Where To Go?

Jul 26 2010

We’ve all felt low from time to time; like there is nowhere to go, no point to trying and that no matter what you do, there will be no preventing the worst possible outcome for you in that situation. I say “we’ve all felt” it, but the chances are very few of us will have even scratched the service of what it is to feel so low, that even the smallest change in circumstances, or a high pressure incident, will be the straw that breaks the camel’s back and cause a full scale breakdown.

That’s where we are today, after a busy weekend attending parties and festivals; Hayley is now lying in bed, fast asleep, after calling time on today at 16:00pm when a dark cloud loomed in above her head.


The week had started off with Hayley and I still feeling pretty much in the dark about where Camille was with her treatment, what the next stages would be and how the neurosurgeons were viewing our current situation. When Hayley took Camille to hospital on Wednesday she was feeling pretty upset and cross that we just hadn’t seen or heard from anybody in six to eight weeks. Since earlier in the year, we have been a specialist nurse down, a role that hasn’t been replaced. This has affected us more than we had ever imagined. Our remaining specialist nurse is great; very experienced, confident and great to talk to. However, there is only one of her and due to clinics and meetings and all the other elements to her role; we find it very difficult to get any time on the phone or in person to ask any questions that we may have. The role of Specialist Nurse is not probably classed as a front line service and therefore any vacant position is unlikely to be filled. I think both Hayley and I would really find the additional body so helpful so that we can all understand what we need to do to get Camille better.


With all these feelings bubbling around, Hayley and Camille stepped into the doctor’s room to have a quick check over before the chemotherapy could be given. The registrar indicated to Hayley that the temporary chemotherapy that Camille had been given whilst her kidneys get better was to continue for another cycle. This was news to Hayley and it wasn’t long before she was in front of Amos to finally find out what on Earth was happening. Amos has an amazing quality to be able to settle Hayley down and give her the confidence that she needs to get through this. Amos is also very confident and using phrases such as “I expect to be seeing Camille for check-ups many years into the future”, give Hayley, and I for that matter, a huge amount of confidence that our little girl is going to get better. So Amos cleared up where we are; there will be a kidney test and an MRI at the end of this cycle to determine whether the baby brain chemotherapy protocol can be restarted or whether we continue with Etoposide. Amos has also given us a channel to feed any concerns or questions through. I think that Hayley came out of that meeting feeling a lot better.


We had yet another busy weekend. On Saturday we travelled to Norfolk to attend the second birthday of another little girl from Addenbrooke’s, Melissa. I always find that house parties where you only know one or two people can be extremely hit or miss. Luckily, the group of people at the party were all quite good fun and we both thoroughly enjoyed ourselves. Melissa’s mum and dad have been great to Camille over the last year for which we are also very grateful.


On Sunday, we took to the road and travelled up to Mansfield for a music festival that was raising funds for the brain tumour research centre from Nottingham University. We did have an opportunity to talk to one of the representatives from the research facility about some of the work they are doing around Ependymoma brain tumours. There have been some recent breakthroughs to chemotherapy treatments and potentially, one day, children like Camille may be able to rely on chemotherapy to treat Ependymoma brain tumours rather than the more damaging radiotherapy. For Camille, Proton Therapy is still the ideal course of treatment after surgery and the work they are doing now will benefit a future generation of children who are struck down with this horrible illness.


The rest of the day was great, the girls had a wonderful time dancing and playing with a select few of the other attendees. There was live music on a large stage outside and also in the indoor VIP room that we had managed to get tickets for. We did have to leave a little early because of the distance to get home so we did miss the performance from Andy Scott-Lee, but to be honest, Hayley was more disappointed than I was.


So here we are; I sit typing this blog knowing that I am due to drive to Bournemouth in the morning on business for an overnight stay. I really feel low myself now knowing that Hayley is in a really bad place. My conscious is running all over the place; do I go tomorrow? Camille is due in for chemotherapy in the morning, if I am to make my meeting I will need to leave at 6.00am, well before Hayley is due to get up. How depressed is Hayley going to be when she wakes up? Since June last year I have been able to cope, to a degree, with Camille’s illness. There is a plan, more than one plan and a lot of experts who care about her every move. Then there is Hayley; I’ve said it before that I don’t know what to do to make things better. I’m the only person who watches Hayley and I am certainly no expert, I try to stay positive to keep Hayley positive, but today, out of the blue, she went into the darkness.