnight bag. Now, I might have been ill but I couldn’t consider going in to hospital without new matching nighties, dressing gown and slippers. I call it my After Eight Collection. Nah .. not because it is risqué ... but because of the mint and chocolate colourway ... so this season dahling.
Then on top of all my grotty cold and cough symptoms I then developed a really itchy red hive-y rash across my chest – very fetching – not. I wasn’t sure if this was a late side effect from the chemo, as the steroids had worn off, or whether I was allergic to the eye drops I was taking for the conjunctivitis ... yep, I had an eye infection too. Oh, and on top of all that, my swine flu jab decided to double the size of my arm ... and hurt. Oh, and top of that ... and on top of that ... my fingernail pads started to feel sensitive and I was conviced that the chemo was going to leave me nail-less and unable to type my pleading e-mails and texts to my wonderful army of supportees which are helping me get through this.
Then, in addition to this vast number of physical ailments I then got mentally low too. As my mind was coming to terms that my chemo could finish in about six weeks, it then started to consider the next step – surgery. Now, I am going to be very honest with you and tell you that I like my boobs. No, that is an understatement – in fact I love my boobs. In the past I have read articles of women who have had to have a mastectomy – some even choosing to have double-mastectomy proactively due to a strong history of family breast cancer – and I have recoiled at these stories. It could never happen to me – I could never imagine life without my boobs. I can't bear the thought of them scarred, frazzled, disfigured or ... removed.
Some women say "Why on earth do you want to hold on to a breast that is trying to kill you?" But my response is that it is the tumour - the horrid Yucky Lump - the thing that was certainly not invited into my body - that is trying to kill me - not my beloved boob.
Last year I went to a Christmas party ... aah ... those halcyon days. My little friend – the one who has one glass of wine and is suddenly no longer backward in coming forward in saying what she has on her mind – walked into the room and said “It is a shame it is not fancy dress, you look like Jessica Rabbit.” I looked at her quizzically and realised she was glaring at my heaving bosom in my red silk dress. I laughed. Even my late mother, who was also rather well endowed, but also quite conservative (with lower and upper case Cs) used to say “if you have got it flaunt it”.
And I am not the only one to admit that my boobs are part of my character. A few months ago a former colleague and old friend – who will remain nameless - rang me and we had a long discussion about my diagnosis. First of all we talked about the practical stuff – no longer being able to go to work – going for treatment – my hair falling out – then we moved on to the mental stuff. Missing the social contact – the lack of daily routine – my long term outlook – my boobs. “The problem is my boobs are so me,” I complained. “Paula ... the dark one ... big brown eyes ... curvy with boobs.” “I hear what you are saying”, he replied diplomatically. “Having sat beside you for a number of years I wouldn’t say your boobs are the very first of your characteristics that I recollect ... but I will admit they do come to mind.”
He is back in my life!! I thought after I made the flippant remark about turning up for my next appointment in my red and black lacey corset that he was refusing to come out from behind his desk. I thought I had lost him. Yes, I am talking about Dr O ... the oh-so-luv-ver-ly Dr O ... my Oncologist. I went to see him Wednesday. He kept me waiting again ... at least an hour ... but ... don’t tell him ... I would have waited two or even three hours to see him. Cos he is so luv-ver-ly. Now this was just a checkup appointment and as I waited to see him I wondered if I would be whooshed through to make up time - but I needn’t have worried. Cheeko has Cheeko Time – Dr O has Dr Oh-so-luv-ver-ly Time – you walk in to that consulting room and all his attention on you. Making sure that you are receiving the right treatment, that you are not suffering from horrid side effects, that the medication is working. He listens, reassures and cares.
He first asked me about the Killer Chemo and the side effects I had endured. I explained and said they were bearable. I could live with the joint pain if it lasted only three or four days. I said that it was my sore throat and swollen tongue which I found the most distressing and most uncomfortable. He said that he could prescribe some mouth washes to help with those which was cheering. He then went on to say that Dr Gillies had noted in my file from at my previous appointment that the lump had appeared to have shrunk dramatically. I explained that this had happened early on – between chemos number two and three. “That sounds really encouraging. I think we might look to cancel your eighth and final chemo.” I could have hugged him – but he suggested that he take a look – so I stripped and jumped on the chaise instead. “Yes, that looks really positive,” he said. I then decided it was moment to go through the mental list of questions that I wanted answers to. I knew I had probably established the answers to many but I had built up the courage to hear the details from the expert. In hindsight, my timing was not ideal. I ended up having an intense conversation, lying half naked on my back, with a man I had only met on two previous occasions. After ten minutes I decided that I should get up and get dressed ... but that was probably not a good move ... I didn’t feel any more comfortable doing that. But hey, Dr O’s job is boobs ... in his mind boobs are probably two a penny ... though quite frankly you don’t get too many of mine to the lb.
“So, what percentage of neoadjuvant chemotherapy treatments result in lumpectomy instead of mastectomy?” “Quite a few”, he replied. So I pushed “But does it depend on how the lump shrinks? I can’t imagine that they all shrink in the same way?”. He replied “No, they don’t. With you we may have to go for the mastectomy because your lump has shrunk so much that we may not be able to find where it was. If we can find dead cells or calcium particles then we could possibly go for the lumpectomy, if we can’t then we will have to go for the mastectomy.” I didn’t have to tell him I was crestfallen ... or chest fallen ... he could actually witness that. They may have lost my lump ... but that might mean a mastectomy ... just what I didn't want! “The thing is, there are many benefits for giving chemo before surgery. For me, as an Oncologist, my priority was to get the chemo in there to stop your large and aggressive tumour from growing, and hopefully make it shrink. By not doing the surgery first then we can see what progress we are making, we can hopefully see that it is reducing. It also means that if it is having an impact on a 6cm tumour like yours, then we also know that it blasting any lose cells which are floating around the rest of the body. For me, if we can offer the lumpectomy that is good but the priority will always be to get rid of the tumour.”
"Very, very occasionally we don't do surgery or radiotherapy but in your case I am sure we will. Because you are Triple Negative (a type of cancer I have) this is it - there is no further treatment or medication for you - we need to throw everything at you now to make sure that it is gone and to stop anything coming back."
I knew what he was saying ... and of course he was totally right ... though in fairness my concerns about having surgery, but particularly a mastectomy where all of my breast removed, rather than part of it is not purely cosmetic, I know that the more drastic the surgery the greater the risk of infection, extended recovery time and possible longer term complications.
You know, I have been kicking around this parallel-cancer-universe for some time and am not complacent. I know that in comparison to many many others I am ‘lucky’. I know that there are women out there on the same or similar aggressive chemo regimes who are not seeing the same dramatic results that appear to have happened for me. I know that there are women who are not seeing their lumps shrink and that for a few the lump continues to grow. There are also those who are experiencing horrific side effects from the chemo, who end up in bed for nearly the three weeks of their cycles, or become poorly through severe reactions and end up at A&E, or become chronically ill with life threatening conditions and end up in hospital. There are also people who have fought cancer to see it return, people with secondary cancers, people with terminal conditions who will not live to see this Christmas, let alone next Christmas. There are people who have every right in the world to turn around and say to me “You are a totally ungrateful vain cow. You have had treatment and it has appeared to have worked well. That is what matters. Yes, they may have to remove your boob but you could be cancer-free. You may have a pretty good chance of going away and leading a long and healthy life. I have a brain tumour – there is no option for me to have my head chopped off.”
“So what about my bloods?” I asked Dr O. He nodded positively. “They are absolutely fine. You can have your chemo tomorrow no problems.” For the second time I resisted giving him a big hug, but instead I gave him a beaming smile as I walked out of the door.
Chemo went fine. My veins decided to behave and we didn’t have the bursting problem that I had to endure before. “Right", said Chemo Nurse G - yes a different nurse again - “all done, you can move into the lounge.” Oooh, I wasn’t sure about that. Up to now I had enjoyed sitting in my little private consultation room. As I walked out to the main area I felt like a ‘real cancer’ patient ... hat on my head and pushing the large drip stand. I stood in the entrance and I quickly tried work out the best place to sit. Being attached to the wheelie drip meant I couldn’t move quickly and inconspicuously. I took at seat against the back wall and looked around. This was ‘professional cancer’ land. What you imagine when you think of chemo treatment. Very poorly people who have moved in for the day or even days. They come prepared with books and magazines, iPods and packed lunches and teas.
I looked across at the chap opposite me. He was sleeping. I was surprised. Not that it was particularly noisy in the lounge but it seemed out of place. Then I realised that he was indeed in a bad way. There were four drip bags on his stand, which were going through to some kind of port attached to his nose, one of them was morphine. A girl came along and woke him by saying “Morning Bob.” Bob grunted. You couldn’t blame him – after all who is cheerful when they are rudely awoken. She was a dietician. “How is the eating going Bob?” He turned away from her and went in to his bag. I watched nosily. What was he doing? He got a large crumpled writing pad out ... and started to write his response. It then dawned on me. Bob couldn’t speak. Sadly he had lost his voice through something like cancer of the mouth, throat or oesophagus.
I believe in coincidences. I am not weird or wacky or alternative. But I believe in fate. That some things are meant to be. Accidentally bumping into old friends ... making a new friend with a stranger on a bus ... whether you get that job or new house. And yesterday, I think that it was my fate to sit next to Bob. Bob, who due to his awful illness could no longer communicate verbally. Can you imagine what that is like? You can’t talk to your friends, you can’t call anyone on the phone, you can’t even reply to the offer of “tea or coffee?” What would be like for me to permanently lose my voice? My job has ‘communication’ in the title. I speak to lots of people all of the time. By phone, in person, in meetings, presentations at conferences. What about my home life? How wouldn’t be able to ask the boys what kind of day they have had, cheer them on at a football match ... or shout at them for leaving bags, boots or clubs at the kitchen door. What about my girlie chats ... about lovely girlie things. How would I order a meal ... or a drink ...? No more singing or witty jokes. What means would I have to ask where they have moved the toilet rolls for the sixth time in six weeks at Sainsbury’s? How would I tell the ones that I love ... that ... well ... I love them. The list is endless ... bringing a whole new meaning to whispering sweet nothings.
Fate? On Thursday morning there was my wakeup call ... sitting right in front of me.
Bob or no boob? If you need to ask me the question then you have lost it.
