January 10th, 2018 by Janine
Did I change career over the last month of 2017, become a lead actor in a thriller? This thing keeps creeping up from behind me, above me, beside me, from below, yelling BOO! It sends my cortisol levels sky high, makes my heart pound and brain race. I’ll be tidying, reading, sitting, walking down the street, thinking about something or standing in a queue, essentially minding my own business, when WHAAAHHH! There it is.
I recognise it straight away. Sometimes, I even feel it sneaking up on me yet it still scares the living daylights out of me. It’s a shape shifter, a dark cloud and an amour piercing arrow. Either way it makes me gasp, scream, crash, sleep, feel defunct. It pulls the ground out from underneath me, leaves me doubting the paths taken and decisions made that previously seemed acutely clear and necessary. It’s an expert protagonist in this production. It doesn’t take direction. It’s a master tease, dangling hope and snatching it away, reminding me, it’s in control. I’m the newbie on set with no Daniel Day Lewis, Dame Maggie Smith or Christian Bale style mentor to guide me. In the meantime, it picks another corner to hide in and I jump through the roof with the next BOO!
It’s not cancer; it’s fatigue.
Fatigue and Fear
Fatigue, is really getting to me. I don’t get enough sleep. I wake every two hours.
I’m also scared. Though I do know I’m alive!
I’m scared of dying young. I’m scared of missing out. I’m scared of making a poor decision; making my condition worse or accelerating its progress. I’m scared of being a burden. I’m scared of not being enough for my husband, of dragging his life down (all the active plans we had). I’m scared he’ll leave me. I’m scared I’ll ask him to leave me, to go off and find someone else, to have a life with more fun, that doesn’t involve or revolve around a wife living with terminal illness. I’m scared that I don’t and won’t again resemble my sense of who I am; an active, full of life, adventurous person who stands on mountains, travels everywhere, is strong, independent, sensual. I’m plain scared.
Fatigue and fear. I feel them. I get paralysed by them. I think about them. And, yep you know it by now (if you have read my earlier blogs)..…
That’s OK. It’s OK that fatigue and fear do that.
It’s natural. I am living with cancer and have had a gazillion sessions of Chemo during 2017, numerous biopsies, scans, endless blood tests, new challenging experiences and learnt a new language of medical intervention. However, just because I face big challenges or can find myself embroiled in fatigue and fear, doesn’t mean I must let these factors take over this whole blog.
I can do a bit of my own shapeshifting, respond rather than react, slowly little by little unlock the paralysis and pull on a cloak of ‘sitting in all the good things’. I can start now. I’m not ignoring fatigue and fear. I’m not denying their existence. I am denying them their take over plans. I am choosing to focus on something else right now.
Today, this blog is going to be about a huge THANK YOU and more Good News!
Belated Merry Christmas and / or Happy Holidays and Happy Happy New Year everyone. Thank you ALL, for reading my blog, for subscribing, for commenting, for sharing it with others who may have an interest in the journey, an interest in what has worked for me so far in managing cancer or an interest in the psychology tips and experience I have incorporated.
Thank you too, for all the wonderful cards, calls, skype time, meals together, moments and best wishes my hubby and I have received over the holidays. They are so appreciated. Every single one.
I firmly believe that all your support and encouragement has contributed to my good news. I have felt loved, helped, contained, hopeful and normal at times when things were far from normal. THANK YOU from the bottom, to the top, of my heart.
THE GOOD NEWS.
My December 2017 results are great. In addition to those mentioned in the previous blog, titled 48, my recent pet scan, bone marrow biopsy and MRI have overall been extremely positive. Of the four lesions I was diagnosed with, only ONE near L5 in my lower back took up glucose during the pet scan, indicating active myeloma. Even this lesion took up significantly LESS glucose than it has done in previous scans. Yeah Baby! How good is that?!
I told those tumours they were wasting their time hanging about and I am taking this as evidence that they have been listening and reassessing their landing page! It is wonderful to read the line in the report that said ‘There are no obvious focal uptake abnormalities in the brain’!! Let’s hope no un-obvious ones decide to make an uninvited guest appearance. They’d be about as welcome as a Harvey Weinstein type right now!
There’s more. The bone marrow biopsy did not show any active Myeloma in my blood or bone and, wait for it…my MRI did not show evidence of any new lesion/tumour. Yee Ha!
I do have one caveat; I have some mild degenerative disc disease and loss of height and hydration between vertebrae in my spine; my back is looking a bit older than my years. It is unlikely that I can particularly do anything to repair damage. I can exercise and ensure by back remains strong, doesn’t antagonise the nerves around L5 and otherwise prevents my degeneration from becoming worse unnecessarily. I will check with the physio about what else, if anything, may be possible. It was also wonderful to read ‘the spinal cord returns a normal signal and the brainstem structure is normal’.
Being pragmatic, I am remembering that Myeloma is tricky. It will come back. It can also be a bit lazy and not show up at times in these results. It can take a rest or be working out how to manifest itself in a new way in my blood and bone. HOWEVER, TODAY…
I’m looking on the bright side of life! (How many of you began singing this line? I can’t help myself)
A helpful position to launch from; I start 18 more months of Chemo this week – the maintenance phase on the clinical trial. Let’s see what this brings.
This is infinitely easier to do with wonderful friends, family, readers, well wishes and my so far ‘beyond amazing’, hubby. I appreciate all of you. I really do.
BRING ON 2018.
Images; Hands by M & T. Me (February) by Dad. Me (December) by Me. Thank you image by Tumiso @ Creative Commons (free for commercial use, no attribution required);
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Results Tagged with: Biopsy, Cancer, Fatigue, Good News, MRI, Pet Scan, Results, Thank you
February 6th, 2017 by Janine
The last ten days have been a whirlwind of hospital appointments, even on a Sunday (and people moan about the NHS!). A bone marrow biopsy, a comedic event with four people in a tiny room, a lot of over-heating, Simon nearly fainting, the student nurse almost fainting, the blood aspiration having to be done twice, my counting the stitches on Si’s jeans around his crotch as that was where my eye line was and I needed a distraction from the drilling going on in my hip, the word ‘bitch’ slipping out accidentally and the nurse laughing her head off, her having to put her leg up and brace to get enough traction as I pulled against her to get a tiny piece of bone and some bone marrow out of me. Phew. All exhausted but amused. I was pleased that was done. Yes, it was painful but not too bad. I’m not going to volunteer for one every week.
Then a pet scan where I willingly allowed a stranger to inject me with radioactive glucose, so radioactive that they suggest you don’t go near pregnant women or children for 6-8 hours. I LET THEM DO THAT! Anyway, you wait for an hour, you’re not allowed to do anything, even read a book as every muscle movement attracts the glucose. The point of the pet scan is that the glucose settles where the most bone damage is and then shows up in the scanner. I wondered what the grandmother on the tube thought later that day when I sat down next to her on the tube, opposite her daughter who was bouncing a toddler on her knee – then I remembered and quickly moved away. She caught my eye, seemingly wondering why I had moved to stand when there were so many empty seats. I don’t think she needed to hear ‘Hey, I’m radioactive!’ It’s ironic after all the years that Simon worked on a Nuclear Power Plant site and had to wear a full protective suit down to pink knickers when he went near the remaining radioactive rods and waste – I’m the one that is essentially poisoned with the stuff! Still all in a good cause and the Pet Scan was nothing compared to the MRI.
Next up for my sins on a Sunday, a full spine and head MRI and then a full body MRI. Man alive, those things are loud, even the music through headphones had minimal effect and it stopped at times. Need to remember to take my own ear plugs next time to wear as well. Hopefully (or I’ll ask) the music and noise will be turned off when the staff need to speak with me. Seriously though it was like having an angle grinder and a jackhammer going full tilt inside your head for 30 minutes plus. Not pleasant and almost unbearable. Come on amazing medical scientists; you’re clever enough to design better and better MRIs now make them silent please!!
The ECG and Echocardiogram looking at my heart were much tamer affairs. I was in and out within 15 minutes with no more than cold patches with electronic nodes in them attached to my chest and cold Ultra Sound gel there too. So, all good. The results too. Nothing wrong with my ticker.
Over the 10 days of tests I met up and spoke with friends. It was so hard not to say anything. One of my values is to be open and honest, so much so, that I probably provide ‘too much information at times’. This though, felt like ‘an elephant in the room’. I felt like I was lying and to relieve the feeling on two occasions I mentioned I was helping a friend with cancer at the moment. That friend was ME! It was strange when they asked how my friend was feeling yet strangely helpful too because I could answer truthfully. Being a friend to myself is an image I like and will try to remember and come back to as this journey zooms along. I don’t want to burden my friends yet if the shoe was on the other foot I would hope my friends would tell me, and let me know how I might help. I still hope that even when they will know I have my own big stuff going on. Unsurprisingly, friends responded brilliantly when I did find the courage to let others know. More about that in another post.
Next step – second consultation and understanding what these tests were saying. I resolved to channel my long-term possibility of being clever, clear and calm as we went in to hear the diagnosis.
Illustrations: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Pre Diagnosis Tagged with: Blood Cancer, Bone Cancer, Bone Marrow Biopsy, ECG, Echocardiagram, MRI, Myeloma, Pet Scan, Radioactive