Progress – Week 6 & 7

I delayed writing this week because of my oncology appointment, which took place on Wednesday. My assumption was that I could detail the treatment plan here. Unfortunately not (see below). But there has been plenty of progress. 

Physical recovery

Over the past two weeks my recovery really has gathered pace. The wound has now completely healed and the swelling is reducing. For the past almost 7 weeks, I have been walking around with what felt like a cushion under my arm. It would swell during the day and reduce a little over night. Now though that has improved a lot. The past 2 weeks though, I have been getting shooting pains at the top of my arm, just above the armpit. My oncologist reassured me that the reduction in swelling is causing this. The nerves which had been compressed are jumping to life, and this is exactly what it feels like. 

Oncology appointment 

As I mentioned above, the oncology appointment was on Wednesday. After surgery a small sample of the tumour should have been sent to USA for analysis. This test predicts the likelihood of recurrence. For some reason, it was omitted, so no result and therefore no treatment yet. If the likelihood of recurrence is high I will need chemotherapy and this must be done before radiotherapy. This is very irritating as I want to get things done and over with. The doctor wasn’t best pleased either because it delays things. Plus he spent 20 minutes chasing results that didn’t exist.

The up side is that I get to enjoy Christmas with no worry about treatment. But it does prolong the uncertainty. I can’t control it, so I don’t plan to worry (too much).

Body image

Since the operation I have been wearing a soft cushion thing in my bra. They call this a stuffy. It gives some shape, but rides up and definitely isn’t the same size as my remaining boob. 

Yesterday I went to be fitted for a silicone prosthesis. It is larger, a better shape and is the same size as my left boob. It weighs a pound (yes, it has been on my kitchen scales), but you don’t notice it once it is in the bra. 

For this procedure I had my bra size measured. It may come as no surprise to find that I have been wearing the wrong size bra, probably for 20 years or more. So, rather than a 36D apparently I am a 42C!!!! Funny thing is, a 42 bra doesn’t seem much looser than a 36. The world of bra measuring seems weird and further investigation is needed. Plus hopefully weight loss!

Over all, I am feeling better about myself. I am used to the way I look and feel. I don’t exactly love the look of myself but it is who I am for now. For that reason, I will be sharing photos soon. I just need them to look as good as they can and the lovely Molly has offered to help me with that. There is no one I would rather have to photograph the new me. 

A week on

Tomorrow it will be a week since my surgery. It has been a strange time. A period where I and we have had less control over events and our lives than we like. I know in the future we will look back on this time and recognise it was just a week. But right now, it has felt a lifetime.

I wrote about the day of the operation and my immediate thoughts here. Remarkably I was less than 24 hours post surgery. I was still under the influence of the anaesthetic and a strong pain killer taken over night. The disappointment of not being allowed home that day had subsided. I knew I wasn’t ready. But I did feel very well and positive. Sadly my positivity didn’t last that night.

In the afternoon I had a visit from the lovely Indie, who took time out of her sightseeing schedule to spend time with me. she brought chocolates and a friendly ear. We chatted and laughed as well as discussing some of the more serious aspects of this whole episode. 

Later that evening I developed haematoma. The operation had taken place in a hospital with no emergency facilities, and although there was an on call doctor, he wasn’t part of a surgical team. Around 11pm at night, he and I imagine the more senior doctors he sought advice from, decided I should move to another hospital. It is only a few miles away, but involved an ambulance, time in an assessment unit and then transfer to a ward. Suddenly I felt alone, scared and completely out of control. My bubble completely burst and over a period of a few hours I felt quite desperate. 

Looking back

I can see I was unrealistic about the size of this operation and the potential complications. It is also clear that those explaining things were pretty blasé about the risks. The chance of me ending up with a wound drain was high, yet I was told it was something I might have. 20% of women end up with a haematoma after mastectomy, and that is a reasonable risk. But I hadn’t really looked into it at all. We were told that it would likely be an overnight stay, but from where I sit now, I can see that was unlikely. 

I wonder why it is clinical staff are so keen to shed a positive light on recovery times. The fact that I went into this with such a rosy view has meant that what happened after was quite a shock to the system.

Getting out of hospital was quite a challenge on Thursday. My surgeon is based at the original hospital and seems to have a pretty heavy workload. So another doctor saw me on Wednesday and Thursday. He would have preferred me to remain in hospital but I had had enough. Because I still have the wound drain home services were set up for me. But I really didn’t want them. My long nursing career means I know how to manage a drain and understand what to look out for. Sitting around waiting for someone to measure the output is not something I want to do. I don’t think I was being difficult when I asked for Saturday off from visits. But it is not something they seem all that used to. 

Practical stuff

I have ordered a bag so I can carry the drain around. It arrived yesterday, but unfortunately I was out and the postman has taken it to the sorting office. Meantime I have a shoulder bag that is the right size and shape. I am getting quite good at hiding the tubing. And as with other things, people don’t really observe what is going on around them so I doubt many people have noticed. 

I discovered last week that Marks and Spencer have a range of post surgery bras. At the moment I need something front fastening and soft, so have this one. But have already found a company that sells colourful and pretty soft bras and have one on order. Soon I will buy something much more delicate. I want to be able to feel at least a little sexy. The insert I have is soft and while it feels odd I can see that it does look pretty normal from outside. 

I am pretty bruised – I even have a shiner on my remaining tit (I wonder how that happened). but at present the scar is hidden by dressings. My body looks weird to me and I know to him too. We are not quite ready or indeed able for him to explore it. But we are speaking about the changes to my body, my body image and what that might mean.

There is a long road ahead and it has only been a week, but we have coped amazingly well considering. I am not brave or special, I just want to be able to look back and know that I have managed this process in the best way I can. This might not have always made me popular, but I am not changing my personality for anyone. What is more, I could not have done this without the love, care and support of the man I love. The man who is my Master.