Day in the Life – Side Effects

During the early phases of treatment Hugo suffered with many of the side effects synonymous with cancer. His hair fell out, he was sick, tired and pale. He lost weight, his light dimmed and he looked ill. Now, in this final maintenance phase, the side effects are often less obvious, but very much still there.

Loss of appetite – chemotherapy, it seems, results in a strange relationship with food. It’s hard for Hugo to describe because he no longer knows any different, but I think food tastes strange to him, maybe it makes him feel a little sick. What I do know is that he doesn’t eat very much. When he does eat he tends to stick to very plain foods, such as pasta (no sauce), bread and butter, or cheese. He often eats in phases – he finds a food he likes and then eats it for breakfast, lunch and dinner. There are plenty of times when he barely eats at all and wakes up in the morning feeling ill and weak. Days when even Haribo or biscuits can’t tempt him. His diet is far from varied, he never hits his 5 a day and he drinks more milk than he should. I’ve heard stories of children that take a fancy to hot or spicy foods, because it’s the only thing that gives them some flavour. Other children refuse to eat at all and need a feeding tube. We have been told on many occasions by his team to just go with it. As long as he is eating something, then let him have what he fancies (within reason!). 

This means it’s rare for us to sit at the table as a family and all eat the same thing and it’s a guessing game as to whether Hugo will eat what he has asked for. We waste a lot of food and at times it’s hard not to feel frustrated when he refuses to eat the meal he has asked for. We still go out to restaurants (usually Pizza Express because Hugo likes dough balls….sometimes). Hugo may eat a little, sometimes we take a packed lunch for him, other times it’s just a glass of milk. It often becomes a game in distraction because Hugo has finished or rejected his food while the rest of us have barely started.

I have lots of photos on my phone of Hugo eating, because it’s so unusual and always gives me such pleasure to see him tucking into something, especially something new. 

I feel sad for him that he is missing out. He rarely gets any pleasure from food – no cold ice-cream on a hot day, takeaway pizza on a Saturday night or a warming roast on a Sunday. Sometimes I question whether we should push it more, is he playing us or just being fussy. Then I remember the times he rejects even sweets or the chemo breaks when his appetite improved and I know we need to just keep keeping on. That when he finishes treatment things will improve and a whole new wold of food will open up to him.

Weak muscles – one of the more noticeable side effects for Hugo has been muscle weakness because it has resulted in the need for a wheelchair. His legs and hips are weak, making it harder for him to walk any distance without tiring. Combined with a broken leg last March, it saw Hugo unable to walk at all for 10 months. The weakness extends to his ankles resulting in his feet turning in so he needs in-soles to support his foot arches. 

He also suffers from peripheral neuropathy (damage to the nerves) in his feet. All of this means it takes a lot more effort for him to walk and he is simply not able to keep up with his peers. He struggles to climb, run, hop or jump and even getting up from the floor can be tricky. It hard to see him unable to keep up, or struggle, but most of the time he gives it a go anyway and I’m so proud of his determination. Like most other side effects, this should improve once he has finished treatment, but it is impossible to say how long that might take.

Increased risk of infection – The chemotherapy Hugo takes means that he is constantly immunocompromised. He is at an increased risk of infections and should he get one, it would most likely be harder and take longer for him to fight it off. If he gets a temperature, his team act as if it’s an infection and he is given antibiotics (either orally or intravenously depending on how low his neutrophils are). Neutrophils are a type of white blood cell. They are the bodies first line of defence against infections. If they are too low (below 0.5) you are considered neutropenic and that risk of infection is greatly increased. Any time Hugo seems a little poorly, even just with a cold, I start to feel nervous at what might be coming. We end up watching him and his temperature very carefully with fingers firmly crossed. Hugo has been relatively lucky in comparison to other leukaemia patients and his infections have been few, but there have been enough of them for me to worry what the next cold will bring.

We have to be more aware of childhood illnesses such as chicken pox, as these can be incredibly serious for those with reduced immunity. His school notify us of any illnesses doing the rounds so we can keep him away from school if necessary and be on the lookout for any symptoms. It’s also much easier for his team to treat him if they know what they are dealing with.

We avoid softplay and other places where germs are more likely to be lurking. We wash hands, a lot, and I always carry antibacterial gel in an attempt to reduce the risk.

Anaemia – the chemotherapy also effects the red blood cells. If they are too low Hugo becomes anaemic, which he has been. A lot. A normal range is around 110-130. Hugo’s generally sit in the 90s or low 100s, even with an iron supplement, but have been as low as 80 (the cutoff for a transfusion being low 70s). Low levels of red blood cells result in tiredness and lack of energy, pallor, breathlessness, feeling cold and lack of appetite.

Tiredness – probably a more obvious side effect of chemotherapy. Not one that Hugo suffers greatly with, but he definitely doesn’t have the stamina his big brother had at his age. He likes his bed and if he’s particularly tired, will ask to go to bed early. If we are out, he will ask to get back into the wheelchair or sit quietly with me, even if there is fun to be had. He will often, determinedly, push through (because no child likes to miss out!) and then flake out within minutes of getting into the car.

Night sweats – these were actually one of Hugo’s symptoms at diagnosis, we just didn’t recognise it as such. More often that not, Hugo will sweat excessively at some point during the night. His hair, body and sheets will be soaking wet, often resulting in him waking up and a change of bedding. He sweats more during the day than other children too. A largely unknown, but very common side effect, usually worse when he’s also taking steroids.

Sensitivity
Physically – Hugo’s skin is more sensitive to the sun, he often breaks out in a ‘chemo rash’. His skin can be dry and low platelets means he can bruise more easily. At one point during his treatment he became hyper sensitive to touch. Getting his shoes on was painful, he couldn’t manage to have his hair brushed and the slightest knock, drying him after a bath, or even a cuddle could result in tears.

Emotionally – Hugo can be shy and wary. Whether this is down to the leukaemia or just his personality we will never know, but I can’t deny that Hugo has been wrapped up in cottonwool to some extent, that I have been over protective at times, despite my best efforts not to be. Sickness, a broken leg and a period of being unable to walk means he is used to being looked after, both at home and at hospitals and this has undoubtedly had an impact on his behaviour. 

It will be interesting to see the changes in Hugo once he finishes treatment. After 3 years of treatment it’s hard to remember Hugo before these side effects hit, and of course he would have changed so much during that time anyway. It’s hard to distinguish what is caused by the drugs and what is the leukaemia itself. Maybe there are side effects we won’t even be aware of until they fade away. These side effects are tough, but he hasn’t lost his spark, he’s still Hugo. My hope is that once he finishes treatment, that once he is free from the restraints of these side effects, his spark will continue to grow, that he will flourish and feel a glorious sense of freedom.