Hurt, Scared, Sad.

When I was younger, if I was hurting, my Mum or Dad would kiss it until it was better.

If I was scared, they would tell me why it wasn’t scary and leave a light on because it would stop things from feeling so terrifying. At nighttime I would hear The Archers theme tune play from their room as I fell asleep.

If I was sad they would wrap me up in their arms. I might cry and shake but they would hug me until the world settled, or until I was too exhausted to be upset any longer.
As I got a bit older, I learned that Mum and Dad couldn’t fix everything that hurt. But they could be there to listen when things went wrong, to be ranted at, to console, to hug and to hold.

If I was scared we’d talk it over, we’d work it out, we’d make it not feel so scary any more.

If I was sad I’d go to Mum and when she hugged me things would somehow seem better.
Late into my teens and life had changed a lot. I knew Mum and Dad couldn’t fix everything that hurt. But they could still stroke my hair. I could still lie on Mum’s stomach and she could tell me things would work out. We could watch something funny together and eat some chocolate and the world would seem brighter.

If I was scared at night, even at 17, I would go into their bedroom and crawl into their bed. Sometimes Dad stayed and sometimes he’d leave, but I’d sleep next to Mum until morning.

Some mornings I’d feel so sad that facing the day felt too hard and Mum would come in, give me a hug and lay my clothes out for me. She’d go downstairs and make me a bowl of cornflakes with chopped up nuts while I got dressed. She’d help me go from sad to school-ready in the space of forty minutes. A hug and a ‘see you tonight’ giving me the strength to face anything that life threw at me.
Tonight I’m sad, I’m scared and I’m hurting. I can’t crawl into Mum and Dad’s bed because that bed no longer exists. Mum’s hospital bed resides in the lounge alongside Dad’s tower of mattresses. Her hugs no longer hold the strength they once did. Nobody can tell me it will be okay because it won’t be. We will develop a new okay, in time, but we will never go back to the okay I’ve known all my life. Nights aren’t as scary as they once were, but have become long and lonely. I listen to Radio 4 short stories until I become exhausted enough to sleep. Mum can’t make me breakfast – it’s my turn now to get her food and drink when she needs it, and I like doing that. It feels right, and at least I can do something. I tried watching something funny tonight, but a cancer thing came on in the middle and made me cry. I tried eating chocolate but it doesn’t taste right and I’m not hungry at all. I sit, wrapped in a blanket which feels like a hug, stuck to my chair. If I don’t move for a while then time stands still and I can just about breathe. It’s okay, it’s okay, it’s okay.


Mum is Very Poorly Now

Mum is very poorly now. I went home today and she’s much like she was in February the day before she went into a coma. At that point we thought she only had hours to live, but it’s been six months since then. Looking back on it, we think it was chemo that caused the sudden dip. This time, there seems to be no obvious, reversible cause, just disease progression. Mum’s bloods are all way out. She’s very sleepy and largely immobile, but thankfully not in any pain.

It’s been a weird weekend – I slept from Friday night until Sunday morning (a mixture of illness and exhaustion I think), then went home for the majority of today. Mum has deteriorated so quickly since I last saw her a week or so ago. It’s not particularly distressing, just very sad. On the plus side, I did manage to find out which Christmas cake we make, which Christmas cake we make for my granddad, and where the list of people we buy presents for it. I even found out which mincemeat recipe we use and I don’t even like mincemeat.

I don’t know what you’re supposed to asked your Mum when you might not be able to ask her something tomorrow, or the day after. I don’t know what you’re supposed to say. I know that even when she’s asleep she likes hearing us around her talking and laughing. I know that she can still show a bit of a smile. I know that she still likes weak juice through a straw. I know that she’s still warm enough to hold. I know that she still cares about us and loves us deeply.

This week I’m going to try and manage uni alongside going home most nights. Attempting to maintain some normality in an abnormal situation. I don’t know how it’s going to go… we’ll see.

I don’t really know what else there is to say. I guess death is all a part of life. I’m going to try and sleep before I have to face tomorrow.

Ten Tips For Surviving Uni When Someone You Love Is Dying

Packing up your bedroom and going to uni is exciting and scary whether you’re going into your first year, or subsequent years. Packing up and heading off to uni and leaving behind a parent (or other family member) who is dying brings a whole host of new challenges and worries.

My brother and I have put our heads together to try to come up with some top tips for being at uni while a loved one is dying. We’re not experts on the subject, but we have a few ideas after going through it ourselves.

I learned of Mum’s terminal diagnosis midway through my first year, my brother learned of it during his final year of school and attended a different university from me for his first year, last year. Our advice won’t suit everyone and some things will vary between universities, but we hope that these tips give you a few ideas, make you feel less alone, and put your mind at rest a little.

  1. Let the relevant people know about your situation as soon as you can. This may include pastoral care networks, college/welfare/halls tutors, those in charge of mitigating circumstances, and your academic tutor. This way, if a situation arises where you need to use these resources, it will be much easier to access the support you need, and don’t be afraid of asking for help when you do need it.
  2. Apply for mitigating circumstances if you need them. Nobody will shout at you if you end up handing a piece of work in late because your loved one was in hospital – but you need to let them know why that piece of work is in late, rather than having them assume that you’re just a ‘typical student’.
  3. Find a friend or a neighbour and let them know what’s going on. Sometimes you may need someone to help you look out for your wellbeing. It might be that they pop in every now and again and make sure you’re eating and sleeping, or make sure you engage with the more social aspects of uni from time to time if that becomes a struggle for you. Even regular Nandos visits with certain friends can be a real lifesaver – sometimes it’s important to have things to look forward to.
  4. Go to your lectures. Sometimes your mind will be full and the last thing you’ll want to do is go to a lecture. Go anyway and try to take some notes. Your mind might not be with it in that moment, but later when you come back to the work it’s better to have some rubbish notes than no notes at all.
  5. Stay in touch with your family if you can. It might be through emails, letters, phone calls, or carrier pigeon. Dad used to write me weekly letters about family life and a bit about Mum. Nowadays we mainly communicate online or by text.
  6. Find your local carers centre. See if they have a young adult carers (YAC) group. Even if they don’t have a specific YAC group, see if the carers centre can help you out. They can often provide a chance to chat with others facing similar issues and it can be really helpful.
  7. Don’t be afraid to go home. Lots of people may tell you not to go home during the first term (or at least half term) of uni, but it’s okay to want to: Your loved ones condition can change, and you may well want to spend more time with them if you can. I know I certainly had to find a balance between the fierce desire to get away from home as fast as possible with wanting to spend time with Mum while I still could It’s not an easy balance, it takes time to work it out, and it often needs reassessing, but that’s okay.
  8. Have fun! Just because somebody at home is dying, it doesn’t mean you can’t go out, it doesn’t mean you can’t drink, it doesn’t mean you can’t join a sports team, get stuck into societies or become a volunteering whizz. Make the most of uni while you’re there, it passes faster than you’d think.
  9. Don’t struggle on alone. If your grades are dropping because you’re too upset to leave your room and go to lectures, tell someone. If you’re missing deadlines due to spending time in hospital, tell someone. If you’re beginning to feel that you can’t cope, let someone know, because there are options and there are things that can be done.
  10. Look for help online. If you’re struggling with offline help, try looking for some online support. Hope Support Services offer online counselling for those who have a terminal illness in the family. Carers UK have lots of information on their site, and Marie Curie have lots of information as well as a helpline you can call. There are loads of resources out there even if they can take some digging to find. Lots of services will be local to you, so have a quick google.

Unfortunately, we can’t give you a step-by-step guide for being at uni while someone you love is ill. Every person, every diagnosis, every uni and every course is different, so we wouldn’t even know where to begin. Enjoy uni: make mistakes, stay up too late, meet new people, discover the city, perhaps even do some work(?!)…who knows that the next year might bring. The most important thing to remember is that there is no ‘right’ way to cope with terminal illness; you need to work out what’s right for you. Stay strong, and best of luck.