Today we went to ‘t Kwekkeltje, a playground for the kids, half an hour away by bike. It was nice to see them enjoy themselves, but an hour biking back and forth, and being in the playground was extremely tiring for me. As I said before, it is impossible to discern ‘regular’ MS symptoms from side effects from the chemo, or symptoms caused by cancer. Tiredness and brain fog (chemo brain), are well known, and common, side-effects of chemotherapy, and balance and speech problems correspond well to the location of the cancerous lesions in my cerebellum. But at the same time, these symptoms are not new to me. I had them a year ago, and also then they were much more pronounced when I was tired. I have to keep reminding myself that my ‘baseline’ is not being symptom-free. Many times per day, I am trying to feel whether the tumors are shrinking, wondering if the chemo is working. When I feel myself being extremely tired, when my balance is off, or when I feel ‘detached’ and have difficulty to concentrate, I doubt whether the treatment is working. The thing is, I don’t think I feel any worse than a year ago, before this whole cancer story started.
On the 14th of July, I have an MRI scan planned at the VUmc. The results from this scan will indicate if the first part of the treatment was effective. It is probably the only way of quantifying this; it will likely be a stressful time to wait for those results.
Blijf vertrouwen, Bram. Wij proberen het elke dag opnieuw!
Het is echt volkomen logisch dat je vreselijk moe voelt, dat ben je ook. Je lichaam is druk bezig, slurpt energie, je fietst, bent bezig met de kinderen, je gedachten staan niet stil, je slaapt niet 100% goed; het is een wonder dat je nog zoveel doet! Houd je lijf in de gaten en luister ernaar en pas je gedrag aan. Ik weet hoe moeilijk dat is, maar wel doen!