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When I left you last, Mum was in recovery from breast cancer and Dad’s melanoma was kicking him in the groin (literally). They are amazing people, and fortunately for me they coped and are coping incredibly well with the challenges. Apparently this wasn’t enough to contend with, a trifecta was called for though I thought we had already achieved that. Not to be upstaged, my cancer leapt out of hibernation. My dreaded paraprotein levels (42 at their worst, down to 1 after treatment) are now at 17.
It was gutting to see the Myeloma active again after such a short time. I was again hit by how I wasn’t ‘special’. I wasn’t going to be the person who is miraculously cured by the new cutting edge treatment. I wasn’t going to be one of the statistics up the right (and right) end of the bell curve. I was firmly in the middle of the pack. My body had responded very well to treatment but I was one of the many people who experience the peripheral neuropathy side effect and have their myeloma become active again within 6 months after first treatment. I was well and truly on the path to being the ‘typical’ (albeit younger than usual) Myeloma patient with an 8-10 year life expectancy after diagnosis. I’m almost three years in now…well, you can do the maths.
The big upside of being on care as usual and watch and wait, is that over the last six to nine months I haven’t had to go to hospital every week, its mostly been monthly. Except that while my schedule was clearer, I had time to pack in everything that had been on hold while cancer took pride of place. More tests, x-rays, MRIs; I felt like an old hand, navigating the hospital walkways, waiting rooms and procedures with robotic familiarity. The increasingly unbearable pain in my hands, arms and ankles was not Rheumatoid Arthritis after all but more likely the bloody Myeloma.
A rotator cuff injury in my left shoulder (to go with the benign lesion that was already there, maybe it was lonely?) needs physiotherapy. It’s about nine months since the referral, no sign of an appointment yet. I have had a letter asking, do I still want an appointment?. Yes I bloody well do thanks! Well in that case, don’t contact us we’ll contact you, was the reply. Note to Health Secretary (It’s not Jeremy Hunt these days is it, hope not, though sadly I don’t know who it is and if they are any better, could they be worse? That thought is scary!!). Anyway back to the note – Dear Health Secretary, please get the physio department more resources, they are swamped! Hmmm.. not much time off hospital after all.
My next round of treatment was due to start when my paraproteins were up to about 30 (or if they started increasing rapidly). Mine had been rising steadily in 1-2 points a month. A January 2020 start back at hospital seemed a reasonable prediction and hubby and I had talked of getting away for a, never before done together three month trip, prior to the treatment shackles going back on. When Dr B said we need to start treatment ASAP, I’m worried about your back. I said no you don’t, we’re out of here. I’ve been dying to go to the middle east so as I’m dying, I’m going!
What I really said was, boo I had hoped it would be January not October, can I put chemo off for a while? He asked if I felt well enough to travel. Of course I said yes. I really do wonder what I would have said if I hadn’t felt well enough. I suspect I would have lied, said yes anyway.
I was going to test the concept of ‘patient choice’, there is such a thing isn’t there? Nothing was going to stop me getting away with hubby. We both needed a break and this rare chance where we had time off work/hospital at the same time was not going to be missed. I asked what I could do to prepare for the next round of chemo. Dr B said the best thing was to stay positive.
Ha, all the more reason for me to travel before starting treatment then. Being my ‘adventurer self’, experiencing new places, cultures, food, wine with the love of my life, IS what nourishes my soul and makes me feel positive! We negotiated with Dr B for chemotherapy to start in six weeks; not the three months I’d hoped for but brilliant all the same. A strange mix of worry (about treatment) and euphoria surged through my body. I noticed a feeling and realised it was excitement! I hadn’t felt that in ages. Walking home from clinic, visions of Israel, Lebanon and Jordan flooded my mind. I went straight in and booked flights.
I’m back now from an amazing trip. I feel ready. Really ready for the next phase of this Myeloma madness. I even feel hopeful (albeit on top of my usual layer of pragmatism) that I could still be a wee bit special. I could still get that fantastic recovery that may not be likely but is POSSIBLE.
Month one of the new treatment regime. Hit me with it Doc. I can take it. I’ve just knocked three more countries off my bucket list (big grin).
Images: Various places in Israel – Hubby or Me
© 2019 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Cancer in my family, Myeloma Treatment, peripheral neuropathy, Psychology for Cancer Tagged with: Blood Cancer, Bone Cancer, Cancer, Dying, Family, Myeloma, Para Protein, Patient choice, Positivity, Psychology, Travel, Treatment
Hello you. Is anybody out there? Sorry I have been so silent for so long; it’s been a heck of a hard eight months. That’s not to say there haven’t been some good times, some great times, times I’ve felt adventurous, happy, even peaceful. There have though, been times when I’ve thought this is just too much. Too much everything. I may have been giving this blog the silent treatment, yet in my head, I have written so many, many, times.
If any one thing had happened, gone wrong, been challenging; I would have been able to cope. Life doesn’t work that way, though, does it? One thing happens, then another, and while I get my head around those, another and another, like multiple, side by side dominos tracks; they all cascade, one by one and at the same time – bang, bang, bang.
After about the third bang…my ability to do the helpful, healthy things went out of the window. I fell of the tracks… I struggled to get back on. For a week, I managed it, then I fell off again. I picked myself up, recommitted but only for a day … and then I …gave up.
Sugar, alcohol, copious amounts of coffee, long periods of not eating, then eating crap, withdrawal, duvet days, not wanting to socialise, wanting to be on the couch with TV and the cat…all re-entered my life with a vengeance. I was no longer walking the psychologist and cancer care talk.
Except I couldn’t escape the knowing. I knew what was happening. I watched it happen. I watched everything I’d built up to support me, over the previous year since diagnosis, slip away. Despite this, somehow, I was still managing to function, to help others, to turn up at the cancer centre and be the psychologist, I knew myself to be. The cost was high. Exhaustion kicked in. Overwhelm. Then the next domino fell, and the next and another.
So, I fell off the tracks and self-care plans. I stopped walking my talk. Out went the green smoothies and in came caffeine and Pisco sours. I was in cope, any way I could, mode.
Turns out I am very, very, human after all. Who knew?
The others were a shock to me, maybe to you too.
The first set;
1. My hands stopped working.
2. Mum got cancer.
3. An internet troll joined my party.
I’m not silent anymore.
Informing your parents on your 48th birthday that you have blood and bone cancer is not a common or pleasant thing to do. In fact, it has been the hardest thing to do in this whole journey so far: let family and friends know, see and hear their pain, their sadness, their shock. Sharing my diagnosis and curtailed life expectancy with people whom I love was and is cutting to the bone.
Trying to work out when to tell and who to tell is a challenge too. I had to seek advice from the wonderful J who had recently experienced this dilemma. In the end, Hubby and I agreed we would find out more information first and did as much of that as possible over the 11th to 13th February. Then we planned to tell my parents first, followed by his parents and then my NZ besties who have known me since I was 18 years old: who I knew I could count on to cope (in their different ways), to be hopeful, practical, support me, Hubby and each other.
I realised I needed to tell people quickly as it is quite hard these days with social media and, when you have the fortune to have good friends, who wish to catch up regularly, to get on with your life if you haven’t told them. I anticipated being less available due to Chemo and recovery, fending off ‘how work was going’ related questions and having to explain why my hair was falling out etc. I just thought no shocks should ensue when I rock up to graduation in July, thinner or fatter (from steroids) and sporting new headwear. Anyway, it’s my style to be upfront about what is going on. Well at least I like to think so.
Also, I recognised I needed support: some now (especially humour) and certainly I am likely to need some later during treatment. Hubby needs support too. So, telling people seemed the right thing to do for me (though I do understand why others might prefer to keep it quiet and wait until treatment has taken place).
My parents who live in New Zealand are amazing people, so generous, kind and often overly considerate of others. They are also inspiring, energetic, wise and well educated; great mentors to others. They were firm with me in many ways when I was growing up, yet open and welcomed questions and debate. My parents ensured I had a diverse range of experiences and chances to pursue hobbies; fantastic holidays in NZ, netball, tennis, scuba, plays, ballet, musicals, art and concerts. I remember going to see Rod Stewart when I was 10 and Charley Pride and the Bolshoi. They have wide music interests. My point is, that for so many reasons I am immensely grateful for my parents and my upbringing. I am fortunate enough to have a great relationship with Mum and Dad, one that only keeps getting better. We have always been super independent and have never lived in each other’s pockets, talking once a month or so and trying to meet in recent years at least once a year. It was especially hard to tell them bad news. Especially this bad news.
Mum cried and had to move away from the Skype call. Her natural empathy for others is huge and so close to the surface, I wasn’t surprised at this reaction but it was hard to view. Dad in his usual stoic, practical in a crisis kind of way, hung in there and asked all the right questions. I did my best to be matter of fact, hopeful and clear. I was churning inside seeing the hurt on their faces. We eventually ended the call so Dad could go and look after Mum. Over the next few weeks it took a bit of convincing them not to jump on a plane immediately (imagine me sending shackles for Mum over the ether!) but in the end, they have been amazing as usual, listened to our needs and I am now very much looking forward to their extended visit later in the year. I am very proud of them and how they are coping.
Telling Hubby’s parents was not really any easier except we spoke over the phone so I didn’t see their faces. It all went a bit wrong initially as they were in the car at the time. When we suggested we wait until they were home they insisted on going ahead but then they didn’t know what was coming. When we explained, the call was stopped and started ten minutes later once they were home. I love my parents-in-law (P and T) and Hubby’s Mum. They have all been very supportive. Being visited by P and T the very next weekend was helpful and in the moment I loved T’s assumption that I would beat the odds.
The weird thing and something I really resented was how many people knew I had Myeloma before I was able and ready to tell my loved ones. My dentist and his receptionist knew because I needed his clearance of not needing any dental work before I could start a bone building drug, the beautician at the hotel we stayed in while taking time away to process all the new information and treatment options knew, when I filled out their questionnaire and she gently announced she would not be able to give me the massage I was craving. Scared of a law suit if something went wrong I suspect. She did give me a lovely pedicure and I found myself reassuring and cheering up her and her manager. Looking after others needs about my cancer was something I learned would become a regular occurrence. One I plan to avoid unless necessary and may come to be rude about as I only have so much bandwidth for looking after others’ needs right now. Sounds selfish but true; though working with a couple of private clients still appeals as it wouldn’t be about my stuff.
I laughed as J had warned me in a funny story about her partner who had told ‘everyone’ about her cancer diagnosis when Hubby came home late one night and confessed. He had shared our new challenge with his manager so he could take some time off to attend tests with me. Then ‘he’d spilled the beans’ over a beer and late night commuter trip following hours of standing on a platform and delayed trains; he’d been frustrated he wasn’t home when we had so much going on. I didn’t resent this; he needed to share but it was weird that people I’d never met and had no affiliation with, knew about my stuff before my good friends knew.
Telling my besties was also a logistical timing issue. On one hand, it was fab as S happened to be visiting from the States with her hubby and his daughter. However, it was our birthday week and I really didn’t want to tell her my news before we had been able to celebrate her birthday. This was tough as it felt like I was lying to her and not able to fully connect or spend as much time with her as I had planned to as I raced off to appointments. It was a total relief to let her know and then Skype with my other besties the next morning. As anticipated they were simply wonderful, reeling but managed well and said all the right things. Soon after I sent an email which was a much easier way of communicating my news to my close UK based friends and other special people in my life all around the world. Deep sigh of relief and a wee bit of fear followed. You never know how these things will land.
While telling others has been extremely hard: telling myself about how many years I am likely to live has been strangely easy. I did want a long life but only if it was filled with quality, mobility, activity and intact cognition. This way, with Myeloma, I strangely feel more in control and have a rapidly growing awareness of just how I might want to live life in periods of remission. Instead of living far off in the future my next five years is firmly in focus. Who I wish to spend it with, how I want to spend it, is a close second in my mind behind successfully managing treatment. I envisage kicking this cancer into outer space for as long as possible if not forever. The way I see it, there is no reason why I can’t be one of the first people to experience Myeloma as a chronic illness with long periods of remission over normal life expectancy, rather than have life limited to 8-10 years with frequent periods of hospital visits and new Chemo regimes. That’s what I’m gunning for and requesting of the Universe. So, you see I still want to be special, but I am being much more specific about, how I wish to be special, when speaking to the Universe.
Illustrations: Sapphire Weerakone
Copy Editor: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.