20. Preparation for Surgery Part II - The Decision No-one Could Make For Me
I arrived to my follow up appointment with the consultant armed with my little book of questions. Paschal was also with me. When I went in for my appointment there was an air of enthusiasm in the room, I would go so far as to say excitement.
The consultant started by telling me there was an option we hadn’t considered at the last meeting. This option was a lumpectomy, or breast conserving surgery as it was now called, with reconstruction, taking tissue from my right side and building my boob up with that. Due to the size of the area to be removed it was to be that or a mastectomy. My understanding was this could be done because the part of my boob to be removed was the upper right-hand quarter, so it would be a matter of moving tissue around from that upper right hand side of my body and building up my boob backup. Easy peasy! What’s to worry about?! He said there would be two of them [surgeons] present to carry out the surgery, and two’s better than one! This made me think it might be quite a new procedure in Altnagelvin Hospital. When I asked if it was a new procedure, I was told that it wasn’t, this is a procedure carried out and well researched. I knew I hadn’t asked the question right, but I would ask it again.
I was told there were a few things to check before it could be agreed that this procedure was a possibility. First, whether there was enough tissue/fat on my right side to move into my boob. The second surgeon who was to be involved came into the room and together they looked to see if there was enough to work with. Well, I was horrified and insulted when they told me there was enough fat there! Hehehe, only joking. I was delighted. It gave me an option.
Everything was talked in great detail and the consultant said in this circumstance the decision for a mastectomy vs lumpectomy was 50/50. So whether it was to be either/or was a decision that was being left with me. This was not what I wanted. I wanted to be told what to do, because I didn’t know. I was ok, or as ok as someone could be for it to be either/or. All I wanted was assurance that the cancer would be gone forever and the one thing that no-one could tell me was that it wouldn’t return. I was told I could take my time to make my decision. Although not too much time. A meeting was arranged for the following week. Everything just moves so fast!
I spoke with my breast care nurse after the meeting and she suggested that I speak with someone who had recently gone through breast conserving surgery with reconstruction from the side. That was a good idea. At that stage I needed to talk to as many people as I could.
This meeting took place a week after my fourth treatment. I was very tired and one of my concerns leaving home that morning was what could I possibly eat during the day. I could only stomach Dunnes own brand soup. so I hadn’t a clue what I was going to do.
After the appointment we were going to go for something to eat, but nice food or coffee wasn’t something I was capable of. Instead we treated ourselves to a carry out from Sainsburys. As we walked round all I could think was what could I possibly eat? We found some cooked chicken strips, that were a bit spicy. I thought I’d try them and I also knew I’d probably pay for it the next day. When we got back to the car I tucked into them and oh boy were they good. They were one of the best things I’d eaten in a while. So good, I went back in and got more and didn’t really care if I had to pay for it later!
I knew then there was no more burying my head in the sand, I was going to have to do the work to help me make my decision. I made an agreement with myself that I’d have my decision made by the next Thursday. It wasn’t really an agreement with myself, I was more or less told the decision had to be made by then so they could put it in there diary and get theatres booked. However, I told myself I had to set that goal, I suppose to make me think I had some control over the situation. The decision had to be made and the longer I took only meant more procrastination.
I contacted the Breast Cancer Now Someone Like Me service. This service is brilliant. People who have been through cancer volunteer to support those going through it. There must be a great number of people who volunteer as I was able to speak with women who had gone through each of the situations I was deciding about. Some who had a mastectomy and remained flat, some who had reconstruction, some who had a lumpectomy. I spoke with people I knew who experienced cancer. I scoured the internet and read account after account, I read research papers about which was more successful in regard to recurrence. It was all going around in my head. But the one question I had I couldn’t find the answer to. That was which procedure would guarantee the cancer would not return? But I couldn’t find a conclusive answer to that question anywhere, because it didn’t and doesn’t exist.
As I said before, I had read that the effects of chemo were cumulative and that is so true. I was wrecked after the last treatment. I didn’t even have the energy to walk Bella. Thankfully Paschal stepped in and took that on every day. I didn’t know whether the feeling of exhaustion was a result of the build up of the treatment or because chemo was coming to an end. During chemo I was in fight mode, I was positive, I was keeping strong in my head and, on reflection, I was probably running on adrenaline. Now at the end my body was battered. The timing wasn’t great as I had this hard decision to make, and I needed to inform myself properly. I wanted to feel in the end that I had done enough and that I hadn’t let myself down.
Throughout chemo the treatment was attacking my body, my immune system was low, leaving me vulnerable to infection. Getting an infection was a concern, firstly so I would be able to fight it and secondly, an infection could delay treatment. That was certainly something I didn’t want to happen, no siree, I had planned 18 weeks of this and that was that. I was strict with myself. I ate as well as I could, I went to bed early (I didn’t really have a choice in this), avoided going out in the rain for fear of getting a cold. It wasn’t too hard as I’m quite happy pottering about on my own and after COVID isolation was something I was well used to!
Last day of chemo!
All of this paid off as I didn’t get any infection during my treatment. However about two weeks after chemo finished, I was sitting in the house in my oddie during the day. I was reading about surgery options, but I was freezing. I lay on the bed and thought ‘I can’t get warm’. In that moment I knew it. I had an infection.
Around the time of my diagnosis Sarah Beeny had done a documentary about her cancer journey. There was a part where she got an infection and had to be admitted to hospital. I remember watching it thinking the time, I hope that doesn’t happen to me. And now here I was.
I had Sarah Beeny’s experience in my subconscious from the beginning. As I lay on the bed I thought ‘this is it’, the moment I’d been dreading. Throughout treatment it was in my head that if I got an infection I’d nip it in the bud as soon as I felt it coming on. Getting it treated early reduces the risk of a hospital admission. I phoned the helpline and I was told to go straight to A&E.
I phoned Paschal to let him know. He said to wait and he’d bring me, but after seeing what happened to Sarah Beeny I hoped I’d be ok to drive, although I wasn’t entirely sure. I decided to go on and anyway he could stay with Bella. I got changed and left, with little Bella lying in the sitting room, not knowing what was going on, but knowing I was going to leave her.
On my way to the hospital I realised, in the rush out the door, I forgot my phone. Of all times to forget it. I didn’t have time to go back as I was told to go there immediately!
When I arrived at A&E, it was packed. I checked in and sat in an area for priority patients. The receptionist asked me to move to the general area but I explained I had been referred from oncology and needed to sit away from others due to my low immune system and the fact I likely had an infection. Eventually she let me stay where I was.
While I was waiting, I tried to contact a couple of people to see if someone could bring my phone to me but couldn’t get through. I decided I’d just have to work it out.
When I was called in, the usual checks were done and I was brought to a room to wait, and wait. As I waited I realised I could’ve gone home to get my phone, I had plenty of time, but fear and urgency had taken over. I just hoped I didn’t have to be admitted. Bloods were taken, again!
Eventually a doctor came in an explained what was happening. I asked if he could look Paschal’s business page on facebook to get his number. The doctor was helpful and after getting Paschal’s number allowed me to use their phone.
Paschal had already realised I’d forgotten my phone and offered to bring it to me! We had a Tesco delivery due, life goes on. So I told him he could stay with Bella and get the delivery. There was nothing he could do at the hospital anyway.
I sat and waited some more, freezing. I was given an IV antibiotic and IV paracetamol. I had a urine test that confirmed I had an infection. A few hours later I was sent home with an antibiotic to taken over the next seven days. Panic averted. The infection was caught in time. No hospital stay needed. What a relief. Thank you Sarah Beeny, if it wasn’t for your documentary I might not have reacted as quickly.
I got home, Paschal was there, Bella was there and the Tesco delivery had arrived. All was ok in our wee world for then. We were due back in Altnagelvin in a couple of days when I would have to give my decision. Paschal said he thought I’d made my mind up. I told him I had but I’d since changed it and I could change it 100 times more before we next met the surgeon. My head was a mess!
