As a brief little intro……… After my initial diagnosis in December 2005, the first hurdle to tackle was the lumpectomy, one in a long line of major events that I want to relay chronologically before discussing some of the resulting issues. After my first blog comparing Alice In Wonderland and how having cancer was like falling down the rabbit hole, now I want to reflect on each individual step, using my original diary kept during those twelve months. Though deeply personal (and quite weird to read at times) I hope my honesty in relating these experiences, helps others to know, that whatever they are feeling at their similar stages, they are not alone.
A little pic of my actual diary
So, lets talk about my lump. Having established that something the size of a pea was indeed a problem, the shock set in but the confusion was heightened so much more by the desperate need for information. No one could give us details until the initial surgery to remove the lump, so determining the degree of spreading, type of treatment necessary and overall prognosis. It was like waiting for major exam results all over again (and my nails didn’t survive that one either!)
‘To excuse the pun, this is all a hard pill to swallow. I keep expecting the floodgates to open, having been someone who usually cries at the drop of a hat, this is something I would have expected to render me hysterical but I’m more like the Sahara. I suppose I’ll accept it all when I go into hospital and the formality of it all will make it more real’
– Dairy, 24th December 2005
In between all the waiting, my mind was in chaos: one thing was certain, I wouldn’t need a mastectomy. That’s a good thing right, I hear you ask but though I practically begged for the removal of what I now considered my ‘buggered boob’ according to my consultant, they won’t carry out this surgery if it’s not absolutely necessary, and to them it wasn’t necessary. It has since been an ongoing issue for me, that a mastectomy may have been a better option and during this particular time, as crazy as it sounds, I struggled with the notion of whether not having one made my breast cancer case any less serious. I am all to aware how each patients case is individual and this was something I was constantly reminded of, so, with all guns blazing, I accepted this particular form of eradicating said lump and prepared for battle.
Once the last dregs of Christmas turkey had been recycled in countless different pies and the first grey clouds of January had set in, I was scheduled for my lumpectomy. This date had been hanging over me all festive period but it was the first round in my fight against BC. The day in question kicked off with a jolly little procedure called Sentinel Node Mapping. ‘In this alternative procedure, only the sentinel node (the first lymph node to which breast cancer is likely to spread) is removed rather than all the lymph nodes’. (National Cancer Institute) This involved being injected with a non-toxic radioactive blue dye, which would highlight the sentinel node, so my consultant knew the exact glands to remove. I had a series of injections into the breast after an ultra sound, then went home to rest for a few hours before returning to hospital for x rays where I must have resembled some kind of neon blue light saber that Obi-Wan Kenobi may have left lying around! They took images to prepare for the surgery, then it was all systems go.
‘I’ve got a lovely little blue smarty as a nipple now and my pee is neon blue slush puppy. It’s pretty dam sore and I’m feeling really restricted, but it’s out now.’
– Diary 4th January 2006
I remember the turmoil of feelings after the op vividly. I was confused what it all meant and I was desperate for a plan. I couldn’t bear the waiting, the not knowing. Three days later (I was beginning to wonder if I should set up a camp bed in the waiting room) and we were told they wanted to remove all my lymph glands so I was admitted back in for a second operation less than twelve hours after receiving the news.
‘When (my consultant) said things we’re not brilliant and two of the four glands taken out where cancerous, I barely flinched. Chemo is now pretty much 100% so I can finally start to look at the next six months more realistically. ‘
– Diary 12th January 2006
After the second op I was in hospital for three days and though distracted with visitors, it was a time of vulnerability and fear. It had spread more than they had anticipated, and the snowball of wondering how much of my body was under siege began to roll out of control at the rate of knots. The light we clung to was that it was estrogen receptive, something to be relieved about as it was an easier type of breast cancer to treat (apparently!) I would stay on tamoxifen and wouldn’t need the drug Herceptin, which at that time was not funded through the NHS and had been a big black cloud of the more financial type hanging over us. After more waiting, it transpired no more lymph glands were affected and we were finally taking baby steps.
Now, ever since those two operations, my boobs have been ‘little and lopsided’! Those two surgeries, though never actually removing a whole part of my female anatomy or recreating the assets of Pamela Anderson, still induced a definitive change in body image and to an extent, my femininity. At twenty six, with my life ahead of me, there was a definite attraction to having fake over faulty!
There was a lot of physio to get movement back, information overload about Lymphedema (or just a brilliant excuse not to have to carry the shopping!) and stitches galore, but my left breast was now scarred and would never be the same. I now had an obvious dent in an already tiny boob! I no longer had a matching pair. Naked, I felt like some kind of kids Barbie doll who had had one of her boobs attacked by the pet gerbil!
It is a long road familiarising myself with this permanent minor disfigurement, but yes, I fully appreciate, I still have my natural breasts, however redundant one may be. As blunt as it sounds though, I would prefer not to have them, but that is just me (I will explain my genetic situation in detail in a later blog) and after a second diagnosis six years later, you can guess why.
It’s not all about the image though, it’s about the risk and the practicality of surviving this cancer going forward and for me, though a lumpectomy has still had it’s trauma, the question of a mastectomy being an option for my future is unresolved. Despite the upheaval of the surgery and reconstruction, I still continue to wonder if it would reduce my risk of yet another diagnosis.
There will always be a multitude of questions regarding this topic for me, but we can ask the whys and ifs till we are blue in the face (or boob!) Lets face it, having breast cancer, or any type of cancer for that matter, is life changing whatever operations you endure or drugs you are given. For breast cancer, lumpectomy or mastectomy, your body is changed, your femininity and identity bruised. The battle for survival is paramount and living with the ‘after life’ and all of the side effects, breast or no breast, is tough. What I know for sure though, at the end of the day, is that no matter how much your outer shell is dented, it’s the spirit inside that can never be.