February 12th, 2017 by Janine
Oh sh*t, what if our new nephew, baby N arrives on the same day I get diagnosed? Hubby and I agreed that would be awful! My follow up appointment was booked for Friday 10th Feb and we willed the Universe that our Sister-in-law gave birth before then or after then. Any day EXCEPT diagnosis day!
Second Consultation
It wasn’t Dr K this time which surprised me. Instead Dr R calmly, again in a matter of fact way, confirmed I had Myeloma. He explained it is incurable yet treatable. I knew from experience that most people do not hear much of the consultation once they have a diagnosis confirmed. Dr R reassured me it was fine to record our conversation and that we would have this conversation a number of times over the next week while I got my head around everything and asked any questions I may have. Specialist Nurse D with the lovely reassuring smile was present also and he was going to be my point of contact throughout. It was nice to meet him straight away. I remember thinking I need to be a strong clear voice for myself without becoming someone nasty or someone I don’t recognise.
Dr R asked me about pain and I struggled to answer, I’ve lived with minor aches, pains and niggles for so long I can’t distinguish when, how long and how bad. I couldn’t think more clearly about this until we were out of the appointment… and remembered I haven’t been able to sleep on my left hand side for ages, one to two years Hubby reckoned, I didn’t realise it was that long. Dr R seemed to expect me to be in more pain as he explained the BM biopsy and pet scan confirmed that there is evidence of bone marrow damage in my left shoulder (ha- my creaking and clicking it that annoyed you so much Hubby!!!), my sternum, my middle back T7 and lower back L5 vertebrae. L5 is the bit Dr B is most worried about – if it deteriorates it can damage my spinal cord (oh yay!). It’s not enough to have sucky cancer, I have to have the risk of paralysis too. Lovely. So nice for Hubby. Didn’t I read somewhere sarcasm is linked to intelligence? Then I am effing intelligent! However there are things to celebrate – my lungs and kidneys are not showing any damage and my anaemia was only slight. All of these can be bad with this condition though most people are twenty years older when they get diagnosed.
Dr R wants me to start treatment asap to get the spinal damage under control which could apparently happen as early as tomorrow (!) so chemo here I come. Treatment choices were either standard care (one set of drugs) or the clinical trial CARDAMON (another set of drugs). I pushed Dr R for a prognosis, I’m quality over quantity kind of gal so wanted to know how much quality I could expect, hope for and create. I heard him say first line care usually buys 3 years (gulp) of remission before relapse and then there are more sequences of drug treatments that buy more (though less than the first) remission time. If treatment is successful I can live for another 8-10 years. SO PRETTY SHIT REALLY. In fact, the median shown in current evidenced based research is 7 years. I asked to be referred to a psychology-oncologist (thinking man I am going need one, not right now but sometime in the future when I feel less chilled about all of this) and he said yes straight away and that there were two working closely with their team.
Support and Due Diligence
I didn’t really react to the prognosis, I still felt strangely calm. Not in denial. Just in the practical project manager zone of doing what needs to be done. Went to Macmillan (awesome charity supporting people living with cancer) at KCH afterwards. I’m so grateful for my little bit of knowledge of this field. I knew of Maggies, drop in centres for people with cancer, their families and those effected by the big C because as an assistant psychologist I had helped lead Mindfulness courses for people in remission (another irony?) and I have raised money for Macmillan in the past. I knew there would be calm, info and friendly people there. T was exactly that and very helpful. I tried on a blond wig for kicks but Hubby wasn’t impressed! I’ve also been talking about money all day – it’s weird but seems to be my fixation – worried about how we are going to get money for stuff…(covering my no income while I’m on Chemo, drug costs if wanting something NHS doesn’t offer, the eventual palliative care costs). Anyway that’s a whole other post.
Spent my birthday and Valentine’s day doing the due diligence of getting second opinions and care options in the private sector. Hubby was fantastic. I’d google the care centres and he’d call them asking for an urgent appointment. He was so awesome because he’d say what their attitude was like on the phone and not just the practicalities; we dismissed some clinics very quickly! The one that was the best responder was the one I knew about already. A friend J had been there for her breast cancer treatment and was positive about the experience. It felt so containing that they had been amazing on the phone and had offered an appointment on Monday morning. Felt even better when Nurse L emailed to confirm straight away and emailed me back later at 8.30pm (on a Friday)!! Not only saying the test results is sent we’re perfect for their needs but saying that she hoped I had enough pain management. Awesome service which continued in the consultation where they endorsed the treatment options offered by KCH and offered another to be tried later. They welcomed my staying in contact and asking any questions as needed. Which I have done and so far no charge has arisen other than for the initial meeting. Safe hands me thinks.
J said all the right things and was beyond supportive. I am intensely grateful to her especially when at this point I need help to make decisions and was yet to let my friends and family know. I was on such a clock for a decision which I wanted to share with them and needed to keep my head clear while I made them which may not have been possible once speaking to all the others that I love.
We had champagne to celebrate catching the Cancer and the parts of me it hadn’t got to yet. Watched a star trek movie, fell asleep during it exhausted and finally went to bed at 1am.
Hubby was very sad, teary, upset, practical, awesome awesome loving and awesome. We are talking about who to tell and when, working it all out. He said such a sweet sweet thing to me, It is unfair, ’You’re one of the kindest people I know’…I cried.
Baby N
Fortunately the Universe is simply amazing and Baby N arrived on the 9th Feb and we went to see family and Noah on Sunday 12th. My father-in-law (very astute and I love him to bits) mentioned to his wife on their way home that something didn’t quite seem right about Hubby and I though they didn’t think it was about our past difficulties with having our own family. He was on the money of course, as we had just spent two days away from home in a hotel trying to process the prognosis, pouring over all the Myeloma literature we had been given and wrapping our heads around treatment options. Decisions were needed, fast. I remember holding Baby N, thinking he was utterly adorable and that my Sis-in-Law was beautiful and amazing. I also remember thinking my hands have been aching badly all day, I’m holding him very stiffly, god I hope I don’t drop him. I need to hand him over but I can’t yet, a little while longer. One dying young, one amazing arrival. Cycle of life. These were thoughts in my head. I look back on the photos from that day and Hubby and I look happy yet extraordinarily tired. We were so glad that we went though, met everyone and shared that fabulous moment.
Diagnosis
So unequivocally, I am now a person living with active (symptomatic) IgG Kappa Multiple Myeloma and produce an abnormal para protein which is normally there but has managed to over excite itself, not die when it should and has now bullied all the other cells out of the place. I have damage throughout my bone including one to my spine that KCH are concerned about and one to my sternum that the private centre is particularly concerned about. Urgent treatment is required so I don’t end up with breathing problems (sternum) or spinal cord compression, paralysis and frankly even earlier DEATH.
I found myself writing letters to friends based overseas in my head, saying ’Don’t come to the funeral, it’s such a long way….’
Acknowledgements:
Copy Editor: Stephanie Kemp
Image: Photo by DAVIDCOHEN on Unsplash
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Diagnosis Tagged with: Anaemia, Blood Cancer, Bone Cancer, Bone Marrow Biopsy, Cancer, CARDAMON, Chemotherapy, Chronic Illness, Clinical Trial, IgG Kappa, Incurable, L5, Myeloma, Para Protein, Private Cancer Care, Prognosis, Relapse, Second Opinion, Spinal Cord Compression, Sternum, Survival Rates, T7, Wig
December 9th, 2016 by Janine
I’ve always liked to be special but this is taking it a bit far. 4800 people are diagnosed with Myeloma every year in the UK and now I’m one of them. I didn’t think I’d be saying that. Well, actually, I did think I’d end up with cancer at some stage; most people do eventually don’t they? It is in my family…but then I didn’t think I’d get it until much later. I certainly didn’t think I’d get a cancer that is more unusual than others (15% of blood cancers, 1% of cancers generally) but, hey, I did say I like to be special.
I’ve chosen a cancer (or its chosen me) where usually a person is male, over 70, of African origin and instead I’m female (hurrah!), under 50, and white. How is that for ironic? I tell you… be careful what you put out to the Universe because the Universe delivers…maybe asking to be special wasn’t such a great idea! Seriously though, this is one interesting cancer and I found myself kicking into scientist project manager mode as I ingested as much information as I could get about this new presence in my life.
Friends have asked: how did I find out? What had I noticed?
Do people ask this because they’re scared they have an illness they don’t yet know about? Or are people just curious? Are they nervous about the seeming uncontrollability and randomness of an illness striking? We never think it will happen to us, or our good friend or our family member but it does. Illness happens to good people, bad people, people people, every day. Some illness may be preventable, you know, the usual stuff about stopping smoking, eating well, exercising. Frankly, if you don’t do those things you really are making it much harder for your body to keep working well for you. Otherwise, illness just happens and the why is so often still a mystery.
Maybe my getting myeloma is like a metaphor for those of us who are so driven, organised, high achieving, generally healthy, and happy, who always want more, crave growth and development, yet simply cannot control everything. We cannot eliminate uncertainty and must learn to ‘bounce’, flex and sway in the wind if we are to cope with life’s little and ginormous surprises! For all you control freaks out there (you know who you are and I love you!), I get it, I do. I like to plan, organise and manage my way to eliminating as much uncertainty in day-to-day life as possible (we even have apps to help make this happen these days) and then demand and embrace the uncertainty, spontaneity and adventure while on holiday. When it boils down to it though there is only so much we can control and that is OK. Life is meant to be this way; uncertain (spice of life and all that) and we can learn to cope well.
I knew something was wrong. I’ve known for years.
BUT…I kept doubting what I knew because all the specialists, GPs and test results over the years had reassured me everything was fine.
Except one, a natural killer (NK) cell test that I’d had during IVF treatment (another story). Even then no one mentioned that the presence of aggressive NK cells might indicate something nasty was going on, something other than my body being unable to let pregnancy cells implant properly. When I got this result back in 2009 and it was repeated in 2012 (with increased NK aggression levels) I knew something was wrong with my immune system.
I just didn’t know how serious it was. I also didn’t know what normal feels like, though I strongly suspected that most people didn’t have the trouble getting out of bed that I did, feel frequently achy, need regular Saturday afternoon lie-downs or constantly feel like their adrenals were maxed out. I often thought of the wonderful, amazingly energetic women in my life who appeared to have energy to be super-mums, triathletes, Tour de France-type cyclists, mountain climbers, sailors. I’d think: their bodies can’t feel like mine does everyday, can they? Then I’d look at the stress I always injected into my life; taking on jobs that were often bigger than me with steep learning curves each time, doing a masters and a doctorate, striving to work out a minimum three times per week and think, well, I bring on my low energy by my lifestyle choices.
Recently though, having finished the doctorate and chased it with a long break in New Zealand, I started working from home at my own pace on academic and exciting business projects. I had no reason to feel low energy or low mood or slightly and occasionally breathless. But I did feel these things and I didn’t understand why. I kept thinking, I’m 47-years-old for goodness sake! I shouldn’t feel like this! I had mentioned I had some slight breathlessness to Mum who insisted I get it checked out. So, when the offer a free NHS Health check for over 45-year-olds came through the post, I booked the appointment immediately and to see the GP on the same day.
In fact, it had also crossed my mind that my symptoms may be to do with becoming peri-menopausal. I thought, if so, it would probably be prudent to request a test to get a baseline of all my hormone levels so the GP and I could monitor development and make more informed decisions over the next few years. Sounds all too sensible when I read it back like this but actually, it was the lady in my local health nutrition shop that had suggested this, after I explained my mood had been a bit up and down, I’d been feeling hotter than usual (heat not sexy unfortunately) and my heart had been racing and loud. This, coupled with a dip in my energy levels and a marked breathlessness during the previous week’s netball game, made me ignore the locum GP’s stress and deep sighing at my list of discussion points.
I asked her to look at all the niggly, singularly minor ailments I’d had over the years and consider them as a whole, please. I explained I was sick of putting up with the niggles and it didn’t make sense to me to have them; something more fundamental about my immune system must be underlying it all. To her credit, she looked at the IBS, hypoglycaemia, skin conditions of vitiligo and keratosis, waxing and waning energy and mood levels, unsuccessful IVF, breathlessness and past glandular fever among other things and ordered a set of tests that had not been ordered before.
I couldn’t be more grateful to her.
I couldn’t be more grateful for my Mum and the lady in the health food shop whose name I must find out.
They have extended my life.
Acknowledgements:
Statistics: Myeloma UK. www.myeloma.org.uk
Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler are among some of her many talents!
Editor: Stephanie Kemp, for reviewing my first post and helping me keep tenses under control!
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Pre Diagnosis Tagged with: Cancer, Fatigue, Immune, Myeloma, Psychologist, Psychology