9th September 2009
I was nervous as hell and I had to take my youngest daughter with me to the hospital. She was a distraction to say the least. When we went in the room the tension could have been cut with a knife. The fact I had brought my daughter added to the tension in the room, but I have a life as a mother what did the consultant expect. I have never dumped my children with strangers. The friends I have in London I have not known long enough to contemplate on asking. I have always relied on my family and they are up north. Not that I would even attempt on turning to them now. My eldest daughter is working and trying to save up money for her university degree.
The consultant explained it is pre-cancerous, but high grade and it affects a large portion of my breast tissue so I will have to have a mastectomy. So my nipple everything will be gone, but here’s the bonus. I could have reconstruction done same day if I wanted because I’m thirty nine years old. All the procedure will take place at the Big C hospital if I have reconstruction as well. Or I could have surgery done at this hospital to remove the breast and reconstruction on a later date.
I am a type 2 diabetic so this was my ideal excuse to want all done at the same time at the hospital of my choice which is the Big C hospital.
She tried to convince me that it would be done a lot quicker if done separate, but I stood my ground after all what difference would a few days make. Plus I had read posts on the various BC sites about reconstruction and how they had to wait. Then the consultant said she would like to do the sentinel lymph node biopsy at this hospital so| the results come through quicker.
They do this to check that there is no invasive cancer within the breast that could have spread.
There is a new technique being used where they inject a dye into your nipple that follows the ducts to the lymph nodes in your arm pits and remove one or two. This is better than having all the lymph nodes removed and less chance of lymphedema occurring. Lymphedema is localised fluid retention in your limbs. It is one of the effects of having all your lymph nodes being removed. This new procedure is welcomed by breast cancer suffers because it drastically reduces lymphedema occurring.
The results from the lymph node removal would come back in a few days and will decide my treatment. I will also have the receptor test done as well. This tells you if the cancer is relying on any hormones and dictates whether I need any drugs like tamoxifen. (Anti-oestrogen drug.)
I’m being pushed to get the operation booked now, but I’m not going to decide straight away. The consultant was not pleased with my decision time is money after all, but I had doubts that will not go away about the hospital.
How can I trust the hospital when they had already caused me distress with the procedure that got the results? I am frightened who wouldn’t be?
The breast care nurse took me to a private room and that’s when it hits me. I started to cry my little heart out. I sat there thinking please just go, leave me alone. I hate it when strangers see me cry. I feel vulnerable and weak. My youngest daughter cuddles up to me because she can see I am distressed. It was like she was trying to distract me to calm me down.
“The nipple has to go?” I ask.
“Yes.” said the breast care nurse.
The silence of the room I find intimidating and I knew she wanted a reply. The pressure that was being placed on me was unbearable. Then I spilled out the reasons of not wanting the operation done at this hospital. Hoping for some sort of reassurance it will not be repeated.
“I’m sorry about your experience, but we do not have control over staff.”
This woman is supposed to be here to support women and she more or less was happy to let what I went through pass by. I could not believe what this woman was telling me or her explanation.
Did she think I had made is up and blown it out of proportion? I know I have a good imagination, but this is my life. It is like being a person looking on rather than the person being treated.
How can I put trust in these people to do the job right?
I left the room deflated and angry, but I knew I had little choice in the sentinel lymph node biopsy being done at this hospital.
I rang my husband for some sort of support he just said go ahead have it done. Well it isn’t his testicles on a slab being taken away. Steve can be so cold and direct with his answers. When I tried to talk about what ifs he said “I don’t want to discuss it. It has not happened wait for the consultant to tell you and stop second guessing.” He shut me down from talking about my situation.
He said “Stop being negative you has no results yet.”
Yes it has not happened yet because it is not happening to you. The slightest sprain or bruising the man is howling the place down. This operation could be a solution or the beginning of an even longer journey. This I would sooner not face, but what choice do I really have with or without his reassurance.
I start to question what our marriage is made of. Does he care? His wife is having her breast removed and he is acting like it’s a walk in the park. I feel I’m being punished by him and I’m infuriated at his lack of compassion.
I see the breast care nurse and tell her to book the operation in. She strokes my arm and says, “It’s better to get this bit out of the way as soon as possible. Then we will have clear answers to your treatment. Please don’t worry Sarah.”
Don’t worry the women says, she has just said they have no control over staff. Why would I suffer sleepless nights?
Everyone was waiting by their phones. When I told one friend she was so upset she reacted by putting the phone down. I thought what have I done maybe I should not have told her. She left a message on my answer phone later to say how sorry she was and to call her anytime. Even that her behaviour on the phone was out of line, but how are you suppose to act? She had tried to remain positive for me and admired my determination to stay up beat. She thought like others it would turn out to be nothing. The shock of my diagnoses has left her not knowing how to respond or what to say.
I think about my husband and his responses and how he is behaving. The only time he shows any comfort is when I’m fast asleep, but really I’m awake when he strokes my arm. I just wish he would hold me tight and say it will be fine. He does, but I seem to prompt it by going close to him.
I ring my friend Sandra up she says “Hey chuck don’t worry it’s a breast it can be replaced.” I explain to her it is not my breast, but the fact I will have lost my nipple. She understood what I was saying, but was my life worth more than my nipple?
When someone puts it plain and direct in front of you it leaves little room to react.
I have two daughters to think about and their needs more important than my nipple. My reasoning is self centred and the breast has to go so the decision is out of my hands. We spoke for a good thirty minutes chatting about the pros and cons. She said “Sarah I just bloody well found you. So don’t you think your ducking out on me again?”
Sandra and I had not spoken to each other in seventeen years. We were the two some, gruesome of Scarborough. I lost contact with her when I moved addresses. We had found each other again through FB. Her eldest daughter Leanne was on there and she was the spitting image of her mum.
I sent her a message asking if she was Sandra’s’ daughter?She replied within hours of me asking and I sent my details to her requesting she forward them onto her mum. Ten minutes later Sandra rings me up screaming “You old cow where you been? Why haven’t you kept in touch?”
That was in March 2009 Leanne invited me to her wedding in August and me Sandra and a few of the girls from our younger years met up. We chatted about the mischief we caused in Scarborough.
“What are you doing now?” asked the girls. “Are you married? Did you have any more kids?” It was like me and Sandra had not been apart.
But not once did I mention I had a problem with my breast. I kept that bit quiet because I did not want to worry anyone and spoil the reunion.
This disease I should not have? I’m in the two percent bracket. That’s the percentage for winning the lottery.
When I broke the news to my mum she sobbed down the phone.
“Sarah you should not have this.” She said.
But who else should get it and why? There is no magic wand to solve my problem just a surgeon’s knife.
Sandra & Sophia, bridesmaid at Leannes wedding