Getting the balance right

This third week since surgery, has been about getting back to normality and reality. But also about getting the balance right. I have been overwhelmed by everyone’s responses to these posts. They are essentially for me, a way of recording this journey. But as many people have pointed out, they will (hopefully) be useful to others in the future. 

Wound healing

Once the wound drain had been removed and I had got the all clear from the doctor, we returned to our Airbnb in Oxford. The two-week festival of song (Lieder) was still going on and we finally immersed ourselves in it. Finally free of the plastic tubing sticking into my side, on the bra line, along with the vacuumed bottle in a handbag, I could again wear dresses and longer tops. At last it was possible to lie comfortably on my side and even turn briefly onto my right side for the first time. We returned home on Sunday and later, took a relaxing jacuzzi bath together. Sipping Prosecco, and allowing the water to lap around my skin was heaven. After the bath I left all the dressings off as everything appeared to be healed.

Over the course of the week, the area around the wound seemed to be swelling up. A cushion was building under my arm once again. I wasn’t immediately worried about all of this, and anyway wasn’t really sure how it should all look and feel. The worst part was that my new pretty pink bra was too tight. Had I bought the wrong size, or perhaps put on weight. On Wednesday night I discovered that a small area of the suture line was oozing serous fluid. I put a dressing over it and went to bed. Luckily I had a hospital appointment the following day.

The doctor drained about 100mls of altered blood from inside the wound area. Luckily I didn’t feel a thing (a mixture of using the stitch line plus the residual numbness). I was pretty surprised, not to mention irritated that the small bump on my chest had gone. I wasn’t meant to have a baby breast, it should have been flat. He told me that it was likely I would need the area aspirating again. I will, because the area has swollen again. Luckily though it hasn’t spread under my arm. It’s pretty obvious the physical healing process is taking longer than expected. Not surprisingly this is getting me down a little.

Sex, drugs and rock and roll

Since the operation, I have been anxious that G would no longer find me attractive. To begin with he was nervous of the wound and dressings and also of hurting me. He was clear though, that he still found me attractive. During the course of this week we have resumed our sex life and thankfully that has meant many orgasms for me. I am reluctant to get on top yet because my wound area is a bit sore. The gravity pull when leaning forward is quite painful. It is weird that I have had more pain this week than after the operation. I have even resorted to taking a few pain killers (that is the limit of my drug use). 

There is no doubt I feel more positive about my body and his reaction to it. He has begun to touch and stroke my right side and that means a lot to me. I don’t necessarily like what I see when I look in the mirror, but I am getting used to it.

Our lifestyle right now isn’t exactly Rock and roll. But we have been able to return to socialising. On Wednesday we attended our local Munch and I caught up with Molly, Sub Bee and others. Thursday my brother visited and we had dinner out. Then on Friday I returned to my slimming group, had lunch with a friend and in the evening G and I went out to a concert. A busy few days indeed. 

Rest

Until the middle of this week, I was pacing myself well. I have been sleeping well at night and resting between activity. Even while in Oxford I didn’t feel especially tired. 

But yesterday I woke feeling exhausted. The emotional energy required to tell people about the event of the past few week is enormous. Doing so much on Friday was in hindsight a mistake and I see that I need to make sure I balance rest and activity. 

Feeling tired and emotionally drained made my mood low. I could easily have gone back to bed before lunch. Instead we walked into town and did a little shopping and then had lunch. Afterwards I took a nap and woke feeling much better. 

This coming week, I am going to try to work on the balance between rest, exercise and other activity. I have taken on a small piece of work that involves interviewing people by phone, collecting and reading some data and writing a report. It isn’t onerous but it is something else to juggle. There are also hospital visits once again. 

Over all, as I reach the end of week 3 I feel well. But recognise that as I increase activities I must take care not to over do things. Or to be too eager to get completely back to ‘normal’ life. 

Recovery- week 2

I am now 11 days into my recovery from mastectomy surgery and while I am still a little sore, I am healing well.

Physical recovery

Once the bruising started to come out, it was evident that it was widespread. Around the wound, towards my back and even on my remaining breast. After a few days the scar began to itch, I took this as a good sign. Everything was covered with dressings, which to begin with were waterproof. By Monday this week, though they were becoming wet and so I had to refrain from showering.

The drain site was the worst part. It gradually became more sore and I was constantly adjusting my bra. This is embarrassing since I was often lut when I needed to fiddle. Bloody fluid contined to to drain much to my annoyance. This meant that the nurses wanted to visit daily. We had things we wanted to do and we both became irritated with waiting in till 5pm. Other patients were more of a priority and so I only managed to be visited early once, on Sunday. They didn’t like me cancelling the visits even though it was clear I could manage the thing myself.

Thankfully, when I attended my appointment at the hospital on Wednesday the drain was removed. The site was on the verge of becoming infected and so this was the best option. There have been no I’ll effects and the swelling began to reduce almost immediately. I have a feeling that the drain was causing more problems than it was resolving.

The wound is healed, but there are still a few bruises and a little swelling under the arm. I can now step up the recommended exercises, which are necessary to make sure I regain full movement in my arm. It feels right and stretching my arm over my head is challenging at the moment.

I have found a company called Amoena that sells beautiful lingerie, swimwear and tops for people who have had breast surgery and have a bra and pants on order. If I am happy with quality etc. I may be spending a bit of money there.

Emotional recovery

In general I am feeling mentally strong. But certain events that have occurred over this last couple of weeks show that my mood can drop easily. For example the hospital transfer a couple of days after the operation made me weepy and very upset. Made worse by the confirmation this week that it had been unnecessary. Encounters with the nurses, a different one each time made my stress levels high. I am anxious about my body image and how it will affect our relationship going forward.

We have kept ourselves away from family and friends and this has helped. We have a way to go before I, he and we are comfortable with my body as it is now. I suspect that is something I will write about next week. Also in the coming days we will be seeing family and attending our local munch.

I feel ok speaking about the surgery and cancer with Master and close family but less sure of myself with others. I am clear though, I need to be open and not pretend nothing is wrong. This journey is far from over.

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. 

The deed is done

The rollercoaster events of the past few weeks came to a conclusion yesterday. Once the decision for me to have a mastectomy was made last Wednesday we began to make plans for the weekend. Being away from home helped, and while we obviously discussed the operation, we also concentrated on having a good time.

The music festival got off to a great start with workshops about the poetry of Lord Byron and it’s musical settings, followed by a day on Debussy. There were evening concerts and meals in our favourite restaurants.

On Saturday night we drank a little too much, and Master took a few photographs of me naked in our Airbnb living room. I don’t know if we will ever show them, but we have a few good shots for ourselves.

Sunday was spent at a study session, learning about classical composers and their music across European and transatlantic borders. Then we travelled home. Driving home in the rain we encountered heavy traffic, but once home spent the evening quietly.

By now we both felt ready to face the inevitable. It was time to get this operation done. The time for commiserations done. On Monday morning I had an early breakfast and then we went back to bed for a while. Snuggled together he stroked and kissed me before bidding farewell to my right breast.

It turned out to be a long day

Although we arrived at the hospital at 12.30, I didn’t go for the operation until 4.30. My son came over to spend the afternoon with us. A slightly surreal but pleasant afternoon passed.

My first ever anaesthetic and operation passed smoothly and by 6.45pm I had woken up. I was amazingly awake and felt pretty good. The first face I saw as I arrived back on the ward was Master’s. A feeling of immense relief passed over me. Within minutes I was speaking to my son on the phone to reassure him all was well.

As I lay in my bubble of post surgery euphoria, I snuck a peek inside the front of my gown. My left breast remains in tact, its nipple still holding the plastic bar I bought for the operation. My right side is flat, the wound hidden by dressings, it’s breast and nipple is no more.

There were 4 of us women in our shared bay, all recovering from surgery for breast cancer. After Master and other visitors had left we lay in our beds talking about our experiences to date. Reflecting on this shared journey. Our nurses were kind and compassionate, encouraging us to talk.

It was a long night

Only one of us slept last night and that someone wasn’t me. The ward was quiet, but each of us had our lower legs encased in machinery designed to prevent thrombosis. The intermittent noise generated by each one seemed to prevent sleep. Added to this, regular observations by the diligent nursing staff and alarms elsewhere meant none of us slept for more than a few minutes at a time. Still the sence of cameradey carried us through to breakfast at 7am.

While the two women who had lumpectomies headed home at lunchtime, two of us remain for another night. I am hopeful of being sent home tomorrow. I faced my bare chest in the bathroom mirror this morning as I washed and don’t relish the thought of seeing my scar. But this has to be faced, and now hopefully the cancer is gone. Difficult days lie ahead for me and for him. But we are facing this together.

Treatment plan

Yesterday morning, in my Wicked Wednesday post I wrote about the coming couple of weeks and my hopes for the impending surgery. In the afternoon I saw my consultant and now have the treatment plan.

Unfortunately the tumour is twice the size that showed on ultrasound. I was reassured it doesn’t mean it has grown that much over the past month. But that this kind of cancer is difficult to measure. This means I need a mastectomy rather than lumpectomy. 

The options for a breast reconstruction were explained to us. I am really not keen on having one largish breast and one completely flat area for ever more. So, I was hoping for a reconstruction at the time of surgery. However, the surgeon explained that the radiotherapy could damage a silicone implant. With a 40% chance of requiring further surgery because of this, we felt this was a no go. So, in a years time I will have a reconstruction by a plastic surgeon, that will take some of my own tissue to be formed into a breast. People, I get a tummy tuck too!! 

I have tried hard to be positive over the past month, since the biopsy was taken. But I feel the rug has been pulled from beneath me and I am struggling emotionally now. Thankfully, I only have till Monday to consider the decisions that have been taken. By that evening my right breast will be gone. I am luckier than most, I doubt many people have the library of photos we have of my breasts. But I don’t know how painful it will be to look at them afterwards. Especially in those first few days. 

I intend to try to be body positive about this and when the time is right I will show my body on my blog.

The road ahead will be challenging, but I have Master to support me and I have nice things to do. Today we leave for our music festival until Sunday and will return when I am well enough to do so. 

Thank you for the kind words of support here on my blog and twitter, it helps to be part of this wonderful community.