Negotiating the Cancer Maze

It's never going to be something that you expect. Old, young, middle age, a tiny child, mother, father, sister, brother, aunty, uncle, grandpa, grandma, neice, nephew, friend... we are all in it together because it's an unfair happenstance of life. The moment you hear the news differs for everybody. We are all unique and how we react to the news can have an insight into how we respond to the treatment psychologically. I personally had the mindset of "Right, just tell me everything I need to do from now to get past this," while trying to choke back a sob at the unexpected nature of being told it's worse than we thought. Over the past nine months of dealing with two lymphomas — Non-Hodgkin's and Hodgkin's — at 23 I have mentally collected tidbits of information, knowledge and advice because that's how I naturally handle challenges, so I would like to share these with others who find themselves in this situation and swimming in what often feels like a bottomless pool.

1. "I was going to buy a book on hair loss, but the pages kept falling out." –Jay London

Try and face the reality that you might lose your hair, all over your body. We all know that's a well known side effect of chemotherapy, but it's rather different in reality to how we think. I personally ignored it when I noticed my hair was falling out until it began to hurt. It doesn't necessarily "fall out," you can just be brushing your hand through your hair and suddenly you have a hairy palm. It would be useful to invest in a plug-hole cover for when it really starts to come out in order to catch them because there are definitely more strands than you think. Now might be the time to experiment with a short haircut if you've always wanted to, although it may not last for long. In most cases of treatment-induced hair loss, hair does grow back, sometimes different than how it was before. It can be a wildly different texture or a subtly different colour. When it does start to reappear you will treasure each stage of growth like it is the best thing since sliced bread.

In the meantime, in the UK you can have a wig on prescription if you choose to; as an inpatient, they are free and if you are luckily out of hospital they provide them at a low cost. I'm not certain on the cost in other countries but I do know they range in price with the real hair wigs being the most costly. There is a rainbow of choice for headwear. There are headscarves, beanie hats, cloche hats, ski hats and caps, bandanas, or you can go completely brave and bald. The main thing to remember here is whatever you wear you can wear it with pride and dignity with your head lifted high because your experience is your own and no one elses. No one else has the right to tell you what to wear on your own head. The only catch with this is unless it's for medical reasons — chemotherapy can make you sensitive to the sun and cold and you want to keep as healthy as you can in between treatments. You look beautiful just as you were born to be.

2. "Charity should begin at home, but should not stay there." – Philip Brooks

If someone offers you help, do not be afraid to accept it. You are not weak. You are not being lazy. Sometimes having an illness means you just can't do something and that is absolutely fine. You will have time to repay favours and offers if you choose to but the majority of people offering you help don't want anything in return but to put a smile on your face.

There are just times in life when we need those around us to pick up the slack when our grip on the rope is loosening. An example of this other than cancer, if that helps, is when we have newborn babies. It is a time when friends and family tend to rally round and do what they can and often times like these are when we find out who truly cares for us and this can come from the most unexpected places.

There are many ways people can help: cooking meals, doing washing and drying, household chores, transport, and a listening ear. If you need food preparing as you won't be up to cooking, then ask and see what the response is. When I was first diagnosed my husband and I were blessed so generously from members of our church with frozen meals they had cooked, even following my dietary requirements. This kept us going for a time when I was not up to cooking and when my husband needed something quick he could cook in between coming home from work and seeing me in hospital. Friends offered to take some of our clothes to wash and dry and often they would come back smelling gorgeous and ironed, which is more than I manage to do on a good day.

3. "A problem shared is a problem halved"

Don't beat yourself up if you can't do something or your day is just not going right. Don't let others make you feel bad for having rough days. You're going through a traumatic time whether you are dealing with it well or not and sometimes this doesn't come to fruition until months or years after the fact. Some days you might want to hide in bed and not talk to anyone but other days you look at the challenge put before you and put on your armour and get moving and it's in these days that you overcome mental hurdles. Look for the mini victories, they will keep you sane. Yesterday you were in bed in your pajamas but you were awake, today you sat up and cleaned your face or put some deodorant on, tomorrow you will have a shower. These are all accomplishments. It may be beneficial for you to set challenges for yourself or keep a to-do list of realistic targets.

4. "I called my lawyer and said, ‘Can I ask you two questions?’ He said, ‘What’s the second question?'"

Ask all of the questions that pop into your head. None of them are too silly to ask. Some people like to know as little as possible about their cancer and treatment but I've found it beneficial to be active in my treatment. If you're worried about a certain side effect, as them how they would treat it should it occur. If you are concerned that a doctor or nurse has not washed their hands before treating you, you can ask them. If you are scared of having a procedure, ask about sedation options. If you remember something at 3:30 AM in the morning that you wanted to know write it down because chances are you won't remember in the morning. Make a list of all the questions you think of and bring them with you to hospital appointments.

You have the right to have your treatment be in your best interests and the best they can do for you. A good physician will listen to your thoughts on the situation and respond accordingly taking it into account.

5. "I try not to break the rules but merely to test their elasticity." – Bill Veeck

Tell your consultant/doctor/nurse every side effect you notice even if you think it's nothing or too small to bother with. Your team need to know how you are responding to the treatment for multiple reasons. There are no hard and fast rules of how a patient will respond to chemotherapy or immunotherapy drugs; every body is individual and will respond differently to another. They can tell you the side effects that most people have during treatment and have to tell you side effects that have been reported but it doesn't mean you will get them. I read through the information on all three of my chemotherapy regimes and have only had a few of the listed side effects so far. Don't panic when you read them or are told them, but listen to your body as the treatment commences.

6. "When you get to the end of your rope tie a knot and hang on." Unknown

Don't forget those around you are affected too. If you have a partner their world has been shaken up too and they may feel down about the situation. It's only natural — they may need to be encouraged to talk to someone be that a professional or a good friend as it's difficult to juggle being a patient with being yourself and a counselor too. I have heard of sufferers who belittle their partners when they have a cold because "it isn't as bad as cancer." There is an element of truth in this but it doesn't mean their suffering is any less important. In fact, it may to some people be helpful to be the caregiver when their partners are low or ill as it gives them something concrete to do and a purpose — this can't be said for everybody, of course. Just try to be gentle with those you love as they have their own burdens and show them you still love them. For many family members or partners juggling too many plates can unfortunately lead to some being dropped.

7. "Remember sadness is always temporary. This, too, shall pass." – Chuck T. Falcon

Your mental well-being is the most important thing during your treatment. You have the physical aspect being handled by professionals but it may be worth keeping an eye on the mental aspect of life with cancer. If you start to feel very low, depressed, low on energy, and have suicidal thoughts, I can't stress enough how important it is to seek help. This help could be from anybody — your mum, dad, family members, close friends, nurses or doctors: anybody you trust. Life is beautiful and wondrous but sometimes it can be clouded with darkness and you need a helping hand to step over the bridge to the light again. Try to live your life as normal as you possibly can but it may not be the same as you would like it to be. Living with a cancer diagnosis most of the time means learning to live with "the new normal" and accepting that there will be changes, some reversible and some irreversible. It is a situation to be taken seriously, though this doesn't mean your life has to be serious. Take comfort in the things you enjoy and give you pleasure, laugh when you want to, do what you are able to do, and don't give up hope or let your identity slip away from you. You are more than your cancer.