Not normal

Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to dinner and concerts, speeding around the country, planning a house extension, doing courses, buying clothes and treats. It looks like fun.

Some may even feel envious, resentful. Yes, I have seen it. And I’ve experienced some pretty bad behaviour. What??? Yes, I know!

Don’t get me wrong. It IS fun. A LOT of fun. I’m having a blast. At the moment, a lot of how I’m feeling is down to the euphoric effect of the steroids I’m taking. But even without the steroids, life is good at present.

Good, but definitely NOT normal. Or not the normal-for-me that I used to know.

I don’t feel sorry or sad about it. I don’t mourn for my old life. I am lucky that my character has allowed me to accept how things are relatively easily. Everyone deals with the initial shock and horror of a cancer diagnosis in their own way, but there is usually anger, disbelief, grief, fear, etc. However as time passes, that can change and it has for me. I don’t claim any great enlightenment skills. I pretty much surrendered to it all from the beginning and that has worked well for me.

This is not the case for everyone though. I have met people, even at a similar way down the cancer road to me, who are not at ease, who rail against it all, angry, heartbreakingly sad and resentful that this is not the life they want, that they’re not getting what they think life promised them. I can’t say I don’t judge them for it, but I certainly do not judge them harshly. I wish them ease and acceptance. But each of us has our own journey, so they will hopefully find something they need along their path, a much harder path it seems to me.

I cannot say that I’ve enjoyed the journey, and there have definitely been times that have been really tough, that I can’t explain to someone who hasn’t been through something similar, at least not in a way that they can really ‘get it’.

I am fortunate that I have good care, good loving people around me, access to free-to-me medication from the wonderful National Health Service [NHS], access to both government benefits and financial support from my family that allow me to do all those things above. And that allow me not to live in fear of extreme poverty that I know others face.

BUT it is NOT normal.

I am writing this at 5:45am on a Wednesday morning, in a fresh, modern, very comfortable, hotel-style bedroom at the Penny Brohn Cancer Care Centre, where I’m participating on a Living Well with Cancer 2-day residential course. All free!

I’m wide awake and have been for over an hour. I look to my right, to the bedside table and see the medicinal accoutrements of my life.

This is a list of all the medication I take currently:
– Penicillin (antibiotic) as prophylactic
– Aciclovir (antiviral) as prophylactic
– Fluoxetine (antidepressant)
– Imatinib (protein tyrosine kinase inhibitor) for lung GvHD, although usually prescribed for Chronic myeloid leukaemia [CML]
– Prednisolone (steroid) for lung and sclerodermatous GvHD
– Montelukast (Leukotriene antagonist) for lung GvHD/asthma
– Lansoprazole (proton pump inhibitor) to protect my stomach/guts against the other meds
– Azithromycin (antibiotic) for lung GvHD
– Alendronic acid for bone protection due to osteoporosis
– Seretide inhaler (steroid) for lung GvHD, complete with an AeroChamber Plus for administering the drug
– Posaconazole (antifungal) to protect against oral thrush
– Nystatin (antifungal) to treat oral thrush
– Vagifem (oestrogen pessary) for vaginal GvHD
– Lacrilube ointment for dry eyes
– Systane Ultra eye drops for dry eyes
– Omega 7 for dry eyes (not prescribed – food supplement)
– Menopace Plus for post-menopausal well-being (not prescribed – food supplement)
– Eyebag (a heat pad for the eyes) for dry eyes

In my handbag I always have a supply of the Systane eye drops, Paracetamol and Codeine tablets and boiled sweets or mints (nothing too strong) for my mouth. Yes, I know sugar isn’t good for thrush, but that’s my choice. I can live with the thrush. It won’t kill me and it will go once I’m no longer on the steroids. This conversation is NOT normal. But it is for me these days.

I’m aware of a tightness in my torso and lungs, tingling in my feet and legs, stiffness in my legs and vague aches at my knees and elbows. I know when I get out of bed in an hour or two, that I shall not be nimble, despite the steroids. I huff and puff and cannot bend well to put on underwear, pants, socks, bras. None of this stops me, but it is NOT normal.

I know that later in the day my eyes will become blurry due to the steroids and neither the eye drops nor the eye bag really make much impact, or not for long. This has affected my day-to-day existence. My friend, concerned for me, insisted on driving me to/from Bristol. It was relaxing being chauffeur-driven, but it’s NOT normal.

I have a whole new vocabulary of medical terminology. I have become an expert patient. My immune system may be compromised but my scientific curiosity has been energised. I enjoy learning all about this disease and it’s treatment. This is NOT normal. I was never a scientist.

Many cancer patients and probably others who develop diseases/conditions that are life-shortening, who had a ‘normal’ life previously, talk about “the new normal”. And this is how my life is now.