Hear my voice | Cancer Patient Partner, Adrian Goodwin

It does not seem possible that it was November last year that I last put pen to paper – well, finger to iPad. So much has happened and more importantly I am still here, now 14 months past my “sell by date”! I still work 08:30 – 12:30, Monday to Friday. I had received radiotherapy, two lots of chemo and been informed that the cancer was still growing in my throat and lungs.

A new treatment was to be considered – MABS – monoclonal antibodies (James Allison, Nobel Prize for Medicine 2018). It had to be sanctioned by NICE and funded by the Cancer Fund (for up to two years). The process took several months over which time my tumours grew. I am no clinician, but as I understand it, MABs allow your own immune system to “see” certain cancers and therefore attack it, whereas normally cancer “cloaks” itself which allows it to grow unchecked. Treatment is via infusion every two weeks, with a CT scan every 8 weeks, to see what the tumours are up to. If the tumours have grown, then the medication is stopped, and nature takes its course. But if they stay the same size, or shrink, then medication continues. Up until last week there had been no change, but then… the tumours in my lungs began to shrink! However, in the middle of this, my thyroid decided it was due a “holiday”. No big deal we were told, other than the side effects of a non-functioning thyroid (all the same as the ones for my cancer, the chemo, the radiotherapy and the MAB) – never rains but it pours!

But this news for me and my family does not mean that things are good for all of us out there – which is why we should focus on helping others. Us Cancer Patient Partners have been working hard across the board on representing people affected by cancer. With the help of our Volunteer and Engagement Officer, Cheryl Huggins, we have:

Reviewed and commented on the new Macmillan Pod area and leaflet at Broomfield Hospital:

Having been a patient at this hospital, I felt it important that I contribute and provide support to what I regard as a very valuable service for patients. I suggested word changes to remove confusion and a request that the Macmillan staff could give advice and support on financial matters like Attendance Allowance and Blue Badges, which can be issued by the NHS to terminally ill patients and would have been so useful to us in the first few months of living with the disease.

Completed an online training course on the NHS, it’s funding, operation and challenges: 

Did you know the NHS employs 1.5 million people (oddly enough the population of Essex) and is the fifth largest employer in the world? Is it any surprise that change is not that easy especially when the various entities actually have autonomy – there may be direction from the centre (or top, depending on your view) but implementation, time scales and investment are a local decision? 

Reviewed the NHS Cancer Patient Survey results and input into local action planning: 

Having individually reviewed the results, we input ideas and observations via Healthwatch Essex – I related the questions and answers I saw back to my own journey and the experiences I had along the way.

Reviewed plans for the Macmillan Cancer Support Pod at Basildon Hospital: 

My thoughts were based on my experience at the Radiotheraphy Unit at Colchester General. Small alcoves with 4 or 6 chairs where you can meet and talk to others (or not!), warm colours on the walls and murals, coffee and biscuits with a subscriptions box. In short, a place you are “happy” even if what you are waiting for is not pleasant.

Healthwatch Essex were approached by Heart FM to talk about our cancer experiences: 

One of my fellow Cancer Patient Partners chose to participate in this, which I am very much looking forward to hearing once complete. I chose to step back on this occasion – I believe I am much better at face to face activities, where I can judge people’s response to my comments and respond accordingly. 

Observation at training of GP Practice Nurses in cancer care across Essex: 

My colleagues participated in this at various centres across the county with very positive feedback. I was not able to participate due to timing and location – my work is very understanding, but not that understanding!

Input on Lung Cancer Pathway and End of Treatment Summaries: 

I assisted the NHS, CCG and Macmillan Team by reading documents and inputting my ideas on the content and format to make them more meaningful and easier to read. 

Review the Cancer Services Directory: 

An excellent idea to help newly diagnosed patients to navigate their way around services. It gives guidance and contact information, which is vital when first diagnosed. 

 

Aside from all of this, I personally have been pursuing a complaint with Broomfield PALs regarding Oncology appointments at St. Andrews, being made as ‘Plastic Surgery’ appointments. In the two years I have been attending the Oncology clinic, all my appointment letters have been for the plastic surgery consultant and the plastic surgery clinic – the first time I received one, I thought they were planning reconstructive surgery on my face for an operation they had not yet told me about! It causes confusion when you arrive and book in – I often get told I do not have an appointment. This process is unfortunately ongoing.

My word to you – if you have cancer or support someone who does, you too can help by becoming a Cancer Patient Partner with Healthwatch Essex. You can give as much or as little time as fits in with your lifestyle / illness, work online or get out to meetings – whatever suits you best. But either way, you can help others with your experiences. I have also found that although it involves discussing my illness, it means I have something else to think about and that takes my mind off the future – if you know what I mean.