Mastectomy (surgery) and recovery

The MDM was Thursday 5th October and I didn’t receive a phone call. I phoned the Cancer Care Line the next day asking to speak with Wendy so that I could have the outcome. I was at chemo. She phoned me to tell me – I could have the right breast removed but not the left. I needed to have a psychology assessment for that. I got very upset with her and swore – I was sitting in a chemo chair! I spent the next three hours crying whilst receiving my chemo. Bless those nurses, they were amazing. To be honest, I don’t really know why I was so upset – none of what Wendy said was a surprise and was actually a very good outcome.

Anyhow, I finally got my head around what was happening and spoke with Mr C on Friday 13th October. This was primarily about the psychology assessment. He explained that he would refer me to Guy’s and that I should ring them after a few days.

I did ring Guy’s – I was not going to be assessed by them! Panic ensued! I spent a lot of time speaking with Connor, Mr C’s secretary, about options. There weren’t any! I did not have access to a psychologist within The Trust. At this point I decided to source my own and started to look on the internet. I came across a website for Dr H – she is a clinical psychologist who works in a hospital in London and also carries out private assessments specialising in cancer and body changes. Basically, I needed to find out whether her letter would be accepted by my team and if it would be, I was going to pay for it myself as it wasn’t an horrendous price (Mr C actually wanted to know how much).

At the beginning of November, I found a lump in my armpit. I was pretty sure it was from the seroma I’d had in March, as was Nessy, but as a precaution, she referred me to Mr C’s clinic. I would get a two-week appointment!

In the meantime, I had my clinical psychology assessment on Friday 10th November with Dr H. This lasted 55 minutes and I was asked lots of questions. I felt that the questions were heavily biased towards body image which I really didn’t like and as this wasn’t my main motivator, I actually felt quite offended. However, I got to the end of it and she understood where I was coming from. It might not have been the right place to have been coming from but I wasn’t about to change my narrative – I had said all along that they needed to go because I wasn’t able to check myself. In my eyes, it wasn’t quite risk reducing but in a sense, it was. I had joined a group called Flat Friends UK and found out about symmetry surgery – I couldn’t change my narrative to this and needed to continue with my true feelings. I did, at one point when speaking with Mr C, say to him that if it was not agreed that I could have a bi-lateral mastectomy, I would be requesting a ‘contralateral symmetrising mastectomy’ as I had every intention of being flat. Dr H shared her letter with me early the next week and once I was happy, it was sent to Mr C’s secretary to be shared at that week’s MDM.

My letter was shared with the MDM and it was agreed – I could have a bi-lateral mastectomy and this was going to happen on Monday 4th December 2023. Hurrah!

The 4th December came around very quickly. I arrived at The W H Hospital at lunchtime and was told that I was Mr C’s only patient. I was made ready and saw all the people who would be supporting me through the operation. I spoke at length with the anaesthetist about how I was so unwell back in March. He said that he would ask if something else could be used to try to combat that this time. I eventually went down to theatre and my hands decided to get very cold – again! The anaesthetist had a trick up his sleeve to bring up my veins. He filled a blue surgical glove with warm water and asked me to hold it on my hand. This worked well. I then needed to breathe something in until I felt ‘funny’. This seemed to take a very long time but eventually it happened and I remembered him saying that he was going to start putting the drug into me. This was TIVA – total intravenous anaesthesia using something called propofol (the anaesthetist told me it was what Micheal Jackson enjoyed).

I woke up four hours later feeling absolutely fine. I was wheeled around a couple of different places before being put back on the day ward. I was out of my bed before I got there as I needed to go to the toilet. I also ate lots of sandwiches. I had no ill-effects thankfully. Once on the ward, I was up and about, walking the corridors. I made lots of phone calls letting people know that I was ok. Many of these people were relieved to hear my voice. We did have some issues with one of my cats during the night and my partner had to rush her to the emergency vet as we thought we’d have to put her to sleep. Thankfully, this wasn’t the case but was still very stressful. I spent the Tuesday and half of the Wednesday in hospital. Mr C came to see me a few times. I was allowed home on Wednesday, just after lunch. Nessy had agreed to take out my drains on Friday and so the day ward team were happy to release me.

I was exceptionally pleased that both my breasts had gone. I didn’t like the drains. They were in the way at all times and made life quite limiting. Having little bags helped as I could have my hands free. Once home, I did a little work but took it very easy. Sadly, on Thursday 7th December, my friend who had secondary triple negative breast cancer died. I actually handled this much better than I thought I would. I think, rather selfishly, I had detached myself so much, I could think and talk about it.

On Friday, I saw Nessy and Jane, a new Breast Care Nurse. Nessy removed the drains. That was a horrible feeling. The only way I could describe it was like worms being pulled out from my insides. Andy was waiting for me in the large waiting room – it was during this time that it would seem he contracted COVID. When I came out of the room, he told me that a woman had sat next to him, coughing a lot.

I saw Nessy again on Thursday 14th December and by this time, Andy was testing positive for COVID. She removed my dressings and explained that all was looking good. She said that she’d see me again on Monday. By Monday, I was testing positive for COVID. I was a little scared about this as obviously I’d not long stopped having chemo and I was only twelve days post-surgery. I was offered the anti-viral drugs but I turned them down. Thankfully, all I had was a runny nose and was left with sinusitis. I did test positive for 9 days, only being clear on Christmas Day.

It was clear that I’d developed a couple of seromas but they were not drained. I was seen on Monday and Friday of that week as we were building up to Christmas. Nessy contacted me after Christmas but didn’t seem overly concerned about them from what I was saying.

The after-effects of surgery are not too painful. I feel that I have been lucky. The seroma I developed remained for quite some time but didn’t really cause any discomfort. I do have a ‘dog-ear’ on my left side. It’s quite ugly but very small. I don’t like it at all and I will be looking to have that tidied up at some point. The other side continues to be numb in my armpit. There are days when it is very painful but generally, I can forget about it.

There have been times when it has been extremely uncomfortable laying in bed. On one occasion, I woke up in the middle of the night in excruciating pain. I was laying on my left side and must have been pressing on the area around the ‘dog-ear’. However, it would seem that the drain site was where the pain was emanating from. As soon as I moved, it did go away but this area has been sore to touch since the operation day.

The scars appear to be healing well. I put lots of cream on them twice a day. I also try to massage them. I really don’t mind touching them – I knew this would be the case when I kept saying that I wanted a bi-lateral mastectomy. I do feel that I can look at and feel the area so that I can check for any local recurrence. Since having the operation, I do feel a little more like the old Julie. I don’t think I will ever be her again but I might get to be something close. I generally feel happier but I do always think about cancer. People assure me that this is normal and will ease in the longer term. I do hope so as I am sometimes kept awake at night by my thoughts. I also continue to wake up frequently every night and the first thought that pops into my head is ‘cancer’. However, my rational brain is able to make these thoughts go away and they don’t seem to be consuming me. I think this is the best I can hope for, for now.

I also have lots of different ‘foobs’. I quite like wearing softies and have three different sizes. These fit into the pockets of post-surgery bras. I have found some really nice bras in Marks and Spencer. A few weeks after surgery, Nessy fitted me with some silicone prosthesis. They are Thuasne Silima, size 9b. Initially, I thought they were too small – I was so used to having my 32GG boobs that having something which was around a DD cup size felt really tiny. It didn’t take too long to get used to them and I feel that they are the most comfortable things to wear. I also bought myself some Boost (picture to the right) but I find these quite irritating to wear. For some reason, the silicone makes my skin itch and I can’t make it sit in the pocket; there is always some on show and touching my skin. I know a lot of women really dislike their NHS prosthesis but I actually love them.

Going flat is something I generally don’t do if I’m going out. This isn’t for anyone other than me because I don’t like the way my clothes hang. I look down and I see a ‘Winnie-the-Pooh’ belly. I do laugh as I don’t actually care but I have some really lovely tops that need to have shape (or I think they do). As I said earlier, I have joined the Flat Friends UK group on Facebook and from this, become part of a Kent Flat Friends What’s App group. These groups have been a great support.

It is strange seeing my body as it is now but I look at my scars and they make me smile. Although they are not perfect, I think they are beautiful. I really don’t care what anyone else thinks, I know for definite that I made the right decision to fight for what I have now.

Now that treatment has ended, I look back at what I went through and it doesn’t always seem real. That was 10 months of the biggest challenge I have ever faced. I’m grateful that I felt well throughout. However, now I’m three or four months along from finishing, I’m left with various things. Chemo has left me with a weak bladder, neuropathy (which is improving slowly), suspected carpal tunnel, my back hurting (pre-existing condition) and chemo fog! Oh my goodness – the chemo fog. I could be in the middle of a sentence, think about something else, and completely forget what I was saying or doing. It’s hilarious when I’ve been delivering training. To be honest, all I do is laugh at myself – this sort of difficulty is something I look at in children and now I know how they feel. I do know that most of these things will get better in time – for me, that time isn’t going fast enough and I frequently forget that I only finished treatment 3 or 4 months ago.