Carer, caregiver, support person … when someone you love has head and neck cancer, it affects you too.
Research has shown that looking after the carer improves the outcome for the patient. Some patients say it is harder to be the onlooker than to be the one suffering the disease.
Interestingly, the famous Swallows book is for "Patients, carers and family members". You can’t live in a house with someone who is getting over rigorous treatments or coping with a peg or laryngectomy stoma without becoming an essential part of the survivorship process.
Here are some quotations from our group and the Swallows book about this role, with some input form the “carees”
- Carers should also have time for themselves. Doing it alone is hard but I just did the essential things. I ate well and rested. I did other jobs when I felt able too.
- My role as a carer was to be the strength my husband could not. I set him little goals that he had to achieve each day- starting small but gradually working up to bigger challenges
- My partner was crucial in my recovery. There for me 24 /7. A bonus for him is that our daughters were a big support to him and their relationships with him have been strengthened by my illness.
- The carer should also heed the wishes of the person undergoing treatment. It is about them after all.
- The caree has a lot to cope with and every right to feel a little depressed and down on the world. So does the carer, but both have to make an effort to be positive, cheerful and `up’ about life.
- Letting good friends look after YOU is terribly important
- A highlight of my last cancer treatment was having my son stay with me for the six most important weeks. I don't see him much (UK) so it was a consolation prize.
- Above all , it is so important to care for yourself. Take time out for yourself. A walk with a good friend to vent to is perfect. As is a coffee or movie with friends.
- I have never considered nursing skills as one of my strengths but again, as a carer, you can adapt to many things.
- Please, carers, don't stop the patient from doing physical work like mowing the lawn if they are capable of it.
- It is important to keep records. Have a notebook for all appointments and times. Try and take notes during appointments, or write down important points immediately after the appointment.
- My supporters were my rock when I was all at sea.
- Your kids are in this too.