Feeling flushed!!

I attended my review appointment with my Surgeon a week after my drain was removed. She felt no further drainage of the swelling (seroma) was needed as it would risk introducing infection to the area. She advised me to continue the lymphatic massage and the exercises. She also identified that I was developing some axillary web syndrome (cording) which would need treatment by the Physiotherapist.

Cording is when a web of thick, ropelike structures develop under the skin of your inner arm. In my case these were restricting the range of movement at my left shoulder.  They were located  in my armpit and were hard and really tender to the touch.

Click on this link for more information about Cording

I managed to get a Physio appointment for the next day. The Physio service is very prompt to minimise the risk of the cording worsening. My sister who is also a Physiotherapist came with me to the appointment. Sounds a bit like a Paddy Irishman joke….what do you call three Physio’s in a room…. Please leave your comments below…

At the appointment the Physiotherapist assessed the range of movement at my shoulder. Whilst I was lying on my back she began to work on releasing the tight tendons (cording) in my left armpit. I have to say this isn’t the most pleasant experience, in fact it is very painful. A lot of grimacing and holding my breath and half an hour later there was a definite increase in my range of movement. She gave me further exercises to practice at home and advice on how to continue releasing my shoulder with Claire’s professional assistance!! I had been told that in order to have my radiotherapy I would need full movement at my left shoulder.

Over the next few weeks I continued to practice my exercises three times daily. I ensured that I encorporated it into my strict rehabilitation regime. My sister Claire treated me three or four times (sometimes even bringing tears to my eyes….. younger sibling payback ?????). Over time my left shoulder movement was virtually the same as my right. It was so important to keep going with the exercises otherwise I would have created more problems for my shoulder and arm in the future. 

During this stage I also attended an appointment with the Oncologist to discuss what was to happen next. She had referred me to the Consultant responsible for Radiotherapy and advised I would have a Planning appointment in a couple of weeks. She gave me a prescription for Tamoxifen - a medication I will now take DAILY for the NEXT TEN YEARS. This acts to suppress my oestrogen levels.The tumours were oestrogen sensitive. There are a large number of potential side effects with this medication so I was a little unnerved by what I had ahead of me.

After a short period of time taking the Tamoxifen I started to have frequent hot flushes. These were more severe than those I had experienced whilst on the chemo meds. They were happening during both daytime and night time.

Click on this link for more information about Tamoxifen

It creates a really bizarre sensation where your entire body feels like it is totally overheating. Sweat begins to trickle down your face and neck, clothing has to be shed. At night the duvet has to be thrown off bed sheets have to be changed. I bought ‘keep cool’ bed sheets and duvet covers from Marks and Spencer which definitely help. Also I have found wearing thin layers of clothing helps. It is extremely embarassing when you begin to overheat in a shop or restaurant. I usually start shedding clothing layers and make a hasty exit outside for some cold fresh air. The flush tends to settle quite quickly by which stage my make up has begun to slide of my face…pretty eh!

Click on ths link for more information about managing hot flushes

So far I have been very fortunate and haven’t experienced any of the other side effects. I am very grateful, as the joint pains that many women experience are debilitating.

Another stage???

A week after my surgery I attended the Breast specialist nurse to have my dressing checked and the second drain removed. Just like the first drain a quick cough and it was out. However there was a large amount of fluid draining out of the drain site. There had been a puffiness around the site of the drain over the previous 24 hours and minimal amounts accumulating in the drain itself. This is apparently quite common, the tubing can become a bit ‘gunged’ up. By removing the tube the build up of fluid now had somewhere to go. The fluid was trickling out and down the side of my ribcage. It took the nurse about 20 minutes of very patiently massaging the area to encourage the remaining fluid to escape. Then just like with a TV remote control, she also replaced the batteries in my PICO dressing! Before anyone asks it can’t act as a substitute for the Sky remote when it goes missing….!!

For the next few days I kept looking for the drain when I went to move or stand up, amazing how quickly it had become a part of me. However, no longer having it gave me a lot more freedom. I wasn’t having to disguise it in my coat when I went out for a walk (I would safety pin it onto my top). I found showering much easier with only the PICO dressing to be careful of.  

Several days later I had to contact the Breast Specialist nurse as there was a solid lump about the size of a golf ball forming in my armpit. It wasn’t sore but I was aware it was restricting the movement at my shoulder. The nurse asked me to come down to the Breast clinic the next morning. They performed an ultrasound of the area and confirmed it was a seroma (a seroma is a collection of fluid which can collect under the wound or in the axilla following surgery).

Click on this link for more information about Seroma's post breast surgery

They decided it would need to be drained under ultrasound guidance. A needle was inserted into the seroma and fluid was drained from it. They were able to determine there was no infection from the colour of the fluid aspirated. The area improved immediately, the solid lump was now softer and significantly smaller, the range of movement also improved with much less tightness.

I continued to be a dedicated patient and perform three sets of my exercises daily alongside my manual lymphatic drainage. I wanted the best outcome from this process so I was doing everything I could to achieve that. There were times when I really could not be bothered. Feelings of tiredness, pain, pissed off with being in this situation all combined to occasionally limit my gold star student behaviour. However, a combination of my inner Physio, Craig and my sister Claire (who is a STRICT Physio lol!) always dragged me to do the 3 sets.

Despite my dedication the seroma reoccurred about 4 days later.   I reattended the clinic and they repeated the ultrasound scan of the seroma, it had solidified again and was obstructing my shoulder movement. The Radiologist confirmed he wanted to attempt a second aspiration under ultrasound. Again the fluid removed was clear and uninfected.  I was to be reviewed by my Surgeon in a week.

I had an appointment to attend the Breast clinic for my results. (The breast tissue removed had been tested to establish how successful surgery was). My surgeon was unfortunately off so I met another Doctor (with no bedside manner and lots of Dr speak, this was quickly addressed by Craig) who explained the tumours had been removed alongside all of my axillary lymph nodes (11 of 13 had cancerous cells in them).

This was all a bit of a shock to be honest. I was overwhelmed by the extent of the spread, despite the initial sign being only that tiny dried pea. She confirmed that I would have a course of Radiotherapy aimed at mopping up any remaining cancerous cells at the wound margins and in the remaining lymph nodes around my collarbone and breast bone. I would meet my Oncologist in the next few weeks for further details of the Radiotherapy plan.

Click on this link for information about Radiotherapy

This wasn't a big surprise as all along they had mentioned the possibility of Radiotherapy. Despite this, at times it feels like this journey is never ending. Once a stage is completed there is always another new stage just waiting to start.  It is mentally exhausting and sometimes it feels like I have lost Lorna somewhere in the middle of it all.

The long road begins...

I had a real sense of security when I was in the hospital. It was a safe environment for me to become accustomed to the drains and dressings.  However, when I went home the rest I got was vital. The hospital isn’t the most peaceful of places. I slept so well that first night at home.

Small adaptations to my NORMAL sleep routine were needed. I positioned myself (with Craig’s help) virtually upright in bed against a stack of pillows and probably the best purchase – a V shaped pillow  (I definitely recommend!) The drain was on my left side so I swapped sides with Craig, so I could sleep on the left side of our bed. The wound drain could then be safely placed over the edge of the bed onto the floor. This change in sleeping arrangement was odd initially,   However, total exhaustion meant I got to sleep.  I know it may seem such a minor thing to mention my sleeping habits, but I was so exhausted that good, quality sleep and rest was initially the most important part of my rehab.

Another challenge I hadn’t envisaged was repositioning myself in bed. This isn’t the easiest to do in the middle of the night with only one arm to assist. There was always a lot of shuffling around the bed, moving in a very awkward way along with a number of swear words! Craig has also become an expert at pillow positioning….. move over Florence Nightingale. 

On my second day home I had a bit more energy, my long sleep had helped.   However, perish the thought I would have an uneventful return home….the tubing of my wound drain separated from the collecting bottle (this means the vacuum had stopped working and therefore the drain is no longer working.)  

Why do these things always seem to happen late on a Saturday night?! I phoned the ward I had been a patient on and arranged to go there straight away to have the drain changed. I was anxious that leaving the drain until the next day would allow fluid to build up and potentially lead to further problems. When we arrived the nurse was waiting for us and she had everything ready for a quick change! Once the drain was changed the bottle began to fill again with fluid. Almost as efficient as a Pit Stop in the Grand Prix, twenty minutes later we were back on the road and heading home to sleep. The drain issue had happened twice on the ward whilst I was an inpatient. The connection is very poorly designed and seems to get dislodged very easily, any medical equipment designers out there please take note….

My days fell into a routine of pain relief, shoulder exercises, a short walk and lots of rest. Not the most exciting but exactly what I needed. I continued to eat two eggs every day alongside the Fortisip drinks which I took twice a day. Both are high sources of protein and prescribed by my surgeon to promote wound healing. 

Click on this link for more information about coping day to day after mastectomy

I would be lying if I said I was comfortable, there was a significant amount of discomfort at the wound site.  However, regular pain relief helped, it allowed me to keep my arm moving and perform my exercises properly. In addition, the daily manual drainage massage of my left arm was moving any fluid that was gathering around my armpit and shoulder. Craig was also  massaging twice a day across my shoulder blades to help move any fluid collecting there (I had also had axillary lymph node clearance). The skin around the back of my arm and armpit was extremely sensitive to the touch, almost like very bad sunburn in some areas whilst in other areas completely numb. In order to complete the surgery, nerves supplying these areas had to be cut and having an altered sensation is a common outcome.  This can be temporary or permanent. However, the daily massage may reduce the skin sensitivity over time.

Click on this link for more information about skin sensitivity and numbness after surgery

Showering and dressing were probably the most tiring activities, juggling the drain and PICO dressing weren’t getting any easier. I continued to put the PICO control under my hat and would have to swap the drain from hand to hand whilst I showered (on the days Craig didn’t hold the shower for me!) I found I needed to sit down and rest before I could even contemplate getting dressed after a shower, as I was just too fatigued. This overwhelming tiredness would just suddenly appear. Everything needed so much more time and planning than normal. This in itself adds a lot of frustration. I am still a young, fit woman it was really difficult to adjust to feeling so totally helpless at times.

After a few days my energy levels began to plateau, I felt much better than during those first few days in hospital. However, the energy expenditure of only using one arm when doing even the most basic of activities was energy sapping. Maybe my expectations were a little unrealistic, I hadn’t expected to feel as tired or as vulnerable after the surgery. I think I had prepared myself for the emotional impact of losing my breast, but I hadn’t considered the significant emotional impact my fatigue and my inability to cope independently would have. I have realised that I am quite stubborn and get very frustrated when I have to ask for help. (Family and friends probably already knew this about me!!) This has been a VERY sharp learning curve for me. I have had to accept I need help. To open and close the car door with only my right arm is almost impossible, I struggle to put my socks and shoes on and tie my laces (so I went out and bought a few pairs of slip on soft shoes)…I know ridiculous isn’t it, such basic things. However, I know these are just temporary issues and I will get stronger with time…. I just need to be patient, this is just the beginning of the building up process…