women in woods
February 12th, 2020 by Janine

I listened to an interview with best-selling author Marion Keyes today and she talked about writing emotional landscapes.  This is a wonderful phrase; it captures the many random thoughts I have about life, being human, living with cancer, with chemo, with uncertainty.  Random thoughts, the theme for this blog, a collection of moments from the last two months where thoughts appeared in my mind as I sat, walked, waited, tossed, turned, fumed, cried, ached, appreciated, smiled, laughed and loved, always loved.

 

Music

DJ House Music

House music is on my mind and in my ears…though the Brighton weekend for clubbing was a bust – great weekend – we just didn’t find a stylish club with fab house music.  Our guys went ahead to do reconnaissance.  They didn’t even make it inside one club. A group of people came out (not fast enough according to them) saying very loudly how sh*t the club was, dark, dingy, crap music…needless to say we abandoned that idea.  Fab friends made up for clubbing disappointments.  After all, we are fortunate enough to live in one of the best club cities in the world so maybe we’ll stay local next time!

 

Chemo Update

Velcade Toxic

The chemo regime called VTD is different this time, cannulation monthly only – yippee!  The weekly injection of Velcade isn’t so bad.  I take one dose of anti-nausea beforehand and haven’t needed anymore anti-nausea drugs afterwards so far.  I end up with a little localised bruising.  The drug kicks in fully after about 36 hours…funny sensations, aches, pains (all bearable) in my bones…I visualise Myeloma shrivelling and dissolving. 

The Thalidomide seems to impact my quality of life a lot more than the Velcade.  Yes that Thalidomide, the one that causes horrible side effects for foetuses.  It is no longer given to pregnant women but was discovered to have a positive impact on cancer, see here),  The daily 80mg dose knocks me out and I feel tired ALL THE TIME.  The stuff is toxic.  A nurse who first administered the pills to me was gloved up and handling it like it was a hot potato, doing their best to avoid all contact with the pills.  I wondered what the hell I was about to put into my body!  

Even the weekly steroid doesn’t combat the lethargy (but it has made me eat more and I’ve put on 7kg that I don’t want!).  Early morning energy is now a distant memory.  The other unwanted side effect of is my stomach is like a horizontal crackerjack.  I take Thalidomide and out my stomach comes, tight and large, making me look like I have consumed a whole loaf of gluten filled bread or more ironically, I look pregnant. On top of the VTD chemo regime I inject nightly Clexane, a blood thinner to stop the Thalidomide from causing blood clots. 

Oh the layers…take this because it helps this but then take that because to take the first thing you need that thing to stop the bad things of the first thing….and round and round it goes….Still, the regime is working and the presence of Myeloma in my blood and bone is dropping again, down from 17 to 11.  Hopefully it will continue to fall.

 
Creepy Chrimbo

Empty Hospital Corridor

Doesn’t it seem an age since Christmas already?  I nicked named last Christmas, Creepy Chrimbo because the hospital was strange and very different from usual.  My chemo didn’t stop just because it was Christmas eve or New Year’s eve.  I am grateful for all of the hardworking nurses who managed to fit in everyone’s treatment to a short week so Christmas Day could be the best it could be. 

Hospital halls were eerily empty and I could hear every footstep I made ringing in my ears. I felt like I was in an Alfred Hitchcock thriller or that Jack Nicholson’s horror film grin would appear around a door jamb any second.  The sense of being alone was made worse because the Chemo Unit is down the end of a long corridor, I often feel like it’s ‘shoved away’ with the renal unit, out of the way because somehow we are toxic and ‘they’ don’t want us near others, the healthier people, in case we contaminate them somehow.  I know this is silly but then maybe not?  Chemo is after all, hazardous, noxious and needs careful handling so maybe it is purposeful that our unit is past the research centre and beyond the other wards.  I know it isn’t helpful to think this way, a little negatively, like we are not really wanted and are merely being put up with somehow.  The NHS staff certainly don’t perpetuate this story; they are friendly and welcoming.

Just before I was alone in the long corridor I noticed a woman on a hospital bed being wheeled towards the renal unit.  I try not to look at people when they are being wheeled around in public view, I often think it is fairly undignified yet obviously a necessary event in hospitals.  I wouldn’t want to make eye contact with anyone if it was me on that bed.  I’ve noticed some patients close their eyes, put a pillow or blanket over their face – possibly to gain some privacy in a very public space so I try to offer it by glancing away quickly.  Though if someone in a bed looked directly at me I have decided to smile and hope they find it reaffirming, reassuring, and non-judgemental somehow. 

This woman was on her side, looking away.  It was after 5pm on the 24th and I wondered what her Christmas would be like and what her story was.  Would she be sad to be in hospital over Christmas Day?  Did she have family who wished she was with them? Would they visit her?  Did she want them to visit?  Or was she secretly relieved she had the best excuse to not ‘do’ Christmas this year, to rest and focus on herself instead.  Or maybe she didn’t celebrate Christmas at all and instead would be disappointed to be missing out on holidays.  These thoughts vanished as I found myself alone in a grey corridor with white walls, in silence where there was usually the hustle and bustle of nurses, doctors, patients and public, trolleys and endless supply boxes.   

The silence strangely continued outside where the usually busy main street was devoid of cars and people.  This reminded me of the contrasts of Christmas, wonderful, fun, exciting for some and challenging, triggering, or lonely for others.

 
Repurposed

Dog Wormer Fenbendazole

The new buzzword popping up everywhere is Repurposed.  From transforming old furniture into something new or turning one person’s rubbish into another person’s useful item, and now, the latest thing is repurposed drugs.  Essentially, using drugs already approved by the medication regulators for treating non-cancer illnesses, to treat cancer or be added to existing cancer treatments to increase effectiveness. 

When I first came across this I thought it was yet another cancer fad because the headlines gaining traction were about repurposing dog wormer! Yes you read correctly.  Cancer patients were shouting out about how an anti-parasitic drug called Fenbendazole usually used for deworming dogs had cured their cancer!  I was very dismissive. I don’t want to miss out on something that works but I don’t want to get caught up, distracted, invest time and precious energy into the cancer equivalent of the latest diet or beauty treatment. Dog dewormer seemed to be more in the fad than the credible category and on par with ‘take turmeric’ and your cancer will vanish.  While I am a big fan of turmeric and curcumin and take it daily, I do not believe for one second that it (or Fenbendazole for that matter) will single-handedly cure my cancer or cure anyone’s cancer. 

But then I got thinking, had I been too quick to write off this idea?  Medical discoveries come in many forms, (like the Thalidomide scandal) from unlikely places so why wouldn’t it make sense that a medication that addressed one illness, whether in animals or humans, might also be found to have anticancer effects?  I took another look and found this. Click Here

I googled some more (as you do) and came across some other interesting stuff…

Trials and projects involving existing non-cancer drugs are now being investigated for their effects on cancer – these are so important because if found to be effective they are likely to be approved for cancer treatment quickly, be cheaper and more widely accessible as they are already approved for human use and side effects are known.  These links explain more..

https://integrativeoncology-essentials.com/2020/01/use-of-off-label-drugs-and-supplements-in-cancer-in-2020/

http://www.redo-project.org/

Imagine living with cancer, walking in to a clinic, having your DNA and genome sequenced by a friendly lab technician and walking out knowing a specialist will create a cancer killing virus tailored just for you and your cancer.  This is another exciting development that doesn’t seem too far away now…it’s not science fiction!   Check out Andrew Hessel, founder of Humane Genomics, he explains how tailor-made viruses may one day cure cancer.

https://www.youtube.com/watch?v=2jjQ4QDhuBU

I wonder how I will be repurposed…will I be fertiliser for a beautiful oak? Will I return as a stretchy, wiley happy cat?  A roll of loo paper (someone’s revenge though at least it’s useful)? Or a spider, imagine eight eyes to people watch with….

 
Contract

I’m due an upgrade on my phone.  Chatting with my wonderful friend and hairdresser K, we laughed about our mobile phone providers and how I could easily be expected to sign up to a new contract that would out last me!  Humour and especially dark humour is an emotional landscape I find really helpful.

Blue Sky

It is a high blue sky, crisp cold and sunny day in London today. This emotional landscape is beautiful and I found myself smiling, A LOT.

Me Chemo Ward Dec19

Acknowledgements

Images: 

Woman in the woods – Andrew Neel on Unsplash

DJ – Jernej Graj on Unsplash

Dog Wormer picture (care of The Sun)

Others – Me & Hubby

 

 

© 2020 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: , , , , , , , , , , , ,

Sea of Galilee 2 Israel - I’ve been dying to go so as I’m dying, I’m going.
December 19th, 2019 by Janine
I’mmmmm back! 

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.

Makhtesh Ramon 3 300x300 - I’ve been dying to go so as I’m dying, I’m going.

Tests, tests and more tests

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.

Lebanon Shouf Biosphere Reserve Cedars Trail HM Queen Elizabeth II 234x300 - I’ve been dying to go so as I’m dying, I’m going.

Treatment two in the sequence for prolonging life after diagnosis with Myeloma

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.

Masada sunrise 300x225 - I’ve been dying to go so as I’m dying, I’m going.

Patient choice and positivity

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.

Mason helping and the dress i carried for five weeks without wearing it once 225x300 - I’ve been dying to go so as I’m dying, I’m going.

Ready

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).

Makhtesh Ramon Israel 2 300x253 - I’ve been dying to go so as I’m dying, I’m going.

 

Acknowledgements

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: , , , , , , , , , , ,

IMG 2858 - A year ago
February 6th, 2018 by Janine

A year ago, test results confirmed the specialist suspicions; I have terminal cancer, Multiple Myeloma.  There is no cure.  A year ago.  Already.  The last year has flown by.  Three 2017 dates are now seared into my mind; January 30th, February 10th and my 48th Birthday.

A whirlwind of the new; hospital visits, medical terms and interventions, a community of haematologists, nurses, and Macmillan, a new language of cancer, psychology for self, learning, crying, toughing it out.  Some days I said everything was fine, It’s OK that a hash was made of my cannula or I was waiting over three hours, again.  Other days, I said ouch or OMG or Sh*t, that hurt, get me someone else please, you have not found a vein, this drip is not working, you don’t seem to be following protocol.  I found and used my voice.

Every day I have appreciated the NHS, the team, the help, the efficacy and efficiency of Nurse M, A, and L and others M, J and J; their smiles, their hellos, the added lengths they have gone to and extras they have sent my way, a mask when I’ve needed it, a blanket, a ‘let me know if you need anything’, to ensure I felt kindness, cared for, human, me, Janine.

I’ve had a year of being on the other side of the badge.  It’s not been me with the NHS credentials around my neck; they have had them.  I walk the hospital halls that are so familiar but I’m not visiting a client, attending a seminar or meeting colleagues.  Instead, the appointment is for me, the thick brown file of clinical notes are about me and the graphs and charts on the screen show my body, me, mine.

A year ago. Wow.  I still find it hard to fathom.  Things are normal but not normal.  We get up in the morning.  I go to hospital.  Hubby goes to work.  I rest.  I tinker on projects.  We go to the gym.  We pay bills.  Make dinner. Eat it. Watch too much Prime, too much Netflix (Vikings and The Crown, great, aren’t they?!).  Life goes on.  Yet it is all different, and the same.

I keep saying it ‘a year ago’ because it sounds so strange.  It feels like I’ve been managing this for a few months, not a whole year.  Last year on my birthday, I was getting second opinions.  This year, on my birthday, I will be bunking off one week of Chemo to fly to sun, sand and sea.  Thank goodness for that.  Can’t wait.

Stress and Urgency

I’ve packed in quality moments in planned more.  I’ve had a year of panicking that I may not get the opportunity to see that person again or go to that place.  A year of thinking, ‘don’t delay’, get on with, the before I die, I want to, list.

Deep breath.  The year has passed.  My urge to live life urgently is still there yet the urgency has evolved, is more measured, less reactive, calmer, I think. I hope.  I discovered my need to move to Italy (a lifelong dream) is not so intense and possibly not what I want at all.  Instead, to be able to travel there frequently and for longer periods of time may suffice and be less stressful (more affordable, more flexible, without the bureaucracy and difficulties of moving to a new country).  Or am I compromising too much?  Time, I’ve decided to give it a little more time.  The right thing will become clear.  I’m lucky, I’ll be here tomorrow.

Stress in life is normal, even needed.  Now, as my own therapist proposed, the best question is, which stress is worth it?  I do still worry (in line with what we currently know about the likely progression of Myeloma) that the next two years will be my best, my healthiest, my most mobile.  I do hope to plan and pack in lots of lovely adventures with great friends in 2019 and 2020; ski, sail, bike, travel.  Maybe even have a big party or escapade when this 18-month round of Chemo is over. Although, I’m not wishing my months away just yet.

It’s also OK to not go crazy; spend everything I have on adventures or abandon everything I had already planned and put time in to.  It’s ok to think I’ll be around for a long time (15 years would beat the odds) to invest in our home, our future, and believe, I will have time to enjoy the benefits of the investment.

Feelings

I feel a bit weird yet I don’t really know how I feel, one year on.  A bit unnerved, numb, maybe?  Strangely alive at other times.  I haven’t really worked it out yet.  I wonder if I’ll ever know?  What will show up if I let it?  Over the next few weeks?  Over this entire journey?  The new, yet strangely same life of mine, of ours, that now includes and accepts cancer yet is a life, lives, that refuse to be made invisible, small and weak.

A year ago.  What happened to you over the last year?  Did you grow?  Flex?  Build resilience?  Laugh, love, cry and learn?  I hope so (more laughs than cries with luck).

I have.

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Diagnosis, Psychology for Cancer Tagged with: , , , , ,

BlondWig davidcohen 172050 unsplash - Diagnosis and Baby N
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: , , , , , , , , , , , , , , , , , , , , , ,

J - Tests - Radioactive, Angle Grinders and All Heart
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.

Liar Liar

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.

 

Acknowledgements

Illustrations: Sapphire Weerakone

 

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Pre Diagnosis Tagged with: , , , , , , , ,

Natural Killer Cell - Preliminary diagnosis and she who stares.
January 30th, 2017 by Janine

 

Have you ever received one of those letters from a GP saying: “we have received the results of your blood test.  Please call xxx xxx xxxx to book a telephone appointment with the doctor regarding the result. This is NOT URGENT.”? Well, I have had a couple of these and they’ve never turned out to be anything fancy.  For instance, after one call it was suggested that I top up on some iron pills because my iron level was slightly lower than normal but nothing to “worry about”.   Therefore, I wasn’t worried when on the 10th of January 2017 I received a letter like this and duly rang to make an appointment.

I was a bit worried though when five days before the appointment my usual doctor, Dr A, rang me.  In my head, doctors don’t ring patients before their appointments unless absolutely necessary.  After all, they’re already swamped with the people coming into the clinic every day and under pressure to turn everyone around in ten minutes flat.  Dr A said, actually I can’t remember exactly what she said (not uncommon when the senses are aroused to something unusual) but the gist of it was “I’ve referred you to a Haematologist; there is something in your blood tests that indicates you may have lupus or cancer or…” I didn’t really take in the other few things she mentioned.  Dr A went on to say “we need you come in for another blood test and if you haven’t heard from Haematology within a week, let me know”.  Wow, within a week, Dr A means business: these were the thoughts spinning around my head.

I got off the phone and then kind of laughed it off – oh well – I had asked for my symptoms to be reconsidered as a whole, so I could hardly be surprised that they may have found something.  Yet I was surprised.  For over twenty years I had never felt I had straight or complete answers about any of my common nondescript ailments that for the most part I had got used to and adapted to. Now it seemed a new context was about to arrive.  Then practicality kicked in and I thought, no point worrying until I know there is something to really worry about. After all, the GP hadn’t confirmed anything.  I’d wait to see what the Haematologist said.

I almost didn’t mention it to my husband. Over the years he had heard me bang on about my immune system only to have nothing confirmed; I didn’t really see the point in bothering him. Then I noticed I had started to worry a little and remembered that Dr A was insistent I have an appointment with the Haematologist urgently.  So, in a full about turn I told Hubby what was going on and asked him to come to the appointment with me.  One of the more sensible decisions I have made and one I’ll forever be grateful for.  Thank you, Universe.

 

We walked up to Kings College Hospital (KCH) on the 30th of January; it’s a nice easy 25-minute walk and I was enjoying Hubby being off work on a week day.  We felt relaxed.  We found the Haematology Outpatients Clinic or HOP as I have come to know it.

The waiting room freaked me out.  It was busy.  Most people in there were at least twenty years older than me and many seemed to have mobility difficulties.  I felt out of place.  I walked around the corner to another seating area and a lady looked up me.  She seemed to be staring.  She was closer to my age.  The only one.  I smiled.  She smiled back, sort of.  I turned back to Hubby to ground and distract myself.  I don’t know what he was thinking but he said something that made me laugh and I felt better again. Optimistic. Calm.

The Haematology Consultant, Dr K, was a bundle of energy and ushered us into a clinic room.  She didn’t seem to have my latest blood test results so I handed her a copy.  Hubby was annoyed at this and immediately challenged her as to why she didn’t have the results to hand.  I thought, yeah, I love that; using his voice, making his expectations clear.  Dr K explained, apologised and we moved on.  I also gave her copies of the natural killer cell (NK) tests that I had from years earlier.  I was used to these being dismissed so was appreciative and slightly surprised when she looked at them with interest and nodded.  She kept nodding and making notes down the right hand side of a page as I answered her questions about symptoms, how much pain I was in (from this point forward every consultant I have spoken with has asked me about it, expecting me to have been experiencing pain).  I shared my usual long list of symptoms (more nodding) and said I wasn’t in pain (raised eyebrow) and insisted I found it hard to answer some questions because I don’t know what ‘normal’ is.

Dr K paused and then in very matter of fact way (perfectly done) stated that my last two blood test results indicated that I had Myeloma Blood and Bone Cancer and that they would need to run some more tests to confirm it.  I felt strangely calm but tears welled up.  Dr K seemed to misinterpret these a little but was kind and asked if I needed water or a break.  I explained my tears were about relief.  Relief that what I knew to be true – that something WAS wrong – had finally been believed, and validated. I no longer felt like a hypochondriacal fraud.  The tears were relief.  I could trust myself, my body, my knowing.  I did know my body best.

Suddenly, I was acutely aware of Hubby who was sitting slightly behind me. I turned and looked at him. He was crying.  He had got it straight away.  He knew I was about to have a bone marrow biopsy and that was just for starters.  He knew that they hurt.  He hates me being hurt.  Dr K started explaining the biopsy and other tests I would need and Hubby said he knew what it was; he was a bone marrow donor with Anthony Nolan Trust.  He had been called several times for matching over the years.  I felt calm, clear but I was churning inside seeing Hubby so upset.

Dr K, in what I would come to know as her splendidly efficient manner, initiated the needed tests and a follow-up appointment there and then and asked for another blood test that day.

The blood test went smoothly.  The phlebotomists at KCH are good and I mean really good.  I have had some serious problems over the years with nurses taking blood from me, not being able to find a vein, being rough or causing pain or a whopping bruise and the phlebotomists that take bloods day in day out are fantastic in my book.  I was in and out of there in minutes after a great chat and barely noticing there had been a needle in my arm and eleven tubes of blood vamoosed!

We wandered towards home slowly and then took a detour via Peckham Refreshment Rooms where I knocked back an Italian almond liqueur.  Just because I could.  It seemed the right thing to do.  It tasted GOOD.

Natural Killer Cell 300x277 - Preliminary diagnosis and she who stares.

Acknowledgements:

Statistics: Myeloma UK. www.myeloma.org.uk

Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler.

Copy Editor: Stephanie Kemp

 

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Pre Diagnosis Tagged with: , , , , ,