A day in the life....
Our Brain Tumour Support Workers regularly attend clinics
Brain Tumour Support Worker
I attend an outpatients clinic every week, alternately at two different hospitals. This ‘day in the life’ is an example of a fairly typical clinic day for me.
I left the house at 6.40am as usual to avoid rush hour and ensure I can guarantee getting to clinic before 9am. I grabbed a coffee, checked my emails and caught up with Facebook which alerted me to a client who had been admitted to the hospital, so I contacted her to offer to pop up to the ward to see her, after the clinic.
Before clinic, I met with the Consultant and Clinical Nurse Specialist (CNS), to go through that morning’s patient list. I identiﬁed a couple of familiar names, who I would catch up with and a few new patients, who may beneﬁt from our support. I met with those I already know - a lady who was accompanying her mum (the patient), they both come to one of my Support Groups. They were telling me about concerns regarding the mum’s speech and memory, which they felt were getting worse. We also talked about the practicalities of holidays and days out, which they are both keen to continue with.
While I was talking to them, I spotted another couple who I support, so I went on to meet them. They told me that they were anxious about news from the previous scan, which had shown some possible re-growth. This patient has a Grade 4 tumour, hence their acute anxiety. We passed some time, talking about the family’s fundraising activities for Brain Tumour Support and also about the day care that the patient had been receiving at a local hospice and that his wife and daughter had been receiving counselling, also via the hospice. Thankfully, the apparent growth turned out to be pseudo-progression, which offered them some relief.
Next, the CNS introduced me to a newly diagnosed patient and his wife. Neither of them were quite sure as to whether they needed any support, or indeed what kind they might need, so I talked to them about our support options, re-iterated that they could access the support at any time and offered them some literature to read through.
Later in the clinic, another couple I support arrived. The patient had visibly deteriorated and was in a wheelchair, with spinal pain and his wife was very anxious. I sat with them and held her hand. They were due in clinic for the latest scan results and feared bad news.
I waited until they came out of the consulting room and they were both very distressed. The scan had revealed spinal lesions and the CNS suggested admitting the patient for pain control, but his wife was very much against this, insisting that she could cope. I asked the patient what his wishes were and he was determined that he wanted to go home. The CNS contacted the palliative care team and I had a chat with the couple about palliative vs end-of-life care, particularly as there was the option of some palliative spinal radiotherapy. I offered my ongoing support for them both.
After clinic, I texted my patient on the ward to tell her I was on my way with a cup of decent tea for her! She told me about the circumstances around her being admitted and I chatted to her and her mum for a while. This lady is only in her 30s and has a high-grade tumour, yet she shows such amazing courage.
My drive home took about an hour, which is fairly usual. Once home, at about 3.30pm, I completed all admin and records for the day, checked for any urgent emails, and received a message from my (in)patient, to say that she had been discharged.
The typical ups and downs of a day in clinic.