When I was first diagnosed, what came as a big shock to me, was that I would be spending most of my life in hospital. What I had in my head was that I would leave hospital after a week after all the check-ups and tests. After that I then expected to be having chemotherapy every week or so as an outpatient. It was unheard of, to me, that people stayed in hospital for such a long time, unless because of serious injuries or intense surgery. Turns out with a leukaemia diagnosis, the treatment is so strong it completely kills off your immune system and you have to stay in protective isolation for months at a time due to being severely neutropenic. Neutropenia is the condition when your immune system goes below 1.5, and below 0.5 is severely neutropenic. At this point you have to stay/ live in hospital, generally not even leaving the ward simply to avoid risk of infections. An infection as a severely neutropenic patient can be very serious due to having no immune system to fight off an infection and, in some cases, can lead to neutropenic sepsis.
My first stay in hospital was two months, I then had two weeks at home as a break and then I was back in again, for a month. It is a very surreal experience being isolated from the world for so long. Sometimes I found it okay and others found it very difficult. As you can imagine after the first two months in hospital, I was so desperate to get out. I felt so detached from real life it really started to get to me towards the end. My treatment the first time wasn’t as intense, so I generally felt well and kept busy however this didn’t help me mentally as I all I wanted to do was leave and live normally.
There are so many things I could rant on about when living in hospital such as; being woken up for bloods every morning at 6am, constantly listening to other patients’ conversations on the ward (as all there is dividing you is a curtain), the complete lack of privacy and people coming in at all hours cleaning, changing bedsheets and all sorts. Everyone is just doing their job and I feel bad complaining about the staff, as everyone does such an amazing job ensuring your care and wellbeing is the best it can be, however after 8 weeks of constant disruptions and no quiet it really, really grinds on you.
There are so many things I could rant on about when living in hospital such as; being woken up for bloods every morning at 6am, constantly listening to other patients’ conversations on the ward (as all there is dividing you is a curtain), the complete lack of privacy and people coming in at all hours cleaning, changing bedsheets and all sorts. Everyone is just doing their job and I feel bad complaining about the staff, as everyone does such an amazing job ensuring your care and wellbeing is the best it can be, however after 8 weeks of constant disruptions and no quiet it really, really grinds on you.
Having said this, the ward I am in, is amazing. Because of my age, I am in teenage and young adult (TYA) ward. Its great with a day room with seating areas and pool table and has a small chill room where I would often go to do yoga and get some peace and quiet. One of the best things about it, is there are kitchen facilities; a potato oven and a microwave. Doesn’t sound much, however I was very persistent to cook normal meals and managed to learn how to cook so much just using these simple facilities. It was quite fun as I really enjoy cooking anyway and it allowed me to eat really well and avoid the dreaded hospital food. I even ended up baking in the potato oven and made a few cakes in my time there.
There are also people who work for teenage cancer trust on the ward everyday too. They are amazing just to have people to talk to however they also provide so much stuff to do. There is a cupboard full of crafts, so I ended up making quite a lot of cute things and did lots of pottery painting too. When it started to come near Christmas, in my second stay in hospital, I was isolated to my room, however someone from TCT brought me loads of things to make Christmas cards and baubles with and was actually so fun and I ended spending about a week making card after card.
Things that really helped me get through living in hospital for so long were:
-Having friends and family visit often. People to talk to about normal life really helps me and gives a tiny escape from having to think about all things clinical for a while.
-Keeping busy. Planning lots of activities to do each week and planning out each day helps bring some sort of routine into your days. I found I got way more stressed when I wasn’t doing anything than when I had activities to do.
-Having a clear routine. I spent time getting ready in the morning after breakfast and then at night I had a set night time routine. It helped me wake up for the day then wind down at night for a better sleep. I had set skincare routines in these times too which just helped relax me before going to be and refreshed me when waking up.
-Trying to do some exercise. Now when I say exercise I obviously don’t mean half marathons, however things like stretching and yoga are easy to do, gentle enough for when you’re not feeling great and don’t need much space. I found it really made me feel better from when the majority of the time your sat in bed or the farthest you walk is 10m to the day room.
-Meditation. A few months prior to my diagnosis I started to really get into yoga and meditation and was so grateful for the knowledge I gained that I could carry through into my treatment. In my first time in hospital partly due to steroids and partly due to the abnormality of being trapped on the 5th floor of a hospital wing, I struggled with anxiety quite a lot. On bad days, mediating changed the way I felt so much and relaxed me to a point I could manage. Learning how to focus on the breath also helped during painful and stressful tests and procedures like the bone marrow biopsy or MRI scans. Trekstock (a great charity helping people in their 20’s and 30’s with cancer) offers a year’s free subscription to Headspace when you sign up to the welcome pack.
-Having a clear routine. I spent time getting ready in the morning after breakfast and then at night I had a set night time routine. It helped me wake up for the day then wind down at night for a better sleep. I had set skincare routines in these times too which just helped relax me before going to be and refreshed me when waking up.
-Trying to do some exercise. Now when I say exercise I obviously don’t mean half marathons, however things like stretching and yoga are easy to do, gentle enough for when you’re not feeling great and don’t need much space. I found it really made me feel better from when the majority of the time your sat in bed or the farthest you walk is 10m to the day room.
-Meditation. A few months prior to my diagnosis I started to really get into yoga and meditation and was so grateful for the knowledge I gained that I could carry through into my treatment. In my first time in hospital partly due to steroids and partly due to the abnormality of being trapped on the 5th floor of a hospital wing, I struggled with anxiety quite a lot. On bad days, mediating changed the way I felt so much and relaxed me to a point I could manage. Learning how to focus on the breath also helped during painful and stressful tests and procedures like the bone marrow biopsy or MRI scans. Trekstock (a great charity helping people in their 20’s and 30’s with cancer) offers a year’s free subscription to Headspace when you sign up to the welcome pack.