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.
Wonderful amazing news Janine! Let’s do that sunny Sunday bike ride!!
Hi Janine, Your posts make me laugh and cry. You’re the bravest person I know. Keep on being you. Lots of love and get well germs, Jude
Wow. Great news. I am in awe of your fortitude and resilience through all of this.
I would like to add my own “Thank you” to you. I live with someone who has cancer and I needed a reminder of just how he is feeling. Having read your very eloquent description of how you actually feel on a day to day basis, it has reminded me of how he must feel. I am guilty of ‘forgetting’ how it affects him and I needed this reminder.
So ‘thank you’ to you and may you continue to win this constant battle. Xx
My turn to say, Wow. Thank you Allison. I am so glad the blog helped. Please remember to be kind to you too. ‘Forgetting’ how it affects him, treating him as you have always done, may have been just what he needed at that time. Take care of you.
Janine I wish you all the best for this week and 2018, you have been a super hero through 2017. Your a super brave, inspirational lady to all of us, thinking of you both. Love Kerry xx
Way to go J9! Onwards and upwards! All my love Katexxx
Dear friend, you move me to cry smile laugh and sing! I’m amazed by your courage and vulnerability. This is truly good news. Xx
What amazing news darling J.
Dear Janine, hello. Cancer (I want to call it the C word because it’s foul but I know it’s more than that), has infiltrated the lives of people I love/loved, cared about and I know they are incredible , beautiful people just like you! I am astonished with C word and want to blast it into space but even space doesn’t deserve it right? Your blogs are full of you and your life and wonderful. Your honesty is the weapon and in my minds eye I see all the goodness oozing from you to all around.Thank you for continuing to… Read more »
Thank you Sila, your words are very kind. Happy New Year to You and ‘your boys’.