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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
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.
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).
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
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!
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.
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.
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….’
Copy Editor: Stephanie Kemp
© 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
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.
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.
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.