Treatment Day

Every fourth Friday is Nivoumab Infusion day. The first few were an exciting new experience, but it’s getting to be routine now. Treatment Quest goes something like this: Two buses to get to the hospital. One of them broke down once, but it’s not too far to walk if required. Then let the nurses know I’m here. If the treatment bay isn’t too busy, start immediately on tests: blood pressure, weight, temperature and heart rate.

Nivolumab Timeline

Diary of noticed effects of Nivolumab treatment, when given once every 4 weeks. Each treatment takes most of a day with blood tests, followed by doctor check, followed by pharmacy preparing the drug, followed by a little over an hour of infusion time. The side-effects are of course different for everyone August and September 2018 Didn’t really notice any effects. A little more tired than usual. October November December 2018

Scanxiety

During this year of immunotherapy treatment my Dr has scheduled regular scans - every three months, to check that the cancer hasn’t progressed. I had CT and MRI scans earlier this week, and I’m expecting results on Friday. It’s strange that on Friday as I talk to the Dr, there will be a precise moment when my life goes one of two ways - either absolutely fine (until the next scan at least), or else everything changes once again.

Nivolumab

Okay, it starts to get a bit science-fiction here. At followup with the surgeon I got told the cancer had begun to spread, so I’m at very high risk of it returning (likelihood within a few years). At this point it’s impossible to remove the traces that are left, it’s just about waiting for it to show up elsewhere. The NHS could offer a referral to a clinical oncologist, in this case a radiotherapy specialist.

Operation: Recovery

Days since surgery: 3 Tired and limping out of the ward with discharge letter in hand. I’m relieved to be in a taxi and heading home. Days since surgery: 7 First appointment with the clinic to review my dressings. The foam cap on my head which covers the skin graft has been attached with about 14 metal staples. The nurse pulls them out one by one. Apart from the last few which break on extraction so need a bit of digging around to pull them out completely.

Online support

Like many people I’m sure, I turned online to read the stories of other people with cancer of a similar sort to mine. There are a mass of forums, support groups, helpful advice and well-meaning health tips. One certain forum became a bit of an addiction shortly after diagnosis. I would read threads started by people in my situation - just diagnosed - from as long as ten years ago. The same morbid pattern repeats on all of them - questions about diagnosis, followed by questions about treatment, a bit of a gap, maybe one more post about the cancer having progressed to stage 4, and then no more updates.

Hospital

So here I am in St Georges hospital, south London, with a lot of time on my hands. Night 1 I think the surgery went well. It’s difficult to know, as I only get a minute or two to speak to a doctor each day. However, staying in an NHS ward is surely not the best thing for healing right now. My blood pressure is taken every 4 hours, 24 hours a day.

Got To Be Positive

Days until surgery: 5 In the days leading up to surgery, I’m choosing to tell quite a few people what I’m going through. Some people at work know, as they’ll have to fill in for me while I’m off recovering. Family have been updated since diagnosis. But with surgery looming and the thought of the prominent neck scars, I feel it’s easier to tell most people I’m likely to see in the next few months.

Treatment

Days since diagnosis: 24 After three agonising weeks waiting, I saw the consultant who’ll be leading my initial treatment - surgery to cut out the melanoma from my scalp and the lymph nodes the cancer has spread to. They explain that the excision of the melanoma is fairly routine - to be honest, it’s barely mentioned during the appointment. The major part of the surgery is what is known as a Neck Dissection.

Macmillan

Macmillan rock. Seriously. Everyone has seen the adverts, but until you’ve been through it it’s difficult to understand exactly how beneficial their support is. Macmillan train and fund nurses who give expert care and support. They provide information not just for patients but their friends and family. A Macmillan nurse gave me my diagnosis and took the time to make sure I understood everything and what the next steps are. And are at the end of the phone for any further support.

Diagnosis

So the name of the blog gives away the ending of this post, I won’t try to build any suspense. It was a regular visit to the doctor that started the whirlwind. A fairly large mole on my scalp, a previous GP had two years ago dismissed it as a harmless “seborrheic keratosis”, a second opinion couldn’t have been more different. A referral under the “two week” rule on the NHS, a fast-track of referrals for suspected cancer.