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I watch Felix laughing with his buddies; it makes me smile with the utmost pride. They are giggling and joking, oblivious to each other’s drip stand and bald heads. This is our new normal and there is still plenty of fun!
Since Felix’s diagnosis of acute lymphoblastic leukaemia (ALL) in January, family life for Team Brown has changed beyond recognition, but not necessarily in a bad way, it’s just different. Things have changed in terms of work, school, routines at home, social activities and then there is also the money side of it, the diet restrictions and medication challenges. It’s amazing how things have changed, but equally amazing how we have adjusted to our new lives.
Since Felix was diagnosed in January, I haven’t worked. Both me and my husband were signed off work with the emotional stress of it all and all the trips to hospital with Felix.
Those first six weeks were a blur and we were lucky if we slept and ate. Even though it was obvious that we were not fit for work, we still felt enormous guilt about letting our colleagues down. But, as the fog began to lift, my husband went back to work as we needed a sense of normality back.
We’re lucky to have supportive employers with a good sick pay scheme, but we know this will not last forever. If I’m honest, the money side of things are always niggling the back of my mind; the impact of a reduced salary, the additional costs of fuel and parking, new clothing because of the dramatic weight loss and gain. Then there’s the extra food and drink with the constant hope that this will help, extra expenses of social activities when we are trying to make the most of ‘good days’, the cost of things to keep them entertained during lengthy hospital admissions. As well as that, there are the copious microwave meals, snacks and drinks when we are with Felix in hospital and the extra cost of phone calls and data to keep family and friends updated. There is plenty of support out there though. There is entitlement to Disability Living Allowance and charities provide a huge variety of opportunities for children with cancer. This all takes time to find and apply for but it is well worth it.
Life at home has changed in very subtle ways. The most obvious for the family is that Felix doesn’t go to school. His older sister understands that whilst he might look well, he can’t go to school. This may be because he has an oncology review at the local hospital or, he may be having the community nurse round to do a blood draw or access his port ready for chemotherapy or, it might be that he has to have treatment either at Poole or Southampton Hospital. His older sister gets this, his younger brother doesn’t. He sees his big brother playing football in the garden and hanging out with his mates, sometimes he doesn’t seem ill, it’s too abstract for him to understand. When Felix was first diagnosed, we were keen for him to go to school whenever he could as we were worried about him losing contact with his friends. Now, we don’t really worry too much about school. He gets to see his friends every day on the school pick up and drop off, that’s all we are really worried about. He will go back to school when he is in maintenance therapy. At the moment, our priority is keeping him infection-free so that he stays out of hospital and his treatment goes to plan. His little brother can’t wait for him to go back to school, mostly because it means people will stop asking him how Felix is!
On a day-to-day basis, we try to make the best out of our routine. The twice daily temperature checks have now turned into the ‘guess the temperature’” game, the tablet taking is now a norm alongside the various creams and mouthwashes that help ease the side effects of chemo. The one thing that does cause a headache is his evening chemotherapy tablets which have to be taken an hour after eating and then Felix can’t eat for an hour after taking them. This one absolutely destroys any element of spontaneity for Felix in terms of evening snacks and so, instead, the whole family stick to these rules as a way of softening the blow for him. His restricted diet and the tap water ban makes us question everything he eats and drinks but it is getting easier. Sometimes it is easier for us to stay at home but we still do get out and about to do things. Once we explain to the restaurant or friends why we need foods cooked freshly and that he has to avoid certain food stuffs, they are always more than happy to oblige.
Things have changed for Team Brown, but I can honestly say that we do not feel short-changed by it all. Instead, we relish the fun and laughter in the small things, the things that don’t cost the earth. We love it when we are all back together after Felix has had a stay in hospital, little brother has a huge smile when Felix is well enough to play football and big sister enjoys chilling and swapping social media happenings with her kid brother who seems to have matured so much over the last few months.
At the moment things are different but a lot of things are actually going well. We don’t think about the future because we don’t have to, we just enjoy the good that is now. Life at this moment, at this time, is good.