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.

About jet black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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20 Responses to Not normal

  1. Deborah says:

    Great post. I am slowly starting to accept my new normal, although I won’t pretend it’s easy.
    Take care my friend
    Deborah x

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  2. I really love your posts and no it’s not normal. I’m just happy for you that you are able to cope with all the ‘not normal’ and still have a damn good time. Long may it continue darling. xx

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  3. bembeezled says:

    Jet, I really admire the way you deal with all of the cards you’re dealt :) Its definitely not normal, Great post x

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  4. Becca says:

    Very well written Jet. So much rings true. Thanks for sharing so intimately with us. X

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  5. Lorraine says:

    I love staying at Penny Brohn Cancer Care. My husband and I have stayed there twice and found that it helped us both a great deal in getting on with our lives in a positive way after the diagnosis of myeloma six years ago.

    Like

  6. Elizellen says:

    Gosh, Jet, you sure do have a raft of medications to take each day. I must be one of the few who get off lightly after SCT as nowadays (3.5 years post op) I only take 3 Adcals a day plus my once a month trip to the hospital for Zoledronate and occasionally take some co-codamol if I have overdone it and the back feels unbearable..
    It is good to read what other people’s “new normal” is like. Mine is much more sedate, as I cannot walk or stand for long, but like you I have adjusted to it. Now I only do stuff if I want to, not because someone else expects me to do it. Selfish maybe, but I only have so much energy and will not waste it on unimportant (to me) activities.

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    • Jet Black says:

      I think you had an auto SCT Elizellen. That’s very different to and does not carry the same risks as nor GvHD complications as an allogeneic transplant.

      I don’t think what you describe is selfish, at least not in the negative way that it’s usually used. I’d call it self-protection or self-care. Well done for focusing your energy on what’s important. x

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  7. Terri J says:

    Like my daughter(she is the one with Myeloma at 32) says”It is what it is”. After the ranting & raving of anger at diagnoses & then the grief of losing the life you thought was going to be you have to move on & make your new life the best it can be. Sounds like you are doing a great job at this.

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    • Jet Black says:

      Yes Terri, you’re right. For now I am, but it changes, often dependent on which drugs I’m taking. I have had some very dark times. n steroids, I’m slightly euphoric, so everything is good. 😊👍

      Like

  8. catriona yule says:

    Not normal means you are not common-place or ordinary or conventional. Go your own way!

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  9. bev says:

    I too know “not normal”. What is funny is there was a time in the late 1980’s when everyone decided they were also not normal, and they ran around saying “What is ‘normal’ anyway?” Well we know what we mean. LOL. I was in a position to have been given meds, upon meds, afer the first drove me out of my mind they treated me by adding more–if that isn’t insane. I finally decided for myself that I would ssssllllooooowwwwlllyyy withdraw from everything and then see what was what. I must say that overall I am not “mental” anymore, and even though I could not breathe well or see well today and felt like parts of me were missing–this is not only not a 24/7 thing, it is an uncommon occurence. I took the cue from my grandmother who had “cancer of the blood”, that one could actually not take all their meds and still live beyond their years. I think she was misdiagnosed though, as we Indians in the family have sickle cell anemia…what did they know back then? They looked in a microscope at my blood twice–it could have been hit or miss. Now all the tests are automated, even when they specifically order a manual count–and everything is calculated out to be just fine…well I will let them believe that, before I go back for any more of their “treatment”. They knocked the human right out of me…I just wished for death after they got hold of me. My “to do” lists didn’t mean anything anymore…

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  10. Andy D says:

    Just found your blog. Love it. I’m 11 months post stem cell transplant myself (MM)… try to live to the theme of “Dancing in the Graveyard,” performed by Delta Rae. Check it out. I think you’ll like it. Just finished a 13 mile run on a cold sunny day. Yesterday I sat in clinic for two hours. Funny life, huh.

    Like

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