"A small piece of information would have made a big difference to me"
Posted by Claak58 (as ),
My husband received chemotherapy and radiotherapy treatment for Head and Neck cancer at the Beatson Oncology Unit in Glasgow in May/June 2014. The care and attention he received as a patient was nothing short of amazing and nothing was too much trouble.
Due to the nature of his cancer he could no longer eat and became extremely ill eventually requiring a nasogastric tube and in patient care towards the end of his treatment.
He was discharged a few days before the end of the radiotherapy sessions with a huge amount of medication and needed round the clock help. At each of the following radiotherapy session we had the comfort of him being checked over by the staff and if he needed any additional help it was arranged.
On the final day of treatment we said our goodbyes and that was that.
At home as expected my husband became increasingly worse with his skin on his neck breaking down and becoming very sore and requiring dressed.
Given that I was a) new to being a carer and 2) worried sick about my husband it was at this point I felt totally lost. We no longer were under the care of Beatson and I really didn't know where to turn. On looking at all the handouts I had received I was not really any further forward.
It wasn't until I was very upset at work that things changed when a friend of a friend who was a district nurse came to our aid. Apparently I should have been referred back to our GP to arrange for nursing directly from them. No-one told me of this at any time. Once the GP were informed, things settled and I was re-assured on a daily basis by the wonderful nurses there.
The small gap in communication was thankfully filled. Thankfully this didn't affect my husband, which was important but it did leave me feeling quite isolated and panicked.
A small piece of information would have made a big difference to me.