Becoming a chemo mum has a huge impact on your life. Not least because you spend vast quantities of time worrying about all your children. When I’m not worried about the health and well-being of the Dinosaur, I’m worried about the Unicorn and the impact all of this is having on her. On a day-to-day basis, the life of a chemo mum will typically be taken up with the following.
I normally get up around 6 am so that I can get myself washed, dressed, and ready for the day. I don’t bother with makeup unless it is a really special occasion. I wake the children up at around 6:30 am if they are not up already. The Unicorn doesn’t need to get up this early but she likes to say goodbye to Daddy Dino before he heads off to work.
When we get downstairs the work starts straight away. I let the dog out in the garden to do her business, change the water in her bowl and put some food in her other bowl. Next, I help the Dinosaur to dress his top half in his school uniform then I go and prepare his medicines and breakfast. Each morning he has anti-sickness medication and most mornings he will also have a laxative, at the weekends he also has antibiotics. His feeding plan states that he should be offered food and then he should have an NG feed if he doesn’t eat. Most mornings he won’t eat any food so I prepare a tube feed for him. This takes an hour and a half to run through which is why we get up so early. Once his NG feed has started, I help him dress his bottom half and he settles down to watch tv or play.
Once the Dinosaur is all sorted, I prepare breakfast for the Unicorn who has been getting herself dressed while I have been sorting out the Dinosaur. While she is eating her breakfast I go back to the kitchen and make myself a cup of tea, empty or load the dishwasher depending on how organised I’ve been the night before, put a load in the washing machine and prepare packed lunches for the children if they are not having a school dinner. The Dinosaur is entitled to UIFSM (Universal Infant Free School Meals) but as he has such a limited range of foods that he’ll eat, I tend to make him up a lunchbox of picky things and snacks to try and tempt him to eat if he doesn’t like the sound of the school menu. The Unicorn likes to have a lunchbox most days unless it is one of her favourite things on the school menu.
Once the lunchboxes are done I get the bags ready, the Unicorn does hers by herself and I just remind her if there is something in particular that she needs. The Dinosaur on the other hand has to take quite a few items to school with him, some of which are standard for his class and some are because of his needs. Each day he takes a water bottle although he very rarely drinks from it, a snack for break time, his book bag, a thermos of cooled boiled water to flush his NG tube after a feed, a beaker in a food bag to pour the water into so that it can be sucked into the syringe, a 60ml syringe to flush his NG tube, a 20ml syringe to check the PH level in his tube to make sure it is correctly placed, PH strips for checking the level, a giving set to deliver the feed (the tubing that comes from the feed bottle and attaches to the end of the tube that comes out of his nose), a bottle of feed, his feed pump, a stand for his feed pump, a backpack to hold his feeding set up, a lunchbox if he doesn’t want to try anything on the school menu and finally his coat.
Once both children are at school you’d think I’d have time to relax, put my feet up and have a cuppa. Sadly, that’s not true. My days are filled with household chores like laundry, shopping, and cooking as well as many, many phone calls and forms all to do with the Dinosaur. There are forms for things like DLA, a Blue Badge, an EHCP, support from charities, and other benefits that we are entitled to. Then there are the phone calls, emails, and text messages, these are relentless. When you become a chemo mum, nobody warns you that you are going to become a full-time administrator as well as becoming a carer. The calls, emails, and texts cover:
- appointment booking for weekly blood tests, monthly clinic visits, and 3 monthly lumbar punctures
- results of blood tests
- discussions with the dietician about how his feeding plan is working
- placing orders for prescriptions from the hospital for chemo and medicines to counteract the side effects
- placing orders for prescriptions from the GP for barrier creams, tapes and adhesive remover wipes for the NG tube
- placing orders for the milk for the NG feeds as well as the sundries required such as syringes, PH strips, tubing to deliver the feed, bottles to decant into if we can only get the small bottles of milk
- chasing up missing or delayed items because of supply chain issues – this is a huge problem and so far has affected the following items for us: milk for NG feeds, omeprazole to prevent stomach ulcers, adhesive remover wipes for tape changes, and methotrexate chemotherapy drug. I ordered some adhesive remover wipes in June, it’s now October and I have STILL not received that delivery. My takeaway from that is DO NOT USE LLOYDS DIRECT PHARMACY!
- emails from various charities with events that are coming up
- emails from the nursing team with information to do with the ward and home visits
- emails to the nursing team to let them know of planned trips, this is so that they can arrange open access for us at local hospitals when we go away
- researching ways to help him such as podiatry, physiotherapy or theraplay to help him with the trauma of medical procedures
Aside from all of the chemo mum duties, I’m working on my blog, hosting co-working sessions, running my business, and doing all the household tasks such as laundry, shopping, home admin, life admin, and housework.
After school is usually quite fraught, 2 days a week the Unicorn stays behind for after-school clubs so that means 2 different pickup times. On top of that, she has swimming once a week and Brownies once a week plus the Dinosaur has Squirrels once a week as well. Then there are things like homework, school letters, and doing dinners for everyone as well as the evening medications for the Dinosaur.
In the evening, the Dinosaur has another laxative, more anti-sickness, antacids to prevent stomach and mouth ulcers, chemotherapy (2 different ones a Tuesday IF he hasn’t had a lumbar puncture that day) and at weekends he also has antibiotics. If he hasn’t eaten dinner then he has a tube feed as well.
Once we have finally waded through all of the evening activities, it’s time for bed. It always seems to take an eternity to get both children into their pyjamas with their teeth brushed and then get them into bed. On the face of it, this seems like a relatively simple and straightforward task but some nights I don’t get back downstairs until about 9 pm meaning I’ve been busy and on the go for 15 hours.
I’ll quite often stay up after everyone else has gone to bed just so that I can get some alone time to watch what I want on tv without being interrupted. All in all, being a chemo mum is exhausting in ways I could never have envisaged prior to diagnosis.