Life After Cancer - Round One

This post is the fourth in a series of pieces describing a time related to my cancer diagnosis and treatment through both my own perspective, and that of my wife, Cathy.

Hywel

It was a strange feeling after my radiotherapy finished. I had been through so much in the past 5 months and now was left 'in the cold'. No hurried scans, appointments, discussions or planning. Just a wait for the next Head and Neck Clinic.

We had been invited to stay at my brother-in-law's house in Malaysia. It seemed a perfect getaway. I was a bit apprehensive about the long flight but felt a complete change of scenery would be a good tonic for us all. It was very different and enjoyable, but at times a bit too much to take in - and after ten days I was glad to get home. I found the whole experience tiring. At least I had managed to prove to myself I could tolerate a long midnight twelve hour flight, and in hindsight I’m glad I went. The scar tissue hadn’t formed properly in my neck yet so it wasn’t aching too much.

Whlist in Malaysia, I had the courage to hold a snake. After surgery, nothing fazed me!

We tried to have a few things to look forward to. I found short term plans worked very well. I enjoyed short holidays or weekends away as long as they weren’t too far ahead. That was a risk I couldn’t take. Over time we settled into a routine. We had a few financial matters to organise. I briefly tried to return to work but it simply wasn't right for me.

Tenovus had been extremely helpful to us throughout this time, by giving all sorts of advice and encouragement. It’s amazing how little there is out there when your treatment from the NHS comes to a halt. It can be a very isolating experience, and one I found very difficult to deal with. We bought a cute little Cocker Spaniel in August 2008 and he was very good for me. Even though walking was difficult, it helped me to get out of the house when I felt I didn’t want to go anywhere.

My life was reeling at times. I had gone from being a full time teacher with a good wage to being nothing - that’s how I felt. I started doing some radio and TV work for Tenovus and enjoyed the experience. I've never had a problem talking about my cancer and feel it’s important to share the experience with whomever wants to listen.

View from the Sky Bridge - only half way up The Petronas Towers, Malaysia!

After being asked to help in the pilot scheme of the Tenovus Sing For Life Choir I started to feel less isolated. I was mixing with people who had been through a similar experience and was, and still am, enjoying the practice sessions and occasional concert now and then.

My father passed away in May 2009. It was a difficult time for us all. Even more so as there were no more family members to call on for support. My sister tragically passed away at just thirty years old in 1991 so there were times I wished there were other brothers or sisters to call on to help out. We found the endless treks to hospital to visit my Dad quite hard as he was there for eight months before he died. All this was on top of trying to get over the cancer treatment and prepare for whatever life lay ahead.

We, as a family, had settled into some sort of routine after our lives were turned upside down. We had been on some lovely holidays together, met some fantastic new people and were looking forward to planning more things. However, all that was about to change when a routine MRI scan brought up some unexpected results in April 2010.

Cathy

After Hywel’s skin had healed and he gradually recovered from all his treatment, his face changed from bright red to more of a sunburnt-brown skin shade and we tried to get on with our lives as normally as possible. We were invited to stay with my brother who lives in Malaysia and went there for a ten day holiday over the October half term and took Adam and Elliott out of school for a couple of days either side. It was hard going, Hywel had been really poorly and it was such a long way to travel. Hywel was really exhausted and the kids were a bit shell shocked still after witnessing all the treatment he had gone through. My brother didn’t have kids himself so wasn’t really sure what to do with us! We spent some time in Kuala Lumpur which was an amazing place, we all loved the Petronas towers and took loads of photos. 

Myself (Cathy), Elliott and Adam on the Sky Bridge, Petronas Towers.

Christmas came and went and in January 2008 Hywel tried to return to work. He struggled; his vocal chords were badly affected by his treatment, which meant not only was it hard to make himself heard, he also expelled so much air when speaking that he used as much energy to speak as you or I would to shout. He was exhausted and even reducing to part time work was too much for him and he was signed off by his Doctor in April 2008, retiring on ill health grounds in February 2009.

Hywel is an only child and both his parents were in their eighties when Hywel was diagnosed with cancer. They found it hard to accept that Hywel had cancer and weren’t really that aware of his treatment, as they were too frail to travel the ten miles from their house to ours. Hywel’s Dad had a nasty fall in October 2008. He was taken into hospital and didn’t come home again; he died in May 2009. Hywel’s Mum is also an only child and relied heavily on us for support. After Hywel’s Dad died we had to do everything for her as she had been sheltered by Hywel’s father all her life and could not cope with making decisions or managing her finances. It was an intense time with phone calls about the simplest of things three or four times a day and visits every other day to make sure she was eating and to offer reassurance. This gradually eased off after a few months as we tried to encourage her independence and she started to enjoy going out more and doing more for herself. She fell and broke her hip in December 2009 and lost a lot of mobility and the new found independence, so needs a fair bit of support from us still.

The Petronas Towers at night.

Financially things were quite tough for us as Hywel hadn’t been teaching very long so he didn’t have much of a pension. The small lump sum he was able to access was handy however. We had some advice from Tenovus, a Welsh cancer charity, about finances and they helped us to fill in all the paperwork needed to claim some government support. We rejigged a few things and managed fairly well.

Hywel found adjusting to being retired quite difficult, he told me he felt like he was on the scrap heap and very alone at times. He tried out a few different hobbies, and we bought a mad Cocker Spaniel called Freddie in August 2008! Freddie was good for Hywel, he got him out of the house pretty much every day. In January 2009 Tenovus asked Hywel if he would be prepared to share some of his experiences of cancer and what Tenovus had done to help him. Hywel’s photo was in the paper along with an article about him and during 2009 he was asked to talk on the radio in English and Welsh and we were also filmed for a news article about heating costs for cancer patients. Then in January 2010 Hywel was asked if he and I would be interested in taking part in a pilot project setting up a choir made up of cancer patients, people living with cancer and their carers, families, and friends in Pontypridd. Hywel had recieved some treatment to help strengthen his vocal chord, but wasn’t able to sing very well; we were assured it wouldn’t be a problem as the choir was more about getting people together and giving them something positive to do. The choir was a great success and when we went to the first practice we were told a BBC documentary was being made about setting up the choir. It was a very positive and exciting time for us, it gave us a reason to go out every Thursday and be part of a community again - Hywel having cancer had made us both feel quite isolated. The choir has performed at some fantastic events and we have met some amazing people through being involved. Hywel was also asked to speak at some of these events. He has been a real inspiration to others and has helped raise awareness about the work of Tenovus. I am incredibly proud of and full of admiration for him.