Our journey: The story so far

I've neglected the blog updates as there has been a lot going on so I'll try to make up for it with this update. Where to begin...when I last posted my husband had just had his PET CT scan and was due to start treatment. Things didn't go to plan!  We arrived at the hospital all geared up to start the first treatment, and the first step was to have a blood test. An hour later and the blood results were in and it was time to see the consultant. We were told that the clinical trial was no longer an option. The reason given was that the PET CT scan had been rejected by the clinical trial team as it took longer than the clinical trial timings permit. I couldnt believe what I was hearing! The clinical trial had been sold to us as the best available treatment for Hodgkin's Lymphoma, with proactive medical management. Now this was no longer an option. The cause was something totally out of our control too! The PET CT team took too long with the scan and we were being told that we'd missed out on the trial by 4 minutes!! I wasn't prepared to just accept this so I asked the consultant and clinical trial nurse what our options were, only to be told that this was out of their control; there was nothing further that could be done. My husband should start his treatment that day (30th June) and this would be ABVD chemotherapy and we would not find out until the end of the full treatment cycles if this had worked.  Well I couldn't accept this! I had already lost my Mum to medical neglect! My Dad was diagnosed as terminal when they couldn't remove his tumours via surgery; and here I was sat in another consultants room with more disastrous news! I wasn't prepared to just leave it there and I told them so, but I needed more information in order to set the wheels in motion. Could the hospital still schedule the periodic PET CT scans as part of the treatment programme so my husband could get the proactive medical management? What was the impact of having chemo today in terms of me taking this further with the clinical trial team?  The answer to the first question was this wasn't possible as the PET CT scans were only performed with the trial. The second question was answered quite simply; once treatment has started he would no longer fit the criteria. Faced with this news and the knowledge that by progressing the issue over the trial we would be delaying treatment (which could be extremely costly) I asked if we could have a moment to think about this. I'd made my feelings quite clear...this error was not down to my husband who had done everything that had been asked of him in the lead up to this moment. He had endured multiple procedures and scans; arriving early for every appointment, and due to an error by another hospital his options and healthcare plan were affected. This did not sit well..I felt like the wheels of my life were falling off and looking at my husband I could see he was the same.