Summary

This narrative is related from my own perspective and is about my mother’s diagnosis and subsequent treatment for cancer last year. My mother is a full time carer and has been for some time. This is an important element of this narrative as it affects her life in general, her role in our family and her own personal feelings towards medical treatment.

Context

My wider family situation was very relevant to the experience so I will briefly outline it in this section.

My family is from rural Ceredigion but as my father’s health deteriorated my parents moved to South Wales because they needed more support. My brother lives in Caerphilly and I live in Penarth. My parents therefore moved to Llandaf in Cardiff to be near to us both and to be near to the Heath hospital which provides much better care than they could have hoped for in mid Wales.

My father is in his mid 70’s and has been increasingly disabled for the last twenty years. He is now unable to walk and needs full time care and support. He is on a cocktail of twenty-seven different medications and is an insulin dependent diabetic which has to be carefully monitored several times a day. He has had several strokes, heart attacks and a pulmonary embolism. He also suffers from dementia.  My mother is his full-time carer, which is a very stressful and unremitting role.

My mother has severe arthritis herself which gives her a lot of pain and which means she cannot walk very far or carry much. She also has high blood pressure. She has been taking very strong painkillers for many years. She is in her mid 60’s.

My brother and I both work full time but we help them with shopping and housework etc. every weekend and on the odd evening during the week whenever possible. We are a close family.

When my mother was diagnosed with Cancer my main reaction was complete and utter shock. I was used to one medical crisis after another; as a family we have a method and a process for coping with this and we all have clear roles in the family for dealing with this but as this was my mother’s life at stake it was truly horrifying and shocking. We all expect Dad to be ill and to always need looking after but (even though mum has health issues) she is the carer and the one who does the looking after. The thought of her not being there or being suddenly seriously ill is unthinkable.

Prior experiences with hospitals

My parent’s everyday life is often characterised by making visits to hospitals and specialists of various types and has been for many years. They often have a different appointment with a different specialist every day of the week. Logistically these trips are very difficult for my parents as my mother is no longer able to drive and has to take a taxi or wait for an ambulance (or have a lift from my brother or myself when we can get the time off work). My mother is exhausted by these visits. She has to ask for help from people to push Dad’s wheelchair and the whole thing is a logistical nightmare.

Furthermore, none of the specialists ever talk to each other and my mother has to try to provide the context for them (which they largely ignore). The lack of consistency and joined up process has serious consequences, for example one Dr will change Dad’s medication and it might conflict with some treatment he has for another condition. Mum feels disempowered, frustrated and let down in these situation as she researches all his medications and possible side effects etc. She is often ignored however. They ask him how he is and ignore her observations. He has dementia though and therefore cannot answer questions as well as she can on his behalf.

She is quite a worrier in general but when she herself has medical issues she is often very unwilling to go to hospital as she is so sick of the whole process. She doesn’t feel this way about visiting the GP though, who she sees as a supportive person to talk to. In general however she is very disillusioned with the NHS due to her experiences as a carer.  Due to prompting from family and the GP she went for routine breast cancer screening in early August last year.

Diagnosis

After having been for the routine screening she had a letter in the post about a week later which asked her to come back for more enquiries as there had been an abnormality in her results. She was very frightened but my brother and I reassured her that this was just routine (the letter said that ¾ of patients called back would find that there was nothing to worry about).  I booked time off from work to go with her to the centre on Cathedral road in Cardiff so that I could drive her and support her emotionally. My brother booked time off from work so that he could be with my Dad (who cannot be left alone).

We were running late due to the various palavers of getting Dad up and dressed and doing his medicines etc. and when we arrived we couldn’t see where to park near to the door. As mum can’t walk very easily I dropped her off at the door and went to park the car. She said she’d just report at the front desk but would tell them that I was on my way and to ask if she could wait till I was back (to hold her hand) before she went in to see the Dr.

By the time I had found a parking space and walking back to the breast centre Wales building she had been called in however. I asked if I could go and find her but was told that they couldn’t let anyone in as it was a private area. They gave me some literature to read and told me to wait. There were a lot of family members and husbands in the waiting room, which was brightly decorated with beautiful tapestries made by the women’s guild on the wall.  The people left in the waiting room were all silent, serious and keeping themselves to themselves. It wasn’t somewhere where people talk to each other as you didn’t know if you were someone awaiting bad news or if they were.  Some people came out crying and some came out looking relieved. Everyone left the waiting room very fast as soon as their loved one came out.  I sat there for two and a half hours watching people come out who had gone in after I arrived and trying to work out if this could possibly be a good sign. I still couldn’t entertain the thought that it was anything other than routine. Eventually my mum came out looking flustered and trying to get her coat and shawl untangled.

She was in such a state that I couldn’t understand what she was saying but we couldn’t talk about it in the waiting room without disturbing all of the other worried people there. I couldn’t leave mum alone and I knew that she wouldn’t be able to walk to the car. I didn’t know what to do but mum was disoriented and we needed to go somewhere to sit down. The only thing I could think of was to try to walk to the Mochyn Du pub which was round the corner, where mum and I could sit down and have a drink and where she could sit when I had to go and get the car. We sat in the doorway and mum was just glad to be away from the screening centre. We had two soft drinks and she said that they had done a biopsy which was still painful and that she had breast cancer. They had given her a lot of information that she wasn’t able to digest and relay clearly because of the shock. When she was settled and ok I went and got the car, picked her up and took her home to tell Dad and Clive what was happening.

The Oncologist

Soon afterwards a meeting was arranged with the oncologist to work out the treatment plan. Both my brother Clive and I attended this meeting to be sure that we had all of the facts and could support mum.  We also researched possible outcomes, prognoses etc. on the web so that we might be better prepared for what would follow. A friend of my parents sat with my dad. The doctors there were all very nice and supportive but they didn’t say very much, they confirmed that Mum had a stage 1 cancer (meaning it had been caught early) but it was level 3 (meaning the most aggressive kind). When they said this they didn’t say much else they were quite quiet so that you were able to digest what this meant. We asked a lot of questions but they were not able to give any firm answers before operating and removing the cancer. She had to decide whether she would have a lumpectomy to be followed by radio or chemotherapy or a mastectomy. The medical people, my brother and I tried to help her but not to influence her decision.  We wanted to support whichever option she preferred but it was hard to know what was the best thing for her and for her medical outlook. She was able to go away and think about it for a week and in the end she decided that she would prefer to go for the first option as she felt she would be disfigured by the second.

The operation

An operation was arranged very soon (only a couple of weeks away). It was in Neath Port Talbot hospital. My mum was very scared about going into hospital and having an operation. She was scared about leaving dad overnight and she was also very scared that she would not wake up from the anaesthetic due to the pre existing high blood pressure and all the pain killing medications she was on. We were all very very worried. Mum even wrote a will and for the first time Clive and I had to start to think that the unthinkable might happen. Dad was aware of everything going on but he couldn’t do anything to help and this was very hard for him too.

Clive and I both went with mum to the hospital and we paid someone to stay with Dad during the day (Clive spent the first night with dad and I spent the second).

The ward was full of other ladies in the same position and there was a lot of support and camaraderie from them. They had all developed quite a fighting spirit and were all supporting each other and that helped a lot. There was a lot of waiting around. We had been told to arrive at the hospital at 8am but mum wasn’t told that it was time to go until late afternoon. The other ladies all went down and came back one by one. Mum wasn’t able to eat or drink and her mouth was very very dry all day.  Clive and I were told that we couldn’t be on the ward as it was outside visiting hours but mum was terrified and clinging to our hands so we tool it in turns for one of us to be in the day room and the other to get the regular tellings off from the nurse as we stayed with mum (we could not leave her alone).

While we were waiting, there was one poor lady who had been given the anaesthetic and wheeled out of the ward only to be wheeled back in because the surgeon would not operate as they hadn’t had a test result back that they needed. When she woke up she had thought that the ordeal was over and that the cancer had been taken out but had to be told that it had been aborted. She cried and cried for some time and we felt terrible for her.

We were exhausted physically and emotionally. Clive and I waited, in the day room and went for something to eat. We phoned Dad to let him know what was happening. After two hours we saw mum being wheeled past us, She was unconscious. We alternated sitting with her so that she didn’t wake up alone again and were told off several times by the ward sister. The one who wasn’t sitting with mum went outside and went through the list of relatives that mum had given to us to phone through and tell that she was ok. This all took some time but they were all worried. Mum seemed to be a bit more conscious (although later on she didn’t remember anything that evening) and eventually Clive had to go to take over Dad-care duties. I stayed with mum till later on and then went home to sleep and to be ready for the next day when we would take Mum home. I would stay with her the following night to look after her and Dad.  The surgeon was able to speak to us all before she left and they had got all the cancer and they had taken the lymph nodes out for good measure although there was no sign that the cancer had spread.  We felt as though we had come through the biggest challenge.

Treatment

Later on we realised that the thing about cancer is that it isn’t just one hurdle, you are always waiting for it to come back or to find where it might have spread and be lingering. We also had to wait to find out what form the post operative treatment would take. Mum was terrified that she would not be able to cope with chemotherapy medically due to her other conditions. She was scared of loosing her hair and of being sick but she was also scared that she would not be able to look after Dad if she had chemotherapy. Dad was scared for mum but also of going into a home and Clive and I were just terrified of what the future might hold in every respect and trying to take one day at a time. Clive is an IT contractor and chose not to take any new contracts so that he could be there for the duration of Mums follow on treatment in whatever form it might take.

Follow up visits with the oncologist were mainly to talk about the next step treatment. Fortunately, we were eventually told that there was only a minor prognosis difference between the two in this type of cancer and that in this case they did not recommend it. Instead Mum was to have three weeks of intensive radiotherapy followed by hormone treatment which would carry on indefinitely.

The radio therapy was done at Felindre hospital in Llandaf which is very near to where mum lives and Clive went with her every day. It made her very tired and she struggled looking after Dad. Clive and I took over Dad and domestic duties as much as possible in order to help.

We often felt very sorry for the other patients that we saw in Felindre. Some so brave, so ill and either being supported by worried families or who were completely alone. In either case you felt so sorry for everyone involved. The hospitals staff were wonderful however and they have clearly made a huge effort to make Felindre a nice environment. They even offer massages, aromatherapy and Reiki healing sessions.

Mum is now in remission and taking hormone tablets to fend off future reoccurrences.

Looking back

Looking back I feel incredibly grateful. Things could so easily have been so different. I was in a state of sublime ignorance before mum was diagnosed with cancer. I loved her and valued her and was aware of how much we all rely on her but it had never really occurred to me that she could and would one day not be there.

Many of the people we saw at Felindre hospital were young parents who looked battered and bedraggled due to their illnesses and the side effects of their treatment. They must never have thought that this would happen to them and were all being so brave. Many of them did not have the positive result that my mum did.

The cancer could ( God forbid ) come back but I hope and prey that it wont and you can only take one day at a time and value the people around you while they are there.