end of life care

Cancer: An Organised Person’s Worst Nightmare

~ Naomi ~ Leave a comment

It’s that time of year again when everyone seems to be planning something. Plans for summer, post-graduation, jobs and housing… plans of moving away, plans of coming back; talk about travel to far-flung and interesting places. Everyone is beginning to look towards the future, planning what they want to do, what’s achievable and in many cases, what they can afford. People are signing new rent contracts, starting new jobs or internships, and there’s a general buzz of change in the air.

Ever since Mum’s diagnosis, we have tried to keep life as normal as possible and on the whole, I think we’re doing a pretty good job. One thing that we constantly struggle with though, is planning. Despite what books and movies say, cancer is not linear or predictable, and Mum’s has often proven even less predictable than most. You can’t plot it on a graph, and doctors can’t tell you exactly how long you have left to live – at least that’s our experience of it. One week Mum can show no warning signs at all; the next week her immune system, weakened by chemo, might fail to stop a common cold resulting in a hospital admission for a week being pumped full of antibiotics.

A few weeks ago, Dad was trying to give our extended family numbers of how many of us would be able to attend the family holiday in late August. I’m easy – I have an almost full time summer job and it’s over the university resit period (I’m taking one of my exams then as I couldn’t catch up all the work in time after missing lectures when Mum was in hospital), so I can’t go. My youngest brother and Dad are going. My other brother has prioritised Christian camp over family, apparently. As for Mum… we don’t know whether she will be with us then. We don’t know if she will be fit to travel then (if she’s not then Dad won’t go either, nor will my brother). She might be absolutely fine and happy to join them all at that point. So there we go, anywhere between 0 and 3 of us might attend that week. Imagine how hard that is for financing and planning the holiday!

For me, the lack of ability to plan is one of the hardest things with this cancer situation. I’m someone who likes things to be organised and planned. I live by my diary, own a ‘to do’ list book and print timetables to plan other things. I have friends who are doing internships and travelling this summer and every week the careers people email me with #YouNeedWorkExperience stuff. I love my job and wouldn’t change it for the world, but I didn’t feel I had the option to get an internship this summer for fear that Mum would go into hospital and I’d have to let them down. I don’t feel able to book a trip away for a week in case Mum deteriorates and I’m not there. Everything that I’m planning has to have a back-up plan for if I have to head home.

My last year of university is coming up and people are beginning to think about jobs, masters degrees, grad schemes, you name it. I’m looking at the next year and thinking that I hope Mum doesn’t deteriorate around an important deadline. I hope I can get through third year without mitigating circumstances and that I can graduate at the same time as my friends. I’m thinking that once I have (hopefully) graduated, I need to get a job (or further study) somewhere around here because this is where my support system is and Mum’s either likely to be very poorly or not with us this time next year, so I’m going to need those people around me.

The worst bit of all of this is that I find myself wishing that it was all over. That I could just get back to ‘normal’ life and be able to move on. But then I remember that this only ends one way: Mum dies.

As hard as this is, at least Mum is still here. At least I can still ask her for advice when I’m stuck and give her a hug when I’m struggling. At least, for now, she’s still at the end of a phone or an email. At least my Mum is still here to help me through it.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/cancer-an-organised-persons-worst-nightmare_b_7690034.html

Carers Are Hidden Heroes

~ Naomi ~ Leave a comment

Carers Are Hidden Heroes

At the moment, there seem to be a lot of days and weeks dedicated to raising awareness of various issues (or celebrating donuts), encouraging people to share their stories and tag their friends. But how much awareness can be raised before it all fizzles into a blur of “share this”, “read that” and “use this obscure hashtag please”?

This week is carers week. I think it’s important to highlight this because carers are amazing. They are hidden heroes who care for loved ones day and night, often without a break or a holiday away from these responsibilities.

There are almost seven million carers in the UK of all ages, genders and ethnicities and that number is rising: at some point in their life, three in five people are likely to be a carer. Currently, about 700,000 of these carers are young people – children and teenagers who are caring for a parent, sibling or someone else every single day. Though many of these children wouldn’t wish to lose this responsibility entirely, because they love the person they’re caring for, it can mean that they lose aspects of their childhood; time that should be spent playing with friends or being a kid is spent instead shouldering more responsibility than any adult could reasonably ask of a child.

You can’t tell that someone is a carer by looking. They often go unnoticed, quietly getting on with things. Many might not even recognise themselves as carers, so their friends and family are almost certainly not going to pick up on it. Despite the lack of recognition, they carry on every single day; administering medication, completing personal care, cooking, washing, cleaning, and more. All of these things would cost a fortune if a care worker had to be employed to do them, but carers do them every day with no regular wage (apart from potentially some carer’s allowance). Unlike a paid worker, there’s no annual leave, no bank holidays, and no TOIL. Carers save our country huge amounts of money by simply loving and caring for a family member or friend.

My Dad is a carer – he cares for Mum. We’re lucky in that Mum is relatively independent at the moment, she can do most things herself. But she still needs help here and there, and that’s where Dad comes in. Sometimes I imagine Mum finds it difficult to accept this help, because she’s always been incredibly independent – imagine how frustrating it must be to realise that the simple things you’ve done yourself for your whole life, the smaller things you really take for granted, you now can’t do without help.

I wouldn’t class myself as a carer; I’m at university, so the only person I’m really looking after is me. I do worry about Mum, I keep in touch with everyone at home as best I can, and I’m forever waiting for the dreaded phone call, but I don’t have any regular caring responsibilities.

When I’m home I try to help where I can: walk behind Mum when she’s walking up the stairs, help her to reach things, cook and clean, other bits and bobs like that. But I don’t see it as an ‘extra’ or ‘caring’ responsibility; I see it as part of family life. I imagine many people who are carers feel the same and that is why they so often go unnoticed.

Keep your eyes open this week (and beyond). If you know someone who is a carer, or you think someone you know might be a carer, make contact with them. It’s hard to maintain friendships when your life revolves around medication charts and routine meal times. Invite them round for coffee, or go round to theirs. Ring them for a chat, drop them a Facebook message. Don’t go overboard by any means, just initiate contact. It doesn’t cost anything but will mean the world to someone who is tirelessly caring for someone they love.

Carers are incredible, they really are. They are hidden, hardworking and humble. Please try and notice them this week. Please reach out to them. If anyone deserves an hour of your time, it’s them.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/carers-week_b_7536544.html

Making Difficult Decisions

~ Naomi ~ Leave a comment

University is about more than just a degree. It’s about making friends, trying new things, and becoming independent. Personally, I love it. It’s given me a chance to escape from my teeny-tiny village (you can’t walk down the street without every man and his dog knowing about it the next day), and brought some fantastic opportunities. A major part of it for me has been about moving away from home. I’d taken a gap year prior to uni where I stayed at home working for various charities, and as much as I enjoyed it, I was looking forward to spreading my wings and having a chance to indulge in some self-discovery.

Despite some homesickness, I only went home a few times during the first term of my first year. By Christmas, I was more than ready for some TLC and a break from washing up but going into second term, I was determined to be more independent, go home less, and rely on my parents less. Then Mum was diagnosed, and that changed.

Half of me desperately wants to be a ‘normal’ student. To abandon my parents, make stupid mistakes and stay up too late most nights. I want to join my friends on nights out, spend weekends exploring the city and forget about my life back home.

The other half of me is different. At the time of diagnosis, Mum had somewhere between four weeks and four years to live (I know in movies they always have a definite length, but that’s not how it is in real life). My friends will probably have their parents waiting for them when they graduate. They can forget their Mum’s birthday, lob some flowers in their general direction a week later, and hope that makes up for it. If they get pregnant, they can reach for their Mum every time something freaks them out. Once their family has grown, they can visit with the grandchildren, using their parents as free babysitters (it’s cheeky, but it’s allowed, right?).

But for me it’s different. Mum probably won’t still be here when I graduate. She will probably die whilst I’m still at uni. I have to cram twenty or thirty years of visits into twenty or thirty days/weeks/months. I have to ask all my questions now; predict what I might want to know in years to come. Each birthday might be Mum’s last, so rather than forget it I want to make it special.

Should I continue to be as independent as possible and stay away from home, or should I return most weekends and spend time with my Mum? Should I spend my evenings binging on TV shows with my friends until 2am or making memories with my family? Will I regret not spending more time with Mum when she dies… or will I regret not spending more time at uni when I graduate?

There is no right or wrong answer to this. There isn’t a guidebook. There’s nobody to tell you what to do. Uni is different from school where you come home and see your Mum each night. It’s not like work where you’re home evenings and weekends (and even if you have your own house you can probably drive and visit your parents). University is an all-encompassing bubble and (for most) a once in a lifetime experience.

Every day I question my decisions and most nights I worry about whether I’m getting it ‘right’. Currently, I spend most of my time at uni, but speak to Mum on a regular basis. I go to her when I need advice or have a stupid question, and being able to do that is so wonderfully special. When I see her I cherish those moments and we take tonnes of photos.

Nothing is permanent in life and I’m lucky to have the chance to prepare for my Mum’s death where many don’t. That doesn’t make it any easier, but it’s something I have to be thankful for. Every day we all have to make decisions; some are bigger than others. I just hope I’m making the ‘right’ ones.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer-planning_b_7467058.html