Every cancer clubber is different.
Mine was a ‘stubborn bugger’, determined not to let cancer define him or hold him back, even when he started suffering from deficits. When I first met my husband, Matt, I had no idea he was living with a brain tumour he called ‘Tommy’. Living with his incurable cancer, he made adjustments and was able to lead a fulfilling life – so much so that someone who didn’t know him would never assume he was living with cancer. Gradually, Matt started suffering from deficits – fatigue, a weakness in his right side and grand mal epileptic seizures. I’m not sure when or how it happened, but by 2011 I had become as much a carer for Matt as his wife.
Increasing weakness down his right side meant Matt developed a limp, his foot dragging along behind him.
Coupled with his impaired balance, when he was out and about this unfortunately gave the impression he’d had a bit much to drink. Matt also developed aphasia, an inability to speak or comprehend. Initially he was just slow in replying to questions, but by 2013 he was struggling to find words and substituting random words. Someone speaking to Matt in the street could easily be forgiven for thinking he was intoxicated. Matt also suffered from epilepsy. Initially this was controlled by medication but over the years, despite increasing the medication, he started suffering from grand mal seizures. Passers-by would incorrectly assume that Matt was drunk and had fallen over if he had a seizure while he was out, especially if he was by himself.
Caring for my ‘stubborn bugger’ of a husband was a challenge but here’s what I’ve learnt.
1. Understand what’s important to the person living with cancer
Matt was very aware of what people thought of him, however his determination not to let cancer define him or stop him from living meant he would take our dog out for walks in the park. As he couldn’t move quickly and would have to rest on the way to and from the park, dog walks could take hours! On more than one occasion I had a call from the hospital saying Matt had had a fit while out on a walk. As Matt’s carer, I was emotionally conflicted. Should I stop him from going out? How could I stop him – I was out at work and he was home alone during the day. To stop him would take away his sense of purpose, his ability to live. While receiving those calls was heartbreaking, I learnt that living a normal life was important to Matt and who was I to deprive him of that? I did all I could to keep him safe, making sure he had emergency contact numbers stored on his phone and wore a medic alert bracelet. I also walked with him whenever possible.
2. Understand the difference between help and a person’s independence
Matt’s weak right side made it difficult for him to do the simplest tasks like getting dressed or holding a fork. Watching him struggle to put his arm in his sleeve, or struggle to cut food up, I’d reach out to help and he’d get annoyed. I couldn’t understand why he didn’t want me to help. I was helping him just as I would help anyone I saw struggling. Why struggle if you don’t have to? Years later I realised my “helping” was actually taking away his independence. I wish I’d understood this when Matt was alive and had taken the time to discuss the things he deemed important to maintain his independence and the things he was happy for me to help him with. Likewise, the person living with cancer has to understand the carer needs to feel useful, that they are doing something worthwhile and are taking care of their loved one as best as they can.
3. Make memories
Caring for someone with cancer, you become very conscious of optimising their quality of life. Once someone living with cancer needs a carer, their life is limited and time is precious. I tried to plan special days and things to look forward to, however, I quickly realised life with cancer doesn’t work like that. You never know how the person living with cancer is going to feel on any given day. The best thing to do is to live in the moment. Take each day as it comes and if it’s a good day, get out and make those memories. Celebrate anything and everything. Dance, sing and be silly. Cook your favourite meals, watch your favourite films, giggle at shared jokes. Enjoy the little things. You’ll never regret taking the time to just be with someone.
4. Advocate, build a relationship of trust with the medical team
As Matt’s carer, I was also his advocate. Aphasia meant Matt couldn’t express his thoughts and opinions, so I became his voice. Thankfully Matt’s medical team didn’t just treat him, they cared for him and understood that I was representing him. As Matt’s carer, I felt responsible for making sure Matt received the best care possible. Establishing and developing a relationship of trust with Matt’s care team was critical to my sanity. When I was worried about Matt, I knew I could send an update to his care team and they would either alleviate my fears or would schedule a scan or appointment for him.
5. Ask for help
As Matt’s deficits increased, caring for him became a full time job. However I was also working full time in a very busy, highly pressured role. As a carer, you have a right to request flexible working (if you’ve worked for your employer for 6 months). You’re also entitled to time off in emergencies, however it’s up to the employer whether or not they pay you for the time off. Unfortunately for me, my request for flexible working was not approved so I ended up taking leave to care for Matt. I had no idea what help was available and it was only after Matt was hospitalised with a reaction to his chemotherapy that I was made aware of a local hospice, Katherine House Hospice, and the palliative care they offered. Palliative care is all about maintaining a quality of life. You can’t do this alone.
If you are caring for someone living with cancer and your caring role is turning into a full time job, investigate what resources are available to you locally and don’t be afraid to ask for help.
You need to be registered and on their books so when you need the help (commodes, mechanical beds) you’re not wasting time registering details.
My heart goes out to anyone caring for a loved one.
It’s a tough role and sadly one that’s not acknowledged or supported as much as it could and should be. My hope is that by sharing my experiences and lessons learnt I may help ease the burden of fellow carers. Please, take the time to look after yourself before you look after your loved one. Caring for someone else starts with self-care.
You may like to add some of my ‘daily tonic’ to your daily routine – this one works for me, but feel free to substitute ingredients to suit your needs!
Daily tonic for cancer carers
- Brew a full pot of fresh coffee – steep with happy memories
- Leave to rest for 20 mins
- Add fresh air and a sprinkle of sunshine
- Walk and allow to breathe
- Add respite from cares
- Pour a relaxing bath, add a dash of fragrance, a glass of wine, a good book and marinate until pink
- Combine well with friendship, mixing it all together with humour and patience until spirits have risen
- Adjust timings & ingredients to suit
- Serve with love