So, that was it, I was now on the cancer treadmill. I was told by the Breast Care Nurse that due to my age they would ‘throw everything at me’. I talked to my sister in law as she worked with an ex breast care nurse and I started looking at options for reconstructions. Two days later I met a friend of hers in a pub near a local Football Stadium and we sidled off into the ladies where she lifted her top up showing her reconstructed boob – ‘THAT’ is what I want…. It was an amazing reconstruction, symmetrical and very natural looking. She had a Latimus Dorsi reconstruction; she explained it to me as being a boiled egg with the nipple cut off like the top of an egg, the middle scooped out and the muscle from your back fed through under your arm into the cavity in the chest wall. I decided it was what I wanted to have done. I researched other options but felt this surgery was right for me.
Armed with this info I waited to see my Breast Care Nurse who was coming to see me was coming to show me pictures and discuss issues like chemo. I had lots of question… I had found that the surgery that I opted for was also done at another nearby hospital within the same Trust and I had a recommendation of a surgeon at the hospital as well. On the day the Breast Care Nurse turned up, my mum, sister and auntie came up before she came to take my two children out to the park so that we could have an easier conversation. The Breast Care Nurse had the same surname as my maiden name… All I could think was this was a good omen. I greeted her at the door and she came in and sat down (with another person with her) so she introduced herself ‘hi’ we all said and this girl was just stood with her. ‘Who is she?’ I asked. ‘Oh she’s a trainee, you don’t mind if she listens in do you?’ Well actually yes I bloody well do but politely of course I said ‘no, that’s fine’. Not off to the greatest of starts but hey ho, all will be good. 10 minutes into discussions we got into discussion about surgery and she mentioned reconstruction and I asked her for pictures. ‘These are all I have’ she said and produced 2 pictures of what to me looked like uncaring mastectomies with the boob simply take off and a big scar across the chest. ‘Is that all you have? No reconstruction pictures?’ I asked. ‘Yes, that’s it, we don’t have any more pictures’. I was quite taken aback at this response and said ‘well that’s not what I want’ ‘oh right, so what is it that you do want?’ She said huffily. I began to explain that I’d see this lady and the egg explanation and how wonderful the reconstruction was and that I felt it more suitable to me, my circumstance and my age.. ‘Well’ she said and closed her note book and file together with a snap ‘there’s no point in discussing this any further’. Now, if I would have been actually sat on a chair I would have possibly fell off it at that point but thankfully I was sat on the floor. ‘Pardon?’ I said. ‘Well there’s no point in discussing it any further as you’ve obviously made your mind up to go elsewhere’ OMG I didn’t know that she was doing a sales pitch and perhaps she wouldn’t meet her target or get a bonus??? I piped up ‘so what about chemotherapy?’ ‘No point in discussing anything else with you’. As blunt as that. It was a shock to hear but the best was yet to come. So there’s she was gathering her stuff ready to leave and she mentioned the consultant ‘if Mr M was able to do that surgery, would you have it done with him?’ I wanted to lie but the honest answer came out ‘no absolutely not, not now…’ And that was the parting shot. Well goodbye, thanks for coming and being so damn ‘caring’ – that was my first experience of a Breast Care Nurse! So much for good omens… Shocked I was straight onto my GP and had an immediate meeting with her and explained what had just happened and how appalled I was at the uncaring nature of the BCN. No one should be treated like that. So that was the start of ‘standing up for myself’ and I could tell that there were possibly going to be times when I needed to say ‘no’ or question professional abilities as they are not always right or don’t always think about the patients perspective. My consultant seemed very detached from a young women’s needs in reconstruction. If you want a second opinion, you are entitled to ask for one. You have a choice and whether it’s the choice of surgeon, hospital or even whether it’s too costly for parking at that specific hospital and you would like to go elsewhere – then that is entirely up to you. Patients need to understand that you have a CHOICE and if you’re not happy with anything regarding the choice you have offered then ask for a referral, it’s YOUR choice.
A week later I discussed my surgery with the surgeon of choice at the hospital of choice. My consultant gave me all the reassurances that I needed to know. I was booked for surgery on 20th March after deciding to take the Northern ‘belt and braces’ attitude (in other words take it all away). At the time of these crucial decisions, none of the professionals would or could advise me what to do. I was told it had to be my own choice, I guessed (rightly or wrongly) that the reason for that was if it was the wrong decision that they had advised me to have, I could sue them. Therefore it had to be my ‘own’ choice. Well I don’t know if that was true but it sort of makes sense if no one is giving you answers. It’s a hard decision to come to terms with. The thing is that until they perform surgery they can’t tell you what grade or how far the cancer has spread… It’s a chicken & egg decision. My reasoning was that if I had the whole breast tissue removed then there was more chance of the surrounding cancer if it had spread that would be taken away. I didn’t want to chance the ‘margins’ and leaving anything behind. This is where the question about lumpectomy vs mastectomy comes into play (I have discussed my feelings on this in another blog I’ve written about the ‘Jolie Effect’) and all the recent reports on how younger women are choosing to have double mastectomies. I know if I would have had the BRCA gene there would have been no doubt that I would have done the same as Angelina. Who wouldn’t go for preventative surgery? That would be a no brainer for me. Of course not everyone has the same opinion.
Well that was it, it was going to be a long surgery and recovery and even though they tell you about it, you don’t really have any idea what is going to happen… it’s a bit like having a first child. You know it’s going to hurt like hell but until you really experience it then you have no idea. I didn’t want to put my husband under the stress of looking after 2 children alone whilst I recovered but I had to think about me and I was thinking long term and the effects on my body image and how I could make it the best of the worst situation of my life…
Going of track a little but you will understand why in a minute… There is a film that resonates with me & my feelings & makes me cry when I watch and listen to this scene.. Its 127 hours where the climber has to cut off his own arm to save himself. One of the last scenes where Aron says the below which seems to describe me & breast cancer…
“You know, I’ve been thinking. Everything is… just comes together. It’s me. I chose this. I chose all of this. This rock… this rock has been waiting for me my entire life. In its entire life, ever since it was a bit of meteorite a million, billion years ago up there In space. It’s been waiting, to come here. Right, right here. I’ve been moving towards it my entire life. The minute I was born, every breath I’ve taken, every action has been leading me to this crack on the earth’s surface…”
Aron had to cut his arm off to survive; I had to have my breast cut off to survive… Ever since I was young, I always felt different, I can’t quite put my finger on why but perhaps it was because I knew something about my body that others didn’t. Who knows? I guess what I’m saying is breast cancer was ‘my rock’…
Remember ladies AND men that October is Breast Cancer Awareness Month – please check your breasts!
