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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
Music: Jump Around by House of Pain, Got Moves Like Jagger by Maroon 5, Funky Town Gangsta’s Paradise by Coolio, Gin and Juice by Snoop Dogg, Whatta Man by Salt’N’ Pepa (1994!!!). Many many great tracks from the past, particularly hip hop played at the end of the ski/sightseeing day, on the way down in the gondola, via JWL’s phone and with her knowing all the lyrics – seriously impressive or an affliction as she calls it!
No Chemo, No Hospital this week – yee ha!
Mental Health – Nourished by great friends, awesome views, fresh mountain air and being away on a holiday with my hubby (our first, over 5 day, non-New Zealand holiday since 2009, much needed).
I do not advocate travelling abroad during induction chemo treatment. A body’s immune system is weakened during chemo and there is a higher risk of infection. However, in my case, there were extenuating circumstances so a trip to Canada was my idea of the perfect accompaniment to my treatment plan!
Missing Out or A Dream Realised?
Standing on top of a mountain at Banff and Lake Louise had been a dream of mine for many, many years. I had the good fortune to go to Vancouver, Whistler and Blackcomb in 2003 and absolutely loved the experience; the only thing missing at the time was my new lover Mr H, who I had left behind in London. So, as soon as was possible, we planned another trip.
In 2009, a great bunch of old and new friends gathered from all over the world in Meribel, France for a week of skiing. We had a blast. We’d always talked about doing a repeat; State side or in Canada. I had planned it once before in 2012/13 and then cancelled. It was an awful time; I felt like I had really let friends down. We were almost ready to book and then for responsible financial reasons we pulled the plug.
That was not going to happen again. So, we waited until we had the funds, then contacted S & J to see if they were keen on joining us in Banff and Lake Louise. They said yes. We set a date. Easy. We put out the ‘all points invitation’ to the 09 ski bunnies and P & G took the bait – they were in! Fabulous! Regretful “can’t come this time” messages flowed from the rest of the peeps; we quickly knew the score. 6 of us, perfect. We booked. We started getting excited. This was my big post doctorate reward. Sure, it was expensive but it was worth it. I even booked premier economy flights on the return for a bit more comfort for our weary post ski bodies. I couldn’t wait.
Then Myeloma struck. Would I have to cancel again? I yelled in my head “I WILL NOT let everyone down again. That is just not me; that’s not how I roll”. Then more quietly to myself, “Ok so let’s get real, girl; you may have to”. One consultant was silent when I explained about our trip of a lifetime and asked, “was there any way we could make treatment work around it please?” I promised not to ski. I stated, “it would be such good mental health” and “It would give me time to catch up and process everything that’s happened since January”. The other consultant was “yes, we can work with that” and pointed out my trip was timed for the non-chemo week of cycle one; “just be back to start cycle two on the 3rd April”. YAY!
THANK YOU, Universe.
The main mission was to make sure I didn’t get any colds or infections right before or while I was away. Dr L wrote me a fantastic letter for obtaining travel insurance which pointed out that I currently did not have any complications and wasn’t go to die on anyone in the next 12 months (take note British Airways and Canada Customs). By the way my extenuating circumstances are that I’m young, fit and healthy with no kidney or otherwise damage despite having Myeloma. If the opposite was true, I think travel abroad would have been foolhardy, and unfair to the clinical team trying to help me get better.
After eight hours of wearing double masks (my ears were a bit sore by the end of the flight) and tight leg compressors to prevent deep vein thrombosis, being grilled by Canadian customs who reacted to my mask, and three times interwove asking me when we were leaving into the conversation (presumably to check I wasn’t coming in to their country to seek treatment), I made it to Canada with Simon.
Being on top of the world, breathing in the air, the views, the company– it was like nothing else. I even coped with not skiing though it looked amazing; good base, snow overnight most nights, gorgeous sunny and high sky days and the slopes were not busy at all compared to European pistes! Oh well, next time. Bring on remission.
“Caribou, Caribou” was the cry from J. “Look out of your window!”. Si and I raced to our balcony and watched four Caribou saunter down Fox street before turning into Cougar Street. (I love the street names in Banff; Muskrat St, Bear St, Squirrel St, Antelope Lane, Lynx St, Wolf St..). The guys grabbed cameras and went to capture the perfect pic.
They were a beautiful sight and one that couldn’t have been organised better by a Banff tourist board. We discovered later that they were not Caribou at all, but Elk! (Hence the title for this post). They did not seem phased by human beings being on their patch. Fabulous to see. We wondered what other sights we could rack up while being here and hoped for Moose, Wolf and Bear!
The six of us piled into HMS Sasquatch (our nickname for the monster of a vehicle we hired) and headed up to the slopes, went sightseeing to Lake Louise and Two Jack Lake, and took on liquid refreshment at the fabulous Fairmont and Post Hotels. It was like living in a fairy tale or Narnia, snow covered trees, beautiful light, photo opportunities in every direction.
P (obsessed with bears) gave us the report. Apparently just up the road, grizzly number 122 (aka the Boss) had woken from hibernation early. Given last year he munched his way through two other bears and a sheep on waking – I decided to stay well away from him! P on the other hand seemed keen to race to the last known sighting spot!
Tears and Mindful Thoughts
Tears one morning. They’re close to the surface and hit me when I’m least expecting them. They tend to come when someone says something lovely or is particularly kind. This day was a bit different; “I don’t want to die” flashed up, very quickly and passed, but it was there. It was a bit of a shock though gone in a moment. A thought passing through. Like all other thoughts. Coming and going. To be observed. A thought not worthy of attention, of being ‘bought into’, unless it was a thought that served me. I let this thought go. I took a deep breath. Mindful. Grateful.
Everywhere we went in Canada we were met with friendly, helpful people who adore being in the mountains (including a lot of Kiwis and Aussies, many of whom were on their second season). The service was great. Every café had gluten free menus and were more than willing to help meet diet needs.
My decision to travel felt reinforced and validated at every step and no more so than when sitting in the outdoor hot pool at Banff’s Fairmont Palliser spa looking at mountains in all directions, drinking in the fresh air and being pampered to the hilt. I am so glad I went and didn’t do what I would have done in the past; think “I had better ‘be good’, ‘do the right thing’ and if the standard medical guidance is not to go abroad, then ‘I shouldn’t go abroad’.
Knowing I may have a short and finite time on this earth helps with decision making and helps discard some old ways of being and thinking. It has made me check in with whether I am spending my days in the way I wish to spend them and notice who gets to have a say in that. Going to Canada was one of the best decisions I have ever made for my own mental health; taking all the precautions possible to keep myself well, while away, was the necessary and balancing price to pay for that decision. No regrets.
Mental health and mental strength comes in many different forms. Yes, it can be about being stoic, practical and positive in times of crisis. It can also be about taking time to examine what it is we need, in and of this moment, and to consider honestly, what is stopping us from having that need met; a fear, a lack of voice, a habit in the way we think or have always behaved, in similar situations?
It doesn’t matter what we have thought or done in the past; we can always choose to think and behave differently now. Isn’t that what learning life’s lessons is all about? Learn, then do something differently and therefore experience a different result.
Cognitive Behavioural Therapy (CBT) examines links between and cycles of; thoughts, feelings, behaviours and physical sensations. It helps us understand whether the cycles are helpful and serve us well or are unhelpful and no longer serve us, our values, healthy function or goals. CBT strategies such as challenging our thoughts in a constructive, non-judgemental way, help to weaken and break the links between unhelpful thoughts and behaviours. Ultimately this leaves space to create supportive, useful links between thoughts and behaviours. These usually result in more manageable or desirable feelings and better physical sensations.
In this case, I looked at the links between my thoughts about ‘doing the right thing’, how that made me feel (constrained, resentful, mixed with good), my resulting behaviour (to do something I didn’t really want to do or forgo something I had planned for myself i.e. not travel) and the physical sensations (tense). I gently challenged this cycle and the assumptions that underpinned it such as ‘there is only one way’ and ‘you must always go with the first option medical teams advise’.
I thought about what I needed (to go to Canada as planned), weighed up the risks (my otherwise good health with the risk of getting an infection) and I decided I could manage and minimise the likelihood of getting an infection by; caring for myself well, not letting myself get cold, taking all precautions such as double masks when on the plane and in public areas, and not skiing.
I then chose to think and behave differently from the constraints I have applied in the past. While I would normally do things by the book when others in authoritative positions are involved, I decided, this time, that I knew what was best for me, negotiated it with the medical team and reaped the benefits. If I had cancelled and stayed home, I know I would felt disappointment, anger, resentment, bitterness at the Myeloma and sorry for myself.
This way I didn’t experience any of those unwanted, negative feelings.
Instead, I felt intense happiness, empowered and ALIVE, ON TOP OF A MOUNTAIN!
Images and Content: The Fun and Fabulous Ski Bunny Travel Companions; S & J, P & G, & Si.
Illustration (Grizzly): Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.