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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.
A cracking question
A cracking question and one that had crossed my mind when I first started learning about Myeloma. Most of us have heard of Leukemia, or know someone who has requested donations for a fun run they are doing in the name of a charity, supporting people living with Leukemia or sponsoring Leukemia research. It seems Myeloma and Lymphoma are less visible or talked about. To rectify this, please find a wee overview of their similarities and differences below.
Do keep your questions coming.
They are helpful to me and I am sure they may be helpful to others too. It is fine to ask; What is X?, How are you coping with Y? or Are you afraid of Z? All questions make me think, reflect and ensure I am staying informed and open with myself, and others, about all aspects of this journey. So seriously, even though you have heard it a million times before: No question is a silly question!
Differences and Similarities
Multiple myeloma and myeloid leukemia have much in common. The names are similar, because they are both cancers that start in the bone marrow. Many of the symptoms are similar, and even some of the same drugs are used to treat both diseases. However, they are two distinctly different entities. Multiple myeloma and myeloid leukemia involve different cell types; B plasma cells and myeloid line of cells respectively.
Lymphoma specifically affects the lymph nodes. The type of lymphoma is based on the origins of the cancer cells. Some start in the lymphatic system (Hodgkin’s), while others begin in the white blood cells (non-Hodgkin lymphomas).
|Stats (UK, 2014):
Survival (10+yrs, 2011)
2106 (H) 13605 (n-H)
355 (H) 4801 (n-H)
80% (H) 63% (n-H)
45% (H) 6% (n-H)
|Cell type||Myeloid||Type B Plasma|
|Arises in||Bone Marrow and Blood in form of Myeloblasts and Lymphoblasts||Myelium
|Lymphatic system, or white blood cells|
|Some Symptoms||Bone Fractures|
Risk Factors associated with an increased chance of developing the disease
|· Pre-existing blood disorders eg. MDS or MPN
· Age – most forms of leukaemia are more common in older people. The main exception to this is ALL in which peak incidence is in children
· Age—Most myeloma patients are between 50 and 70 years old
· Race— Almost twice as common in Black populations as it is in White and Asian populations
· Infection with infectious mononucleosis
· Age—Hodgkin’s disease occurs most often in people between ages 15 and 34, and in people over the age of 55
· Epstein-Barr virus may increase a person’s risk of Hodgkin’s disease
· Acquired immune deficiency syndrome (AIDS)
· Unprotected exposure to strong sunlight
· A high-fat, low-fibre diet
· Smoking or the use of tobacco products
· Excessive alcohol consumption
· Organ transplantation
· Infections with human immunodeficiency virus (HIV) or human T-cell leukemia/lymphoma virus (HTLV-1)
· Infections with malaria
· A history of infectious mononucleosis (caused by an infection with the Epstein-Barr virus)
· Helicobacter pylori (H. pylori) bacterium, which has been identified as a cause of stomach ulcers
|Scientists unsure why one person is more likely than another to get this cancer||X||X||X|
|Exact causes unknown||X||X||X|
|Starts in bone marrow||X||X|
|Some Symptoms (e.g. anaemia, bruising and infections)||X||X|
|Drug treatment (some)||X||X|
|Risk factors associated with an increased chance of developing the disease||· Exposure to high levels of radiation and particular chemicals, especially benzene and some chemotherapy drugs
· Particular genetic disorders e.g. Down’s syndrome
· Gender— more common in men than in women
|· Exposure to certain workplace chemicals and large amounts of radiation
· Gender— more common in men than in women
· A family history of myeloma
· Environmental factors such as radiation, chemicals, and infections
· Genetic disease of the immune system
· Gender—more common in men than in women
· Family history of lymphoma, particularly brothers and sisters
Leukemia (also spelled Leukaemia)
Leukemia is cancer of the blood cells, usually affecting the white blood cells, which causes these cells to not work properly.
There are four main types of leukemia; acute myelogenous leukemia (AML), chronic myelogenous leukemia (CML), acute lymphocytic leukemia (ALL), or chronic lymphocytic leukemia (CLL). In addition to these, there are other types and subtypes of leukemia.
Leukemia can occur in either the lymphoid or myeloid white blood cells. Cancer that develops in the lymphoid cells is called lymphocytic leukemia. Cancer that develops in the myeloid cells is called myelogenous leukemia. The disease can be either acute (begins abruptly and is usually short lived) or chronic (persists for a long period of time).
Acute leukemia involves new or immature cells, called blasts, which remain very immature and cannot perform their functions. The blasts increase in number rapidly, and the disease progresses quickly. In chronic leukemia, there are some blasts present, but they are more mature and can perform some of their functions. The cells grow more slowly so the disease progresses gradually.
Multiple myeloma is a type of cancer that affects certain white blood cells called plasma cells. Plasma cells are part of the immune system, which helps protect the body from infection and disease. Like all white blood cells, plasma cells begin their development in the bone marrow, the soft, spongy tissue that fills the centre of most bones.
When cancer involves plasma cells, the body keeps producing more and more of these cells. The unneeded plasma cells—all abnormal and exactly alike—are called myeloma cells. Myeloma cells tend to collect in the bone marrow and in the hard, outer part of the bones. Patients with multiple myeloma suffer bone fractures in parts of the bone where the cancer is lodged. Ninety percent of patients have cancer lodged in different bony locations, which is why it is referred to as “multiple.”
In most cases, people who develop multiple myeloma have no clear risk factors. Scientists believe the disease may be the result of several factors (known and/or unknown) acting together. (Wish I knew what they were so I avoid the same combination of factors again!!!)
The name “myeloma” is somewhat deceiving because this cancer does not involve myeloid cells. It gets its name because it arises in the myelium, or bone marrow.
Lymphoma is a type of cancer that originates in the lymphatic system. There are two main types of lymphoma. Hodgkin’s lymphoma (or Hodgkin’s disease) and non-Hodgkin’s lymphomas.
Hodgkin’s lymphoma or Hodgkin’s disease causes the cells in the lymphatic system to abnormally reproduce, eventually making the body less able to fight infection. All other types of lymphoma are called non-Hodgkin’s lymphomas.
Cancers that spread to lymph nodes from other parts of the body are not lymphomas.
The lymphatic system, the tissues and organs that produce, store, and carry white blood cells that fight infections and other diseases, includes the bone marrow, spleen, thymus, lymph nodes, and lymphatic vessels. It is important for filtering germs and cancer cells from various parts of the body. Lymphoid tissue is found in many places throughout the body, including lymph nodes, the thymus (found behind the chest bone and in front of the heart), the spleen (on the left side of the abdomen next to the stomach), the tonsils and adenoids, in the bone marrow, and scattered within other systems such as the digestive and respiratory systems.
Cancer Research UK
Sylvester Comprehensive Cancer Centre (University of Miami Health System) http://sylvester.org/cancer/leukemia-lymphoma-and-myeloma/education/definition
Multiple Myeloma Research Foundation MMRF
Illustration: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Informing your parents on your 48th birthday that you have blood and bone cancer is not a common or pleasant thing to do. In fact, it has been the hardest thing to do in this whole journey so far: let family and friends know, see and hear their pain, their sadness, their shock. Sharing my diagnosis and curtailed life expectancy with people whom I love was and is cutting to the bone.
Trying to work out when to tell and who to tell is a challenge too. I had to seek advice from the wonderful J who had recently experienced this dilemma. In the end, Hubby and I agreed we would find out more information first and did as much of that as possible over the 11th to 13th February. Then we planned to tell my parents first, followed by his parents and then my NZ besties who have known me since I was 18 years old: who I knew I could count on to cope (in their different ways), to be hopeful, practical, support me, Hubby and each other.
I realised I needed to tell people quickly as it is quite hard these days with social media and, when you have the fortune to have good friends, who wish to catch up regularly, to get on with your life if you haven’t told them. I anticipated being less available due to Chemo and recovery, fending off ‘how work was going’ related questions and having to explain why my hair was falling out etc. I just thought no shocks should ensue when I rock up to graduation in July, thinner or fatter (from steroids) and sporting new headwear. Anyway, it’s my style to be upfront about what is going on. Well at least I like to think so.
Also, I recognised I needed support: some now (especially humour) and certainly I am likely to need some later during treatment. Hubby needs support too. So, telling people seemed the right thing to do for me (though I do understand why others might prefer to keep it quiet and wait until treatment has taken place).
My parents who live in New Zealand are amazing people, so generous, kind and often overly considerate of others. They are also inspiring, energetic, wise and well educated; great mentors to others. They were firm with me in many ways when I was growing up, yet open and welcomed questions and debate. My parents ensured I had a diverse range of experiences and chances to pursue hobbies; fantastic holidays in NZ, netball, tennis, scuba, plays, ballet, musicals, art and concerts. I remember going to see Rod Stewart when I was 10 and Charley Pride and the Bolshoi. They have wide music interests. My point is, that for so many reasons I am immensely grateful for my parents and my upbringing. I am fortunate enough to have a great relationship with Mum and Dad, one that only keeps getting better. We have always been super independent and have never lived in each other’s pockets, talking once a month or so and trying to meet in recent years at least once a year. It was especially hard to tell them bad news. Especially this bad news.
Mum cried and had to move away from the Skype call. Her natural empathy for others is huge and so close to the surface, I wasn’t surprised at this reaction but it was hard to view. Dad in his usual stoic, practical in a crisis kind of way, hung in there and asked all the right questions. I did my best to be matter of fact, hopeful and clear. I was churning inside seeing the hurt on their faces. We eventually ended the call so Dad could go and look after Mum. Over the next few weeks it took a bit of convincing them not to jump on a plane immediately (imagine me sending shackles for Mum over the ether!) but in the end, they have been amazing as usual, listened to our needs and I am now very much looking forward to their extended visit later in the year. I am very proud of them and how they are coping.
Telling Hubby’s parents was not really any easier except we spoke over the phone so I didn’t see their faces. It all went a bit wrong initially as they were in the car at the time. When we suggested we wait until they were home they insisted on going ahead but then they didn’t know what was coming. When we explained, the call was stopped and started ten minutes later once they were home. I love my parents-in-law (P and T) and Hubby’s Mum. They have all been very supportive. Being visited by P and T the very next weekend was helpful and in the moment I loved T’s assumption that I would beat the odds.
The weird thing and something I really resented was how many people knew I had Myeloma before I was able and ready to tell my loved ones. My dentist and his receptionist knew because I needed his clearance of not needing any dental work before I could start a bone building drug, the beautician at the hotel we stayed in while taking time away to process all the new information and treatment options knew, when I filled out their questionnaire and she gently announced she would not be able to give me the massage I was craving. Scared of a law suit if something went wrong I suspect. She did give me a lovely pedicure and I found myself reassuring and cheering up her and her manager. Looking after others needs about my cancer was something I learned would become a regular occurrence. One I plan to avoid unless necessary and may come to be rude about as I only have so much bandwidth for looking after others’ needs right now. Sounds selfish but true; though working with a couple of private clients still appeals as it wouldn’t be about my stuff.
I laughed as J had warned me in a funny story about her partner who had told ‘everyone’ about her cancer diagnosis when Hubby came home late one night and confessed. He had shared our new challenge with his manager so he could take some time off to attend tests with me. Then ‘he’d spilled the beans’ over a beer and late night commuter trip following hours of standing on a platform and delayed trains; he’d been frustrated he wasn’t home when we had so much going on. I didn’t resent this; he needed to share but it was weird that people I’d never met and had no affiliation with, knew about my stuff before my good friends knew.
Telling my besties was also a logistical timing issue. On one hand, it was fab as S happened to be visiting from the States with her hubby and his daughter. However, it was our birthday week and I really didn’t want to tell her my news before we had been able to celebrate her birthday. This was tough as it felt like I was lying to her and not able to fully connect or spend as much time with her as I had planned to as I raced off to appointments. It was a total relief to let her know and then Skype with my other besties the next morning. As anticipated they were simply wonderful, reeling but managed well and said all the right things. Soon after I sent an email which was a much easier way of communicating my news to my close UK based friends and other special people in my life all around the world. Deep sigh of relief and a wee bit of fear followed. You never know how these things will land.
While telling others has been extremely hard: telling myself about how many years I am likely to live has been strangely easy. I did want a long life but only if it was filled with quality, mobility, activity and intact cognition. This way, with Myeloma, I strangely feel more in control and have a rapidly growing awareness of just how I might want to live life in periods of remission. Instead of living far off in the future my next five years is firmly in focus. Who I wish to spend it with, how I want to spend it, is a close second in my mind behind successfully managing treatment. I envisage kicking this cancer into outer space for as long as possible if not forever. The way I see it, there is no reason why I can’t be one of the first people to experience Myeloma as a chronic illness with long periods of remission over normal life expectancy, rather than have life limited to 8-10 years with frequent periods of hospital visits and new Chemo regimes. That’s what I’m gunning for and requesting of the Universe. So, you see I still want to be special, but I am being much more specific about, how I wish to be special, when speaking to the Universe.
Illustrations: Sapphire Weerakone
Copy Editor: Stephanie Kemp
© 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? Simon 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 Si 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 Si!!!), 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 Si. 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 Si 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. Si 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.
Si 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 Simon 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 Simon 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