Weekus Horribilus

Sep 20 2009

So, this week was always going to be hugely important in Camille's treatment protocol and could easily pave the way for a change in treatment or tumour resection surgery.

Camille had been feeling the effects of the last Chemotherapy ever since she got taken off the drip the previous week, and had been consistently vomiting and generally lethargic. We got back to Addenbrookes on Wednesday for the MRI scan; Hayley and I were extremely nervous to say the least, even though we new the results wouldn't be with us for a week or so.

We arrived at 10.00am and had to pop upstairs for Camille to undergo an eye test; with all of these things I am always surprised how much they can get out of some very basic checks. It seems that her sight is holding up under the chemotherapy and tumour, and there doesn't appear to be any pressure behind her eyes. We walked back to the PDU for Camille to be sedated ready for the MRI scan.

I wasn't able to go into the MRI scan that diagnosed her condition. However, this time Hayley and I swapped roles. It's interesting going into one of these scans; they take about 15-20 minutes to do and consist of multiple scans each lasting a couple of minutes. The noises the machine are something you would expect from a nuclear submarine. Camille obviously slept through the experience due to the sedation, but the odd twitch of her leg or arms led to a brief twitch of my bum. The radiographer issued me with a stress ball shaped alarm trigger to notify them if she was awake; luckily the alarm remained unsqueezed and my trousers remained clean.

After she was given the all clear to go, we left for home for another horrible wait for the results. However, the wait was no where near as long as we had expected; less than twenty-four hours passed when the phone rang and I answered. The voice on the other end of the phone was Harry, one of our Special Oncology Nurses at Addenbrookes , she greeted me with "We've got some good news", automatically my optimistic, unrealistic side decided to pop up; has it vanished to nothing? Is she going to get the operation?. "The tumour hasn't grown, and is as it was" she continued. This is actually really positive, it means a pretty aggressive tumour has been stunted and has stopped growing. Also, the chances are, there would have been some growth between the first scan and chemotherapy starting, so the tumour may now be reducing in size. This thought was reiterated by Amos when we ran into him the following day; which brings me back to Harry's phone call.

"So, that's great news, but the scan has shown her fourth ventricle is a bit swollen, which suggests the shunt is blocked". The conversation continued, as Harry is particularly skilled at talking without taking a breath. We had to get her to Addenbrookes straight away via an Ambulance from Ipswich Hospital, but the risk was serious as pressure build-up is potentially fatal. Hayley travelled in the Ambulance while I took the car and we arrived at a similar time.

Camille was inspected by the doctors who decided to leave the operation to the following day as she wasn't in immediate danger. Mr Garnett came to see us in the morning, but much to our dismay, he issued us with the news that he would not be performing the procedure himself, it would be one of the other surgeons. Camille went up fairly early and was out and in recovery before we knew it. Again, Hayley became upset over the sight of Camille going under, something we will never feel comfortable about. The shunt was blocked and needed replacing; a simple procedure for the Neurosurgical team.

That afternoon she was pretty bright, but the food was not staying down and by the next morning she was back to being lethargic and really pretty unwell. The further we went through the day the worse she looked, and by the time Mr Garnett came down with her CT scan results she was pretty vacant and hardly moving or talking. The scan had shown the operation hadn't worked and the replacement shunt was also blocked. The only thing to do was to get her back up to theatre immediately to repeat the operation. This was of course upsetting but it was urgent that she was operated on and we just had to accept that she was going to have to go through it again. We have to say that the only reason we managed to get Camille looked at so quickly was down to our nurse Jo. She actually went that bit further than she probably needed to and made sure that Camille had the best care that she possibly could. We are very grateful for her effort yesterday and I hope her care for the patients does not go unnoticed by the ward management.

She came out of theatre early evening and slept until this morning. She's not been a lot better this morning but as the day has gone on, she has become more animated and talkative. A further scan has now shown the second operation was a success, and we feel a lot better on the back of that news.

Hayley is now at Lucia's birthday party, which I've unfortunately had to miss. It was horrible saying to her this morning that it would only be Mummy there. We'll have to make it up to her when all of this is over.