Yes, Yes, Yes, Yes, No

Jun 21 2010

This week was always going to be an important point in Camille’s treatment as we were due to get on with her chemotherapy after her septic shock episode. Hayley and I actually seemed fairly confident when we arrived at Addenbrooke’s on Monday for Camille to have her kidney function test to see how quickly she will be able to clear the chemotherapy. This test is a standard procedure that takes place every eight weeks before each new course of chemotherapy starts; Camille gets injected with a radioactive fluid and then over four hours, she is monitored then over the following four hours to see the levels remaining at various stages.

Camille is not good with this test as she has to use a cannula in her foot; but after a lot of screaming the fluid was injected into her veins and the Geiger counter confirmed that it had gone in successfully. I managed to arrange a meeting locally so I popped away from the hospital and picked the girls up at the very end of the four hours. At this point, we knew that Camille had an MRI scan on Thursday and we were hoping to start chemotherapy again whilst she was there that day.

Camille had recovered fairly well following the renal failure at the start of May.  Her 'Creatinine' levels were well within normal range so we did not fear the results of the kidney function test. On Wednesday, whilst I was out at a meeting, Hayley received a call from the hospital. The kidney function test had shown that her ability to clear the chemotherapy had deteriorated significantly from pre-infection levels and we would not be able to continue the best chemotherapy protocol that had shown such marvellous results. Obviously Hayley was devastated, but when she called me, there was not just utter devastation, but also anger. This was big news for us, a major and very significant issue in getting our girl cured and I think we were both shocked that our Consultant hadn’t called himself.  The doctor that did call us was quite matter of fact and referred to Camille as 'Camilla', even though she has been a patient on the ward for twelve months. The NHS have been brilliant, but this particular incident was not good enough, we have fought so hard to ensure that Camille is treated on the basis that she is a wonderful, amazing, beautfiul and unique individual, the doctor who called may as well of just referred to her by her hospital number, patient XXXX - for that is how impersonal the call was. 

We arrived in Addenbrooke’s early the following morning for the MRI, still feeling deflated, worried beyond belief and frustrated with the impersonal treatment from the previous day. Harry our specialist nurse was trying hard to settle our nerves by saying that the “plan B” chemotherapy protocol can be used just for a short period until the kidneys recover fully, but who is to say that the kidneys will get back to their full efficiency? Plan B is a place that we don’t want to be, we know that the chemotherapy is not as powerful as our current protocol and has a much shorter window of opportunity.  That made this MRI scan even more important, as this could now be a good opportunity to operate for the first time. This again is a step that we know we need to take at some point, but the thought of Camille going into that surgery scares the life out of us, she is so well in herself at the moment and we have no idea what damage this could do to her.

Camille was given her sedation through her NG tube a good forty-five minutes before the scan was due, but unfortunately she was sick after having the fluid. The nurse was trying to tell us that she only brought up a couple of millilitres of the 13 millilitre solution, but it was clearly more. Camille didn’t really go off at all; it took a good brisk walk in her tripper to send her off. We made our way to the MRI suite and as I moved her out of her buggy, on to the bed she woke up. This was clearly not good news as the scanners are so loud she would never have stayed still for the thirty minutes required. She did drift off again, so we gave it a try. She managed to stay asleep right up until the machine began its deafening clanking noise. Camille began to flinch and bring her arms up to her face, so we stopped the machine and got her out. Again she drifted off, so we tried once more, this time no different to the first. So that was it, we had to go away with no scan results and no idea of what we were looking at next.

MRI scans get booked up a long way in advance of anything happening, so we were surprised when Harry called later that afternoon to say that we may have an emergency slot for the following day. We arrived at 10.00am on Friday morning and this time there was no chance of her waking up as she was given a full general anaesthetic.

It has now been 80 hours since that scan and we are still waiting for any indication of what the scan has shown.  There are no words to describe how difficult this wait is, we had assumed we would hear something today and have called the hospital several times - the lack of news is increasing Hayley's anxiety to levels that I haven't seen before.  She has imagined every possible scenario and mulled over the telephone conversation we are desperately waiting for.  This is so unfair, if doctor's working on any Oncology ward at any hospital in the country could feel this pain and anxiety, they would never let parents wait beyond a few hours for a preliminary result. 

After such a deflating week, the weekend was spent thinking about what was going to happen now. I took Lucia and Camille to Lucia’s tennis lesson to give Hayley some time alone. I don’t think it helped one little bit but giving her the opportunity once in a while has got to be a good thing.

Sunday was Father’s Day and we headed off to the Suffolk Food Hall where the Bungee Jump day is going to be held in August. They had an event for the RNLI and it was good to see how the site will look once we get everything together on the day. The actual food hall does have a nice restaurant upstairs where we had a good hearty brunch. As we waited patiently for our Suffolk Sizzlers, Hayley was trying to get my attention about a woman that had just walked in. Now I am a pretty well trained husband, and if it had been a friend who had asked me to look at a woman, I would have probably done so quickly, secretly and with no hesitation; but as this request came from my wife, I used my ever dwindling intelligence and delayed the customary “scout” for at least twenty seconds. Hayley asked “Is that Faye from Steps?” So there you have it, not only is Suffolk famous for errrr, ermmmm, hmmmm. Anyway, now we have Faye from Steps.

Finally, Stewart and I appeared on the Lesley Dolphin show on BBC Radio Suffolk this week. We did two separate interviews one after each other which seemed to go quite well. If you get the opportunity, go to the BBC iPlayer and listen to the show that was on Thursday; you will have a good laugh at me starting each sentence with “Yeah, No” like the old guy from the Vicar of Dibley. Never mind.