Breast cancer - a husband's perspective
From Barry Hyde
The Story Begins
We were staying at Ann’s sister’s caravan over the Easter weekend. Ann was first up on the Saturday morning and went for a shower. Whilst showering Ann detected a lump in her right breast, but didn’t mention this to anyone at this point.
We arrived home on the Sunday, and on the Monday morning, again after showering; Ann brought what she had found to my attention. My immediately reaction was “make an appointment with the doctor as soon as you can”. As it was a bank holiday, the earliest Ann could ring for an appointment was Tuesday. She saw her GP on Tuesday, who examined her and said, “In cases like this, I will always refer to the hospital, where an expert examination can take place”.
The hospital response was immediate. Ann was given an appointment to see a consultant surgeon the following Thursday.
Ann was quite confident that the lump would probably be a cyst, as she had experience of these in the past.
We arrived at Burnley General Hospital for her 3.00pm appointment and were seen by a junior doctor, who performed an initial examination. He then brought in the consultant surgeon, who also examined Ann and instigated a mammogram and the removal of tissue for biopsy. We were shown the mammogram film by the radiologist and saw the tumour clearly. A further appointment was made for the following Thursday, to receive the results of the biopsy.
The following week was hell for both of us although Ann remained positive throughout. By Wednesday, the lump appeared to have reduced in size and Ann said “don’t worry about coming with me tomorrow; I’m sure it’s only a cyst”. My experience of life over 54 years is that when thing are going well, watch out! Something usually kicks you in the teeth. Consequently I insisted that I would go with Ann, and had prepared myself for the worst.
Thursday arrived, and we were both very nervous although Ann was still confident that all would be well. As we walked into the consulting room, I could tell from the expressions on the faces of the staff present that it wasn’t going to be good news. The consultant didn’t delay and told us that the tumour was cancerous and that Ann would have to have an operation to remove both the tumour, and the lymph nodes under her right arm as a precaution. Both would be examined and subsequent treatment would be recommended on the basis of these results. Ann was absolutely devastated at the news and couldn’t really take in what was being said to her. I guess that I had prepared myself for the worst and tried to engage with what was being said. All I now wanted was for the tumour to be taken away and to support Ann as best I could. The surgeon looked through his diary and arranged for Ann’s operation straight away. She was scheduled for her surgery 2 weeks later. When we left the consulting room, I turned to Ann and said “nothing else matters from now on”. This was a life changing moment for me.
We were taken from the consulting room by one of the oncology team’s breast care nurses, who took us to a quiet room, gave us tea and patiently went through the implications of what we had just been told. She was excellent.
Coping with the loss of control
My feelings over the coming days ranged from panic to frustration. I felt that the situation was out of my control although I wanted to do everything that I could to “make things better”. I quickly realised that there were lots of areas where I could help. Ann wasn’t really able to take in what was being said by the medical team. I had already found a role that I could take on, that of interpreter. I would be able to discuss at home with Ann what was being offered regarding treatment and the consequences of the treatments. We were given a comprehensive array of leaflets, dealing with all aspects of living with Breast cancer.
The news had consumed our lives. It became the only thought in our minds, the only topic of conversation. We spent many hours, night and day, talking. At times I discovered that Ann was sitting alone downstairs trying to deal with what was facing her. This angered and frustrated me to a point that I insisted that she wake me whenever she needed to talk. My aim was to both dispel any fears that she may have or concerns regarding what was about to happen. It was important to me that Ann understood precisely what was happening and help maintain the confident attitude that was trying to prevail. This was my role.
Ann soon realised that actually she wasn’t ill, and she didn’t want friends and family to treat her as though she was. From that moment she has been completely positive about the whole situation. Her attitude has been infectious and has enabled people around her to openly discuss her cancer and the subsequent treatments.
The day of the operation arrived. Ann was very nervous, particularly as she had never experienced an operation or a general anaesthetic before. We arrived on the ward, and the staff nurse showed Ann to her bed. This was all new, but typically Ann soon started to introduce herself to the three other women in her bay, coincidentally called Ann, Annie and Margaret. I left her to settle in and returned later in the evening. Ann’s operation had been scheduled for the following morning. I arrived early, as I had planned to go down to theatre with her. She insisted that she didn’t want to go down on a trolley and so she went by wheelchair.
As Ann’s tumour was small, the surgeon instructed that a guide wire be placed into the tumour pre-operation. We went down to the x-ray department where this was done. We then returned to the ward to await the call for Ann to be taken to theatre. We didn’t have to wait long and we were on our way. I couldn’t go past the theatre exterior doors and so there was an emotional farewell as Ann passed through the doors and into theatre.
I knew I couldn’t just hang around waiting for her to return to the ward. I remembered that Ann had been talking to Gillian, a woman on the same ward, who’s daughter had given her a shoulder bag to carry her drains in post- operation (drains were always inserted into both the breast and the site of the lymph glands to drain away any fluid and blood build ups). The bag enabled patients to move around the ward more easily. I decided that I would go out looking for a similar bag for Ann; this would be a surprise for her when she came round from the operation and it was a distraction for me regarding the operation.
I arrived back at the ward as Ann was coming round, although she claims only to remember me giving her sips of water through a straw. There was a potential problem discovered by on of the nurses, who had found a swelling under Ann’s right arm. It may have been a Seroma, and there was a possibility that she may have to return to the operating theatre to deal with it. The doctor was called and instructed the nursing team to observe the swelling over the next few hours and not to allow Ann to eat or drink. At this point Ann had not eaten for over 24 hours. By late evening the swelling had reduced.
The following day I arrived to see her up and about, talking to her fellow patients. She still had a saline drip in, which restricted her movement. However, soon after I arrived, the nurse took it out and I wheeled her to the restaurant for coffee and a change of scenery. Even at this point Ann was desperate to get home, but because of the swelling, it was decided to keep her in.
Out of the Safety Zone
Saturday arrived and Ann was hoping that the consultant would allow her home. Later that morning a received a phone call demanding “I can come home, pick me up immediately”.
We arrived home, and immediately I felt nervous, even though help was only at the end of the phone, Ann still had both of her drains in and I didn’t have the comfort of a team of nurses around me if anything went wrong. Typically that evening, Ann had gone to bed, or so I thought. She came back downstairs clutching the end of one of her drains and exclaimed “what should I do with this”. I initially panicked, but realised that there appeared to be little coming from the site, so we decided to re-assess the situation in the morning. Morning came, and we awoke to blood stained bedding. I immediately called for the district nurse, who’s number we had been given. We waited two hours; meanwhile I was applying dressings to try to stem the small flow of blood and fluid. The district nurses finally arrived to the comment “we are here to answer your SOS”, this really annoyed me at the time, although I now know it was an over-reaction to the situation, but when it was happening, it scared the hell out of me. The nurses suggested that I take Ann back to the hospital, where they were better equipped to deal with this situation. I rang the ward, explained the situation to the sister who instructed me to “bring Ann straight in”. The drain falling out subsequently proved to be a frustration to Ann as the site had to be manually drained on five occasions before there appeared to be an improvement. Her main surgical incisions were heeling fine but the seroma was hampering her recovery.
Another breast care nurse had been allocated to Ann, who visited us at our home, and spent time explaining all and any aspect of Ann’s treatment that we were concerned about. She was attached to the Burnley general hospital oncology team, and on her first visit, which was before Ann’s operation; she went through everything with us, was very positive in her attitude and made clear that if there was anything that we required we should contact her. This in itself was very reassuring. She became our main point of contact and went far beyond the call of duty to provide us with support.
It was made clear to us even before the operation that she would have to undergo further treatment depending upon the results of the tests on the tumour periphery and the lymph nodes. An appointment was made to see the consultant oncologist at Burnley the following week. She had explained to us that when the results were available to the team, they would meet to discuss Ann’s case and recommend a course of treatment that would best suit Ann’s circumstances. She explained that what was happening are a series of treatments and to take one treatment at a time; the first being the removal of the cancer.
When we arrived at the hospital for the appointment with the oncologist, Gillian, the woman that Ann had met on the ward prior to her operation, was also waiting for a consultation. This was the start of a friendship that, I felt would help Ann tremendously. Gillian was actually going through precisely what Ann was to experience, and nothing can substitute for that. They arranged to meet for lunch, and talked through their fears, emotions and concerns, and planned to support each other through their treatment.
The Cancer has Gone!
On meeting the oncologist, Ann was told that the tumour detected through the mammogram was a grade three, which is an aggressive type of tumour. During the operation, the surgeons had also found a further tiny grade one tumour, which they removed. The news that I dreaded was that the cancer had spread to Ann’s lymph nodes. We were quickly told that the lymph nodes were completely clear. I was absolutely elated at this news, but Ann didn’t seem to realise the importance of this until later.
Once the results were explained to us, the oncologist then explained the treatment that was being recommended for Ann. It was also made clear, at least to me, that all further treatment was preventative, the cancer had gone. Ann was to have chemotherapy followed by radiotherapy in conjunction with hormone therapy and finally a course of Herceptin. The Herceptin treatment was applicable to Ann because of the make-up of her tumour, which was HER2 positive. When chemotherapy was mentioned, Ann got quite upset, as she was concerned that she would lose her hair. It was explained to us that the side effects of chemotherapy affect each patient uniquely and that it cannot be predicted which side effects will affect Ann and to what extent. This would become the topic of many subsequent discussions between Ann and me. The breast care nurse then took us to the same room that we had used when Ann was first diagnosed and she went through all that had been discuss during the consultation, which gave us the opportunity to further question the course of treatment.
As we came out of the consultation with the oncologist I asked Ann what was the worst circumstance that she could imagine. She replied, “Losing my hair”. Ann hadn’t realised the significance of her lymph nodes being clear until we discussed this aspect with the breast care nurse in the subsequent meeting. I believe that once she did, a realisation that the Cancer had gone was monumental, and completely changed her attitude from that moment.
Ann was invited to take part in a chemotherapy trial at the Royal Preston hospital, the aims of which were to discover whether treatments could be accelerated and still have the same or better results. After much thought and discussion between us and various members of the oncology team, Ann decided that she would take part. My only reservation was that I didn’t want Ann disadvantaged in any way through the trial. We were given assurances that Ann would receive at least the current standard Chemotherapy treatment. We were invited down to the Royal Preston hospital to meet the research team and find out which of four possible groups the computer in London would choose for her. She was allocated to the control group and would receive the standard chemotherapy treatment, which Ann was happy with. Now, preparations for the treatment were to be made.
As it was possible that during her treatment Ann may lose some or all of her hair, she had decided to purchase a wig. A company had been recommended and so we arranged to visit the company. We were both stunned at the quality of wigs available. Having tried on other wigs, Ann went with the very first one she tried, which I have to say looks stunning. Scarves have also been bought in preparation. Seeing how good the wig looks has further dispelled some of the fears that Ann had of losing her hair during the chemotherapy treatment. False eyelashes have also been purchased as we were told these too may fall out.
Support from Friends, Family and Colleagues
A vital part of coping with cancer is to have the support of your friends, family and colleagues. The stigma of cancer has to be broken down to enable people around you to talk openly about it. Ann has successfully broken that barrier by being straight and honest in her approach, and above all positive. Your positivity will encourage positivity in others.
I have also experienced a lack of recognition that there are two people affected by this potentially devastating disease, and that the partner is often ignored and expected to “get on with it”. I found myself holding in my emotions until I was alone and wouldn’t be seen by others. I had to be strong for Ann, and seen to be strong by others. Those around me who did appreciate what I was going through were ultimately an essential level of support for me.
We were also lucky in that we have fantastic employers who completely appreciated what our needs might be regarding time off. Both were prepared for us to have “as much time off as it takes to get through this”. This was so important for me as I needed to be with Ann through the difficult phases of the diagnosis and subsequent treatment.
We also found that when we began to talk to people about breast cancer almost everybody had either been through it themselves or knew someone who had. I particularly found the former invaluable as almost all had been treated successfully.
Ann was getting quite frustrated having to wait for a date to start her course of chemotherapy. She now has it and seems ready for this next phase of her treatment.
What has been Gained?
It is often said that good things come from bad situations. I can endorse this wholeheartedly. From the moment I realised that Ann’s life was potentially at risk, my emotions ran riot, but most importantly, I realised just how much Ann means to me. It’s an old cliché but people do take relationships and life for granted, and, although not welcome, this was a wake up call for us. My attitude to life and in particular life with Ann has been brought back into focus. I have learnt much about myself, mostly good, and have seen Ann in a completely different light. I admire her strength, courage and honesty in dealing with this crisis. Her attitude has made it easier in some ways for me to deal with. My role in supporting Ann through the coming treatments is clear and uncompromising.
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