In February 2022, the Dinosaur was diagnosed with Acute Lymphoblastic Leukaemia (read more here). Even in those first few days, it became apparent extremely quickly that this would cost a lot. I’m so thankful that we have the NHS because we don’t have to pay for any of the treatment which is a huge relief, I just don’t understand how people cope with a cancer diagnosis in countries that don’t have the healthcare system that we in the UK have. Initially, the costs of cancer were obvious things like fuel to get to and from the hospital and parking charges when we were there, this was increased dramatically when he was transferred to Bristol which meant we had city centre parking to contend with as well as a 30-mile journey each way. Before cancer hit our family it simply hadn’t occurred to me how much we would need to spend on a whole host of other items. Here are just a few of the costs of cancer that we have encountered in our first couple of months.
One of the first and most obvious costs of cancer is transport to the hospital. Initially, the Dinosaur was in Gloucester Royal Hospital which is 20 miles from our house. For the first weekend, Daddy Dino and I spent most of our time there but we did swap to make sure that there was someone with the Unicorn. On Sunday 6th February, the Dinosaur was transferred to Bristol Hospital for Children which is 40 miles away from Gloucester Royal. We had to transfer him ourselves as an ambulance wasn’t available (we waited over 12 hours for one). He then spent 2 weeks in Bristol, which is 27 miles from home. While he was in Bristol, Daddy Dino and I were alternating nights at the hospital so that there would always be one of us at home with the Unicorn and so she could be taken to school each morning by a parent.
Once he was discharged from the hospital there were still almost daily trips to Gloucester Royal for treatment as well as a couple more trips to Bristol for procedures and this will continue for at least 6 months. Once he reaches the final stage of treatment, he won’t need to go to the hospital quite as much so hopefully our mileage will drop considerably.
Another one of the obvious (and huge) costs of cancer is parking. Once you get to the hospital, there are the crippling hospital parking charges. Gloucester charges £11.50 for a stay between 6 & 24-hours. Fortunately, Gloucester has issued me with a free parking permit so I don’t need to pay to park there anymore. Unfortunately, we were not told about this and it was only by chance that I read about it in a leaflet and then asked the nursing staff about it that I got one.
Bristol, on the other hand, does not have such a scheme and parking is horrendous as the hospital is smack bang in the city centre so there is not much space for car parks. There is a 24-hour multi-storey car park just up the road from Bristol Children’s Hospital, this car park charges £6 for a 4-hour stay and £13.50 for a stay over 4-hours.
Loss of Earnings
As we are still quite early into the treatment loss of earnings hasn’t impacted us too much YET. I have a part-time job alongside my business and Daddy Dino has a full-time job. We are both currently on sick leave from paid employment and are both fortunate enough that for our first 6-months of sick leave we get full pay. After 6 months, Daddy Dino will return to work and I will most likely continue sick leave, at this point, I will drop to half pay for 6 months. If I continue sick leave beyond the second period of 6 months, I will not get paid at all. Bear in mind that the Dinosaur’s treatment will last for approximately 2 and a half years and that’s if it all goes to plan. This will likely become one of the major costs of cancer for us as a family.
When it comes to my business, I have stopped doing client work as I just cannot find the time to fit it in around caring for the Dinosaur and taking him to chemotherapy appointments so I have lost earnings there, I may be able to pick up some more client work again once he is in the maintenance stage of treatment (this is the final stage but also the longest stage and will last approximately 18-months) but at this point, I don’t know how many appointments he will continue to have.
Fuel, parking and loss of earnings are easily the biggest and most obvious costs of cancer and sadly a child who is diagnosed with cancer is not entitled to any benefits, such as Disability Living Allowance, for the first 3-months.
One of the biggest costs of cancer outside of travel and transport is clothing. We have had to buy quite a few new clothing items for the Dinosaur as well as ourselves. Firstly, the Dinosaur was prescribed steroids which made him eat a lot so he gained weight and needed roomier clothes. As he spent the first two weeks of treatment in hospital, he needed things like pyjamas and comfortable clothes that were easy to access, especially once he had his port fitted. One of the symptoms of leukaemia is excessive sweating, particularly at night, so he needed to change his clothes more often and have fresh pyjamas every day.
As Daddy Dino and I were alternating nights at the hospital so that the Unicorn got to see us both and so that we could take it in turns to get some rest, we both needed things like pyjamas and comfortable clothes for wearing whilst we were there.
Due to the increase in outfit changes for the Dinosaur because of his night sweats, accidents and spillages as well as keeping bedding and towels fresh for hospital stays our washing machine is on at least once a day. Luckily I have my EcoEgg (read my review here) which does help to reduce some of the costs of cancer.
Gas & Electricity
The Dinosaur feels the cold more and is not as active as he was before he became unwell so we are using our heating more than we would normally. Add into that the fact that Daddy Dino is not going out to work and the Dinosaur is not going out to pre-school so when he doesn’t have an appointment he is at home. Before cancer, on an average day it would just be me at home working so I wouldn’t really use much in the way of energy but with 3 of us at home for at least part of the day then we are using far more. Not forgetting the increased use of the washing machine. Now we have the increase in energy prices on top of our increased usage, not to mention the fact that our original supplier was one of those who went bust before Christmas so our monthly duel fuel direct debit has already increased from £80 a month to £140 a month when were switched to EDF Energy. I’m sure our increased usage is going to be another of the biggest costs of cancer
When you are spending hours upon hours in the hospital then comfort is everything, for both the parent and the child. Hospital bedding is not particularly comfortable as it needs to be easy to wash and sterilise. To make the room seem more homely and to help us be more comfortable on overnight stays we took things like dinosaur blankets (guess who for), pillows and a sleeping bag for the parent.
Luggage was an essential purchase. When we left the hospital after the initial 2-week stay we were warned that we would need to have a bag packed ready to go back to the hospital if the Dinosaur had a temperature of 38C. We bought a Trunki for the Dinosaur for him to put his activities in which also doubled as a toy as it is a ride-on suitcase for children. We also use a large wheeled suitcase for the clothes, food, chargers and other items that are essential for a hospital stay.
Spending more money on food was a bit of a surprise to be honest. It didn’t really enter my head just how much our food bill would increase. We were all eating every day before the diagnosis so seeing the grocery bill rocket was unexpected. Suddenly we were paying for:
- Food for the parent at the hospital as meals are not provided by the hospital when you are staying with your sick child. In the oncology wards, there is usually some kind of parents’ kitchen but you will only have access to a microwave, a kettle, a toaster and a fridge. If you are really lucky there might be a freezer as well. Needless to say buying food at the hospital or taking ready meals or convenience meals is one of the more expensive costs of cancer.
- Food for the child in hospital as chemotherapy affects taste as well as steroids making them ravenously hungry. We usually find ourselves having to provide food for the Dinosaur at our shared care hospital because he doesn’t fancy the 2 or 3 choices that are available on the menu (not many children would to be honest) and on a few occasions the food trolley has not even turned up to his ward so all that’s been on offer is a sandwich if you are lucky. This doesn’t help as the Dinosaur has never liked sandwiches. The combination of the poor food choices from the hospital catering coupled with his changing tastes and appetite means that we provide food for him as well.
- Food for home. The food bill at home is higher as we need to buy plenty of what he fancies to keep up with his steroid-induced hunger and his ever-changing tastes. We also find that there are some days when we perhaps don’t have the time, energy or inclination to cook a meal if it’s been a long day at the hospital so we find we are having ready meals, subscription box meals or calling for a takeaway. We are also paying for school dinners for the Unicorn so that there is one less thing to organise and remember on the busy days.
With things like appointments for chemotherapy, blood transfusions, waiting to go to theatre for bone marrow aspirations or lumbar punctures and emergency stays due to fever and therefore potential infection, we now spend a huge proportion of our time in hospital. It is essential to make sure you have plenty of things to keep both child and parent entertained. We take things like the Nintendo Switch (which was given to us as a wish granted by Molly Ollys Wishes), an Amazon Fire Kids tablet, busy bags (see how to make your own here) and my laptop so that we can watch films together, I can write and I can watch my own thing after he’s fallen asleep.
All the devices also mean that we spend money on things like Disney Plus, Netflix and Audible so that we know we will always be able to find something to do. Both children like to listen to a story on Audible to help them drift off to sleep.
Chargers & Extension Lead
All these devices require power so I make sure I have a couple of chargers in the bag as well as a multi-socket extension lead as there are never enough sockets in the room and they are never in the right place. As we keep a hospital bag packed and ready to go I bought extra chargers and extension lead so that I didn’t have to run around the house trying to find them, and therefore forgetting them, when we were trying to head out in an emergency.
The Dinosaur has been quite fortunate so far in that he hasn’t lost all of his hair. He has however lost some of his hair so it is quite patchy and he has a couple of noticeable bald spots. We bought him a selection of hats to wear if he chooses to cover the patchiness.
Even before diagnosis and treatment, the Dinosaur was finding it difficult to walk. Now that treatment has started he gets quite achy at times and also quite tired so he often refuses to walk. As he is too big for the pushchairs he had when he was a toddler, he now uses a specially designed mobility buggy. Some hospitals can provide these or wheelchairs for children with cancer, they can also be supplied by different charities and organisations but we decided to get our own. The decision to get our own was partly because we found it difficult to find someone to provide one and partly because Millie the Shepsky sheds fur all year round. I would have felt awful borrowing something like this and then returning it covered in dog hair. It doesn’t matter how much I clean, the hair gets everywhere!
This is a non-negotiable essential purchase if you have a child with cancer. As the leukaemia itself makes the Dinosaur prone to infection and the chemotherapy wipes out his immune system, we need to be extra vigilant when it comes to infections. If he gets a temperature of 38C then he has to go straight to the hospital for 48 hours of IV antibiotics. If for some reason we cannot transport him there ourselves, such as if there is heavy traffic or road closures, we have to call an ambulance for him to be blue lighted in. A high-quality thermometer such as the Braun ThermoScan 7 is a must-have and one of the most essential costs of cancer, in fact, it may even be worth investing in a couple so that you can have one for home and one for the child’s bag if they go to school or another caregiver.
One of the things that they don’t tell you about when your child receives a cancer diagnosis is just how much paperwork there will be! From hospital discharge letters, treatment flowsheets, medication information, dosage and administration instructions, medical procedure consent forms, medical trial consent forms, grant and benefit application forms and leaflets about various charities that can help, to keeping track of things like blood counts, hospital appointments, food and drink intake and questions you want to ask, stationery is another one of the essential costs of cancer.
I have a lever arch folder with punched pockets and dividers in it so that I can store all the paperwork in one place. I opted for punched pockets so that I didn’t lose pieces of paper until I could hole punch them or have to carry a hole punch around with me. I also invested in an A4 page-to-view-diary so that I could keep a note of the day to day things such as the appointments, what he had eaten and drunk (and times on the days when he was due for a general anaesthetic), discussions with various professionals like the play therapists and to remind me of the medication he had received that day.
As already mentioned, we have a bag packed and ready to go to the hospital at the drop of a hat. This means that we now have 2 sets of all toiletries so that we don’t forget anything when we are getting things together to head off. To try to reduce our single-use plastic consumption (read what else we are doing here) and save money, I refill the miniatures of things like shampoo and conditioner.
Treats for Siblings
Being told that your brother or sister has cancer is rubbish. All of a sudden your sibling has vanished and is in the hospital all the time, your parents are focussed on your sibling and are often at the hospital all the time as well, your sibling keeps getting given loads of presents by friends, relatives, neighbours and other well-wishers as well as by the hospital, you feel ignored and like your sick sibling is the centre of attention and that nobody cares about you anymore. Add to that the fact that you may not know what is going on with your sick sibling because you are not allowed to visit them in hospital, you’re scared about what is happening to them and possibly even worried that you might get cancer too… a sibling cancer diagnosis is a terrifying time and will change the entire families lives.
We have been making sure that the Unicorn’s routine is as normal as possible so she still goes to all her clubs and activities, on top of that we make sure that she gets to spend quality time with a parent as often as possible (minimum of once a week) doing things like swimming, cinema, cooking, shopping or days out. We also try to make sure that if the Dinosaur gets a treat or toy then the Unicorn does too. For instance, the Dinosaur was granted the wish of a Nintendo Switch and 2 games, as far as the children are aware, this was given to the family and belonged to all of us. We then bought her 2 games as well so that she can play on her own, with her brother or we can all play together as a family. These treats soon add up and quickly contribute to the costs of cancer.
This was recommended to us by the consultant at the hospital as a way of checking on him through the night whilst still being able to get some much-needed rest. Sadly the one from when the children were babies (we used the same one for both and as it is now nearly 10 years old it is pretty knackered) was broken so we purchased a new 2-way talk one so that I can talk to him and offer reassurance, this also has a built-in room thermometer so that I can make sure it doesn’t get too hot or cold in his room.