If I were ever to write a book about my brush with cancer that would be the title. People look horrified when I disclose I suffered a recurrence almost ten years after the initial bolt from the sky. Inevitably follows the question, ‘Is everything ok now?’. Implied is are you cured now? This is one question I don’t know how to answer. So far so good, it has been almost seven years clear. But we have been here before. The magical five = remission and the even more mystical ten = cure, or so I was led to believe by my well meaning consultant, who was obviously an optimistic soul.
I am no expert nor am I medically trained. But in my humble opinion I don’t think the word cure and breast cancer can be uttered with 100% certainty with the same breath. I don’t know about other cancers but it seems to me that recurrence is very common amongst the women I have met since 1998 and their acquaintances, friends and families. Maybe more research should be done to look into why and what if anything can be done to lessen the chances.
I couldn’t have had a better prognosis; they even claimed it was pre-cancer, DCIS which stands for Ductal Carcinoma In Situ, which to the man in the street means it is still contained in the ducts. However this was the bit I couldn’t get my head round, I still needed surgery as in time it will definitely become invasive. One the one hand I was told I was very lucky, then the feel good factor was snatched away by the extent of surgery required. There wasn’t even a lump, for goodness sake, just some abnormality.
I was told there was no rush, I had plenty of time to get used to the idea and make a decision. Ah newsflash, doctors are not God, no offence, doctors but one did misdiagnose me in the first place and this consultant proved to be wrong. There was a 5mm invasive tumour already in my breast which was only revealed during the operation. Luckily I went for a second opinion and didn’t have to wait the eight weeks for an immediate reconstruction, as my consultant was also a plastic surgeon.
Nevertheless, the prognosis was still excellent. No chemo nor radiotherapy required. Off you go and enjoy the rest of your life. This blip would not shorten my normal lifespan, I was assured.
Well guess what nine and a half years later … I had the lump right at the bottom of the saline implant. I recalled the doctor saying that it generally has a ten year lifespan so I wasn’t too bothered. Quick call to the Marsden, they’ll book me in for day surgery, whip it out, put in a shiny new one and off I go again…
Irony is I was comforting another lady who seemed very anxious in the waiting room while reading Ian Rankin and that perpetually drunk Rebus. You know to start worrying when the senior registrar ignores your question as to if everything was ok. Then disappears and summons the consultant, who incidentally was someone I’d never met. Then a mobile Ultrasound Scan is wheeled in, didn’t even know they existed; trust me when the machinery comes to you that spells bad news. The cold gel is applied and spread and then the immortal word:
It’s not the implant
at which point I went into hysterics. The consultant was far from sympathetic.
Surely Mrs B you must have had some idea this might happen
Ah actually no. They had taken everything so I assumed in my ignorance that there was nothing for it to come back. I worried about the other breast but sod’s law it was the same one. A microscopic cancer cell left behind, undetected by the naked eye? Who knows? Because I didn’t take the 5 year course of Tamoxifen as I was still young and might want another child? Or just damn unlucky?
Nobody warned me that they have to always leave a bit of skin flap to sew up the wound and that was the site of the 2.9cm grade 3 invasive tumour. Grade 3 is the most serious before it has spread to your other organs, called metasis and signals the end. Then they don’t talk about remission or cure or treatment but palliative care and we all know what that means.
This time they didn’t tell me I was very lucky. Though one nurse who knew me from before did comment that at least I had nine years clear. The NHS machinery went into full drive and threw in the full armoury, surgery, chemo, radiotherapy and tamoxifen, in that order. As on cue the hair fell out in patches and I just had it all shaved off and was instantly transformed into a buddhist ‘nun’. All I needed was the orange robe and I could be an extra.
Lucky or unlucky? Well that’s debatable. Unlucky to have had cancer in the first place at a relatively young age, even more to suffer a recurrence when the finish line was flapping at almost touching distance. Lucky that it was such an excellent user friendly type of cancer the first time. Apparently DCIS is the best one to get if fate decrees you must have breast cancer because it is the earliest stage and it doesn’t usually recur in the other breast. And of course the piece de resistance is that the recurrence was detected in time for the tumour not to have spread and I survived while many good ones have gone before me.
I guess you win some and you lose some. Do I worry if it will come back? Hell yes, all the time. If it can happen once, twice, what is to say it can’t again? I predict it won’t be third time lucky. I have already decided if offered I will refuse chemotherapy. The cure was really worse than the disease. It damaged my heart muscle and almost killed me two years later.
At the time the bit of paper you sign warn you of a hundred million possible side effects but are you really in the right state of mind to read the small print. And though cancer has singled us out, we still are under the delusion that no, they have to cover themselves and warn you but it is not going to happen. Like you never think it is going to happen to you.
And at the time there wasn’t much choice. And my daughter was in her early teens. And I thought I was indispensable to my family; it turned out I wasn’t and was once again deluded as to my importance, but that is another story. Maybe best not go there. Even I am sick of hearing it.
Well the long and short is I am still here, alive and kicking and refusing to go quietly into the night. Maybe it would be more convenient for my ex if I had just disappeared off the face of the earth but someone is looking after me up there. Maybe Sharman is my guardian angel; someone I met on the cancer ward the first time round. She was only 40.
Moral of the story: Live life now. You want to eat that piece of yummy fattening high calories chocolate gateau, go for it. To hell with the waistline. You have always wanted to swim with the dolphins, do it. You regret never having studied Law, go for it, it is never too late. You are stuck in an unhappy, unhealthy soul destroying marriage/relationship, have the courage to end it.
Be happy, be free, most of all, live life to the full. Mama taught me a lot of good stuff but one disservice was to drum into me that looking after one’s needs is being selfish and that a woman must always put others first at the expense of your own health, happiness and even sanity. I don’t blame her personally, that was the way she was brought up. I blame thousands of years of male dominated Chinese culture. Cos with the sons a different rule applies. You can be as selfish as you like. In fact it is a pre-requisite of being a real man. If a man has an affair that is because he is a man and has needs. If a woman cheats then she is a tart and scum and will be disowned by all and sundry, especially her own disgraced family.
I used to be a perfectionist
until I lost my mind
then I was on a roll
left boob followed suit
Once is unlucky
twice is careless
cancer cells revisited
almost reached magic number 10
when some oncologists dare to mutter cure
I used to be a perfectionist
until I lost all my hair
couldn’t swallow eat
mouth ulcers galore
I used to be a perfectionist
till wheeled to the theatre
wondering if i’d live or die
what would they do without me
we are a family of three
I used to be a perfectionist
but then my beloved went awol
treatment did not suit me
depression made me a bore
I used to be a perfectionist
but not anymore
no not anymore
I like to think of myself as living with depression rather than suffering from; it puts a more optimistic and positive spin on the illness. And yes it is an illness like any other, a chronic one which some associate with being very serious or even terminal, no it means it is long term. No magic wand, fairy godmother to kiss it better, no amount of willing, pulling your socks up, pulling yourself together, snapping out of it is gonna do it.
I must have read all the self help books that were ever published and seen countless counsellors, courtesy of the nhs and privately when I could afford it. Psychologists and when it got really serious, as in suicidal thoughts serious, even psychiatrists galore. Weird that there are no resources to help you but once you say you would be better off dead, miraculously a whole crisis team turns up on your doorstep daily until you have seen the error of your ways. An appointment is made to see your local consultant psychiatrist. They can’t do enough. Is this to cover their arse? Not wanting to appear before the GMC or another enquiry? Lessons to be learnt? Lack of communication between the multi-agencies?
The crisis was of course the recurrence after almost reaching the magical 10 year ‘cured’ mark and the business going down the drain and the hubby having a nervous breakdown, how convenient, and there was selfish me expecting support. I was told off by ‘friends’, clearly they were his not mine, ‘Can’t you see the man is suffering?’ Excuse me who is the one with the 2.9cm grade 3 lump on the side of the total mastectomy? Grade 3 for you out there lucky enough to have escaped breast cancer is the most serious short of metasis, which means the cancer has spread, that is stage 4, which spells the end. Time to write your will, say goodbye to your family. Then they don’t talk about ‘cure’ but jargon like ‘palliative care’ is bandied about. That means they’ll make you comfortable, try to improve your quality of life, control pain but you’re going to die in the near future. Time to get your affairs in order.
I started off talking about depression and have digressed. But you know as well as I nothing is clear cut. It is all a murky messy slimy mess. Depression, cancer, divorce are all entangled in the web of my fragmented head and heart. The holy trinity of mind, body, soul and for me the three curses of my life the 2Ds and the big C.
I am convinced I am still here despite it all merely to irritate. I am good at that.
Watch this space. For further installments of broken heart, mind, body, spirit; coming to a good blog near you.
Over and out Mama G.
You know those games where you are confronted with a dilemma, if there was only one space left in the lifeboat or hot air balloon, who would you choose to save, husband or child? I am assuming all parents would say child without hesitation. It is our maternal/paternal instincts to protect our young. The adult can look after himself whilst the child cannot and his life hasn’t even properly began yet.
And given a choice between cancer and divorce I’d opt for the former any day. Why? You may be shocked by my choice. Cancer is a physical disease which if caught early enough can be treated. There is also a time scale to all the gruelling treatment, you know when the 6 cycles of chemotherapy will end, the 3 weeks of intense radiotherapy Mon to Fri. You can work out accurately to the day when all this will be over.
On the other hand, how long your stay at Heartbreak Hotel is uncertain. Will you ever check out completely? Maybe you will leave and return for a brief visit now and again.