Chapter 6

The day of the charity ball. I travelled about an hour away to see if I could swap my wig because I had never worn it. I had a consultation, and the assistant asked me if I had cut the wig, to which I replied, ‘No.’ She then went to get another wig in the same style to see if I had actually cut it… I felt so cross. I was already emotional and going through a tough time; she might as well have straight out called me a liar. Even when she realised that the other one was the same, she didn’t think it worthy of an apology. But she did find me a wig I was happier with. We went for a pub lunch and a play in the park on the way back, and then I slept in the car going home.

I got ready for the ball that evening. I was really nervous that people would not turn up, and I felt very conscious of the way I looked, even though I’d had plenty of reassurance.

I need not have worried. More than one hundred friends and family turned up. Friends travelled from as far away as Newcastle, and from loads of different chapters of my life. I felt overwhelmed. Alison had made cakes, Stacey and Alina continued to sell raffle tickets that night, and many of my friends had donated gifts. We raised £3151.50 on the night, and also (unbeknown to me) my friends from school had secretly made a ‘Just Giving’ page. This had raised over £500. In the morning we delivered the money to the Lingen Davies Centre and they were thrilled.

After we dropped the money off, we headed for Cornwall and rang my parents and their partners, and Wes’ parents, to tell them how much money we had raised. They were all really proud of us. We had a lovely journey down there, stopping at the ‘Farm Shop’ Gloucester services, which in our opinion is one of the best.

We stayed with friends of ours in Cornwall for a few days. We had trips to the coast, some beautiful meals, visited a food festival and had some lovely ‘heart to heart’ catch-ups.

Back from Cornwall, and ready to face Chemo Number Three. Another long day in the centre.

The first few days afterwards were not too bad, and I kept a brave face as ‘the boys’ were heading off to Rome to watch the football. Mum wanted me to go and stay with her, but I wanted to be in my home. I promised her I would ring if I needed anyone – and, to be honest, I was totally shattered and I just needed to sleep through the joint pain, if at all possible! I had tried every herbal tablet going for flushes, and none of them seemed to make much difference.

Whilst the boys were away, I had a lot of ‘thinking time.’ I was finding the hot flushes from the chemo – and the lack of sleep – way too much. I made a GP appointment. It was a lady doctor. I actually broke down in her room; there was nothing she could give me for the hot flushes because I had cancer. I spoke about how unfair I felt this all was, and that I did not know if I could face any more chemo, and how I was going to tell Wes, Chaz and the rest of my family if I made this decision, but I had never felt so shit! I did not see the point of feeling like this if it was just to buy me a small amount of time (yet another question that nobody could answer). I wanted to scream and smash things, I felt so angry with the world. The doctor held my hand and simply listened. I felt better for the offload, as I tried to stay so strong for those around me. I

later sent an email to the surgery to thank her for her compassion and time.

I continued to be constipated, and the joint pain was horrendous. This was a very dark time. My stomach was distended, so I rang the Chemo day centre and spoke to my named nurse. She advised me to ring the Oncology Line. I spoke to them, and they organised for me to have a telephone call from the Acute Oncology Nurse the next morning.

As promised, she called me, and arranged for us to meet on the unit. I was examined, and she talked about the possibility of ascites, and explained that if this was the case, I would need a bed and a drain. I told her I wasn’t sure if I wanted to continue with treatment because I felt so shit, and if my life was going to be cut short, I wanted to enjoy it and not feel so crap. She spent ages with Wes and I, explaining a lot that we had either not understood or not been informed about. She talked about diet in so much detail, talked about holistic as well as medical approaches, and told me about a meditation CD called, ‘The Secret Garden’ (this helped me relax loads). She also explained how chemo changes the shape of your eyes, which was another concern I had, as sometimes I had not been able to see well at all. We felt we were treated as individuals, and she made me feel more positive about the situation I was in. She told us she would get us a scan and my results before my next treatment. Back home, I sent an email to comment on her fantastic care and the knowledge that she had shared with us.

A few days passed. I had heard nothing, so I phoned to chase up the CT scan. The original nurse was on holiday, so I spoke with another nurse. She was helpful, but that was only eventually… At the start she was really rude, and told me that a CT did not just happen overnight. This comment had made me feel that I was being a ‘demanding patient’, when all I was doing was chasing up what I had been promised. It wasn’t long before I had cried down the phone because of how she was making me feel, and her attitude seemed to change when she realised that I was upset. Nevertheless, I found her initial approach shocking. Being a nurse myself, even on my busiest days I would never have spoken to or treated a patient in this manner. She was also a specialist nurse in an area that I believe requires empathy and compassion above everything else.

I had my CT, and the original nurse called me back with the results. She told me that the chemotherapy was working as it should be, and that she wanted me to seriously think about carrying on with treatment. I told her I would, but I was going to take a break to recover physically and mentally before starting again.

The next day the secretary called me to make an appointment with the consultant for my results. I told her that I had them. She seemed to think I had requested these results. There was obviously a communication issue; sadly, I did feel that this sort of thing happened on a regular basis during my treatment.

So I told my family and friends that I was going to have a break from chemo. They all seemed to understand my reasoning for this. I was just too exhausted mentally and physically to continue. I was suffering with what is called ‘chemo brain’; my memory was awful, and I would repeat myself loads and could not remember the simplest of things. We did laugh at times about this, but in all honesty, it was a frightening time,

and I can only think that this must be how it feels with Early Onset Dementia.

I was told by Sarah that I was probably entitled to get a payment from the government called ‘PIP’ (Personal Independence Payment) This was a very difficult payment to apply for, as it required the doctor to fill in a form where they expected your life expectancy to be six months or less. On collecting this form, I sobbed and became very angry, asking that common question that no one can really answer, “Why me?”

I had arranged to go and meet Sarah and her fella that weekend for a BBQ, but I spotted an opportunity online to stay in a shepherd’s hut, in the middle of nowhere at a price not to be missed. Sarah, being a cancer patient herself, was totally understanding of me cancelling and ‘going off to make memories.’ We loaded up the car and drove to Powys to ‘the hut in the middle of nowhere.’ It was beautiful weather and an equally beautiful spot.

I continued to be in pain from the constipation and in my joints, but I was determined to have a fun and relaxing weekend away. The hut had an outside kitchen, shower, fire pit and hammock – it was just amazing. We enjoyed the evening, cooking food on the fire pit and playing board games, and Wes taught me how to play chess.

On the Sunday morning I woke with an agonising stomach ache. I took myself to the bathroom and the only way I can explain the pain of opening my bowels was like childbirth but without the joy of a baby – just a poo. To give you some idea of the circumference, it was that of a can of pop and it was certainly not flushable… At the time it wasn’t funny but as I sit at my desk writing this, I am honestly laughing. We had to get a stick to break it down…. My friend Cheryl and I often share ‘poo stories’, because almost every medication I was taking had the side effect of constipation. One thing was for certain, I certainly felt better afterwards, and at least two stone lighter.