The last few weeks have been a huge period of introspection. Nobody can imagine, when they are diagnosed with breast cancer, how they will cope but you hope you will find strength to deal with your new unravelling journey. As I reflect on what has happened over the last 12 months I think, whilst there are many dark days, you either venture into the trough of despond or you try to find the positive in each and every situation and cling onto hope, even when your fingernails are gripping on for dear life and you feel you may slip off the cliff edge at any moment; for me clinging onto hope is always the best option, for without hope, we have nothing at all.
In some ways the hysterectomy has gone quite well and in others, I seem to have developed a myriad of other problems which I had not anticipated, some small, some much more troublesome. I was advised the stitches would take two weeks to come out and eight weeks later they finally dissolved, I deduced from this I clearly had rhino skin. My husband kept saying, “just pull them out” but even the slightest tug felt like it was pulling internal organs through my epidermis, alien style. The incision site near my bellybutton became somewhat infected and still remains sore. It is of course human nature to fiddle with something that has been sore for a period of time and so naturally I keep prodding it to see if it is feeling any better, it isn’t. In a similar vein, since I had my reconstruction surgery, I have little to no feeling from my bellybutton down to my bikini line. This means when I place my hand on my belly I don’t know where my bellybutton is so I like to play a game a little bit like ‘pin the tail on the donkey’, except it’s called try and find your bellybutton. Because I have absolutely no sensation of course I always miss and my finger points somewhere to the left, right or upper middle of my navel which I still find amusing!
On a more serious note, since the hysterectomy, I have joint pain which is quite debilitating. I am currently working with a physiotherapist to try and strengthen some muscle groups and in the meantime, waiting for a CT scan. My bladder has become hyper-sensitive – no one told me about this and I certainly didn’t sign up for it!! As a young woman I am definitely not ready for Tena Lady so instead, I am totally committed to Kegel exercises but if I do them with anymore regularity soon I will be able to hold a pencil up my chufty but in the meantime, they are not helping the bladder issue whatsoever!
My thoracic spine has become quite flattened since the mastectomy in spite of yoga so I am working hard to try and improve the range of movement in the area which will hopefully increase flexibility to my right arm.
When I embark on any exercise, I realise half way through, I have limited stretch in my abdomen. I don’t know whether this is because of the hysterectomy or whether it is due to the DIEP reconstruction. It feels as though my skin is so taught it is going to tear open. It doesn’t stop me but it is a constant reminder and I feel I need to be careful. Put it this way, Vinyasa classes are out of the question for now. I have absolutely no idea whether I will gain any flexibility in my skin; if it will stretch in due course or if it will always feel taught. My bionic boob is extremely sensitive and some days even my clothing touching it is enough to cause pain and discomfort. If I find myself in a situation where I need to run (which I try hard to avoid), it feels as though my boob is going to detach like a tennis ball being catapulted at 160mph by Venus Williams’s serve only then to forcefully land back onto my body with an almighty jolt as the force of gravity makes me take two steps backwards.
On a day-to-day basis I feel as though I have been shot with a tranquilliser dart big enough to stun a horse. Fatigue is simply an understatement and on some days by 10am my body is drained as I walk around zombified. I refuse to go to sleep early in the day, clinging on for as long as possible and usually find myself catching a ‘nana nap’ just before the kids come home or before supper hoping no one has noticed.
The fatigue is generally not helped by the sleep deprivation during the night and the constant tossing and turning of the duvet, will I be hot or will I be cold – who knows! I have learned to surrender to it rather than fight it. I think if you resist the sleep it becomes stressful and a self fulfilling prophecy. I have learnt over my weeks of increasing insomnia to surrender to the feelings and instead of willing myself to sleep, accepting rest will suffice in-between the long periods of awakeness. When my mind starts to wander as it does sometimes, I meditate to bring it back and give me a fighting chance of peacefulness. Of course sometimes it has a mind of it’s own and is totally uncontrollable and on those occasions I fall out of favour with it and give it a serious talking to. Everything you read suggests you should come downstairs and put the kettle on but I fear I’d never get back up the stairs because I know I’d find something to do on the ‘lets tidy up’ front.
Since the hysterectomy, I have become incredibly emotional. I can be having a perfectly normal conversation about a typical part of my day and for no apparent reason burst into tears. This is so unlike me. I have needed lots of hugs which is untypical and there has been an immediacy to needing support with my emotions. My husband has been truly amazing and I would have been lost without him. When I was contemplating the surgery I had not considered the emotional implications I would experience. In many ways I feel like the teenager who has started her periods – full of heightened emotion and struggling to express them.
It has now been 12 months since my initial diagnosis and over the last few weeks I have spent much time thinking about what has happened over this period. I don’t know whether it has been my heightened emotional state or perhaps time to finally reflect on life’s events, but I have found it difficult to come to terms with everything that has happened from the diagnosis; the surgery being cancelled; the further delay to the surgery; dad being so poorly; the unexpected breast cancer diagnosis (as I was initially diagnosed with DCIS); radiotherapy; commuting to 2 hospitals in two cities; my husband changing job; the impact the whole situation had on our family; the guilt you feel and helplessness when you are in this situation and then of course a hysterectomy. I haven’t been wallowing in self pity but more coming to terms with the enormity of what has happened for the first time. I think I have been running on auto pilot and now, my body and mind are adjusting to their new normal, mentally and physically.
I was delighted when I received a letter to say my mammogram was normal though I twitched a little as there is no testing of the bionic boob – (it isn’t breast tissue so traditional breast screening will not suffice). I really do need to, ‘let it go’ as with every new lump and bump which arises, and there are many, I wonder, ‘what if’. I am coming to terms with uncertainty. I know it will pass as hopefully, there will be more time between the diagnosis and today and I will get used to emerging lumps and bumps in a reconstructed bionic boob which has been zapped with radiation. At an appointment with the plastic surgeon the last week, she actually said ‘it’s so taught and so full, it looks like you have an implant’ and it does – it’s like a cantaloupe melon, shame its sister is more like an over ripe avocado…
When I saw the plastic surgeon she was clearly very pleased with her work admiring me like an exhibition at the Getty Museum, as I stood there, one nipple on, one nipple off. I had gone open-minded – wondering whether more surgery was really what I wanted or needed right now – and yet as soon as she opened her mouth and started talking about how much better the overall look would be once she had finished sculpting, taking a little bit of fat from here there and everywhere to fat fill my left boob and shave a little off the bionic boob to minimise its overall plumpness – I was sold. Her defining line, “having a breast with no nipple it’s like having a face with no nose “. I’m not quite sure I agree to that extent but I could see where she was coming from and given my dressing table is covered with glue from the prosthetic nipple I attach on a daily basis not to mention the odd bit of cotton wool that gets stuck to both dressing table, fingers and nipple as I am doing my make up, it will be a blessing to have a more permanent solution.
A couple of weeks ago I was getting ready, I had put glue on my nipple and left it to dry for the required five minutes before applying it to my skin only to forget about it and discover it attached to my ponytail! Can you imagine going to Tesco with a nipple in your hair – OMG! As the plastic surgeon was summing up, I was increasingly buoyed up at the prospect of nipple reconstruction surgery having gone in fairly disengaged only then to be told right at the end there is a likely two year waiting list. I got in the car, phoned my husband and cried all the way home at the prospect of this chapter not ending for another two years.
In Kundalini yoga, Yogi Bhajan says “keep up and you will be kept up”, this mantra can be applied in many ways, to remind us that the road to mastery takes perseverance; to encourage us to commit to yoga which in turn helps us to see through life’s challenges. The message I take from it now… it’s about the thoughts we think and the energy those thoughts help to create, good or bad, positive or negative. We have a choice. It is easy to become all consumed by negative emotions, ill health, fear and uncertainty but it we keep up and try to reorientate those thoughts, find the time to be grateful, seek compassion in all we do, we will be kept up.
Thank you for taking the time to drop by…
Much love, Toots xx