A friend got in touch recently. She had a friend whose child had been diagnosed with cancer, and was hospital. She desperately wanted to help, genuinely help. She asked me what she should do, what had I found helpful when I was in that position. I was so touched by her question. It’s easy to ask say ‘let me know if I can do anything’ or say that you don’t know what to do for the best but it takes effort and thought to find out.
I relied so much on the people around me during that time. It seems like a lifetime ago now, and also about 5 minutes. There was the initial shock of diagnosis, which led to an emergency hospital stay of about two weeks, followed by 5 months of endless hospital appointments and worry. Finally, a protracted, traumatic 4 month hospital stay, which ended in Fred’s death. That would have been stressful enough, but in the middle of a global pandemic when the world was on fire, it was complicated.
I’ve learned a lot about asking for help, accepting help, and the ways people will find to show kindness and compassion. It’s impossible to list all the ways people came to our rescue, but I thought it might be helpful to share them, just so you can cut it out and keep it on the fridge, should a crisis every arise.
The hospital gift guide
I quickly developed a hospital bag that contained everything I needed. I would return home about every 2 or 3 days and I travelled light (my husband would disagree but let’s pretend he doesn’t). A lot of the things in that bag were not things I owned before then, but became my life savers.
First of all, a power bank. A good one, not one of those lipstick ones. A friend sent me this after my phone ran out of battery when I tried to phone her from the parents room at 3 in the morning. There are lots of plug sockets in hospital rooms but they are mainly around the bed and you feel guilty reaching over the obs machine to charge your phone.
Another friend sent a thermal ceramic cup with a lid. There’s not much to do in hospital except make tea, and you have to have a cup with a lid when walking around corridors. Never mind climate change, there is nothing more depressing or soul destroying than drinking tea out of polystyrene cups. This always makes me smile because my Mum would refuse to drink out of plastic cups, she would have gone thirsty rather than accept one. I was very grateful I could keep to her standards even in times of crisis. Chilly bottles to keep things cold are also a godsend when it’s a long walk to the fridge.
Food. Hospital food is terrible, the canteen is miles away and it’s really boring. What’s more, you becoming incapable of making the simplest decisions like what you want for lunch. Our friends filled our freezer, turned up on the doorstep with Tupperware, baked cakes. I was particularly grateful to the friend who left home made soup and bread on the doorstep. People sent food parcels to hospital, along with food vouchers and Costa Coffee cards. We’ll skip over the cakes sent to the ward which accidentally ended up in the nurses’ break room. I was so furious, after chasing them down from the post room. My husband had to take me to one side and remind me that these people were keeping my child alive so it probably wasn’t fair to begrudge them a bit of cake. BUT IT WAS MY CAKE. I think I’m over it (totally not over it).
Amazon vouchers. It sounds boring and unimaginative, but honestly so useful. There were so many things that we needed that we were able to get delivered straight to the hospital. I was able to get books on my kindle, just random things that we suddenly needed two of, or that we didn’t have at home. Never underestimate the value of cold hard cash. I had to stop work overnight and money was tight. I think that’s probably the hardest thing to ask for, but we were lucky enough to have friends who stepped in without being asked.
Smells. Almost immediately, I became acutely aware of my other senses, I don’t know whether it was connected to anxiety, or trauma or a combination of the two, but I needed lovely things. Smell became very important to me, I had room sprays, pillow sprays, pulse point roller balls and I would cling to them. Somehow if I could smell something lovely, it would divert attention away from all the horror, and ground me a little. The frequent hand washing meant that I got through hand cream like never before.
I also craved soft things. I bought new clothes that were comfortable, some of them fur lined. Someone sent me really nice socks. My most precious gift was a golden blanket given to me, which I slept with in hospital for months, so I could avoid the thousand time wash blue standard issue blankets. It was a small piece of comfort in an otherwise hideous world and later Fred was buried with it.
It really is the thought that counts. The basket left on my doorstep full of little things to make things better – chocolate, vitamin tablets, a little craft thing, made me cry. It means a lot to know that you haven’t been forgotten, even though you are never there and don’t have time to speak to anyone.
There were so many things that people did for us, that we just weren’t capable of doing ourselves, either physically or emotionally. I remember looking out of the window and seeing one of our friends mowing our front lawn, he’d even brought his own mower! Another friend not only arranged for a cleaner to come once a week but also snuck in and tidied our entire garden which had been sadly neglected after a summer of hospital visits. People fed us, did our washing, fixed things.
We were incredibly lucky to be surrounded by people who loved us and caught us. There are so many things, far too many to list.
All of these things don’t even include the emotional support we were given, that will have to wait for another day.
Thank you for sharing your experiences. My son passed away on May 10th,2021. He had Cystic Fibrosis and had received a double lung transplant in 2016, epilepsy and diabetes, none of which have been the cause of his very sudden and traumatic passing – his heart just stopped beating for no apparent reason!
After a childhood of hospitals, clinics, medications, sleepless nights and stress, I can fully take everything that you have said here. Oh, the value of a travel cup and a meal that has flavour 🍴
Much love to you x