I’ve been a bit lapse with updating this blog lately but things had been good and I felt at peace and fairly happy. Between my running, my job and my children I was content and also super busy. Then the bomb hit.. Dylan has relapsed AGAIN. We know it’s in his spine, we believe it’s also in his skull and we are currently waiting a scan to check everywhere else.
Originally the scan was planned for this week. However unlike the rest of the world, hospitals are not dropping covid restrictions and the requirement is still to shield before procedures and that only ONE parent can attend.
SO to make it fair we agreed that Mike would do the scan and I would go for the gene biopsy. Dylan will be having a general for the scan due to the length and complexity of how they are doing it and the biopsy is extremely risky as it is his spine so it is being led by CT.
We hadn’t had a biopsy date through only a pre op, so Mike took time off work and him and Dylan shielded for the scan. I continued to work. Then the scan got moved back slightly BUT the biopsy got pulled forward to the original scan date..
Now this is great as we needed it done asap however this now means I cannot attend EITHER as I haven’t been shielding. This has devastated me as let’s be honest what parent wouldn’t be upset at the thought of not being there when their child wakes up from surgery. But now the decision has been taking out of my hands and I can’t be there at any point. I’m frustrated, emotional and downright angry. But not at the restrictions, the fact I didn’t take the time off work as suggested by my boss, OR even the date getting moved as we needed it asap. What I am frustrated at is this..
Back in the first lockdown there was a lot of media attention over the restrictions on maternity services. And I get it 100% as Mike actually wasn’t there when Dylan was born as he was an emergency c-section under general. But let’s be completely honest, it wasn’t just maternity..
The oncology ward we go to has had a one parent rule the whole time and no sibling visits. Can you imagine being a young child faced with a brand new scary cancer diagnosis and the prospect of weeks (or even months) stuck in hospital and only being able to see one of your parents. Imagine brothers and sisters stuck at home scared and feeling helpless too, not being able to see their poorly sibling at all. It’s awful to think about let alone talk about. And for teenagers it was even worse, past a certain age NO parents were allowed at all same as for adults. But what teenager has the emotional resilience of an adult, what sixteen or seventeen year old in the face of cancer wouldn’t want a cuddle during procedures from their parent/carer. We also have to talk about the fact that a most of children’s cancer treatments, especially at the beginning, are done as inpatient stays rather than just in day clinics like adult care. But we don’t talk about kids getting cancer… no no no! Unless it’s on a certain big tv show where they use the heartbreaking “bald kids” stories for the bulk of the night to generate money but then childhood cancer research only actually only get 1% of that.. but I digress.
Supermarkets don’t go gold in September selling merchandise for children’s cancer like they go pink for breast cancer. There isn’t a huge scale race dedicated to fundraising for children’s cancer every year across the country. But there was once a time when breast cancer was considered rare and a “taboo” subject. It took YEARS for charities to break the silence and get to where we are now. We need to be doing the same for ALL cancer as it’s not as rare anymore and people need to realise how this pandemic has impacted services. Scans and treatments have been delayed, people haven’t received diagnoses until it’s been too late. Macmillan estimates that across the UK there are currently around 50,000 ‘missing diagnoses’ compared to the previous years diagnosis statistics. More than 650,000 people with cancer in the UK have experienced disruption to their cancer treatment or care because of Covid. For around 150,000 people this included delayed, rescheduled or cancelled treatment.
We need to speak up and let our voices be heard. We NEED to talk about all cancer!
