Waiting

(Caring for Cancer, Part 2)

Read Part 1 “How our Cancer Story Began” HERE

I never realized just how excruciating waiting could be.

We had already waited an agonising two weeks on the query-cancer pathway for the Consultant Oncologist appointment, and we had left with nothing more than the promise of more waiting. We had naively believed that we would walk out of that appointment with at least a possible diagnosis – it was a query-cancer after all, surely that was urgent? Admittedly the oncologist had stated that my husband did not have cancer, and it was only my absolute confidence in my research, plus a little tenacity, that had secured a follow-up appointment. But, still we had to wait.

We waited for the phone call. We waited with no answers, no plan, no control and no idea when we might hear. By now my husband was in chronic pain and, understandably, clung to the possibility that his symptoms were caused by an infection – after all, that was what the Oncologist had said.

My reality was different.

I had read the research papers. I had assimilated the data presented to me. I was convinced he had cancer, probably metastasized. I knew that with every day that passed his chances of a good prognosis reduced. But all we could do was wait.

My sleepless nights continued – full of anxiety, despair, silent tears and newborn comfort. In a strange way these quiet, long nights offered some relief – a private space to release emotions pent-up during the day.

In the day time anxiety, dread and fear plagued me constantly, but some semblance of normality had to continue. I had a three month old to nurse, feed and change, and a perceptive and inquisitive toddler that, quite rightly, demanded my attention. I had to run the house; do the food shopping, plan dinner, put the washing on, tidy up. I had to interact with other people – talk with neighbours, friends, the postman. I had to go through the motions of normal life. I had to keep it all in.

Staying in control of my emotions was hardest with my son. I struggled to be the happy, playful and present Mummy he knew. I struggled because the real me was fracturing and crumbling inside – unraveling in panic that we would be left alone because a diagnosis would come too late. If he caught me off guard, in his innocence and with empathy he would ask “are you sad Mummy?” My mind would gush with the adult out-pouring that I craved, and my heart longed to squeeze him tight in a possessive embrace and to simply sob. Instead, I would pull him close and allow a few tears to roll down my cheeks as he nestled, unaware and protected, into the crook of my neck.

Adding another layer to my anxiety was the constant threat that my husband might leave the country.

With his family overseas, and aware of the American-style of medical care, understandably his patience with the long, bewildering NHS process was reaching its limit. He wanted to fly away and check into a hospital that wouldn’t discharge him until they had uncovered exactly what was wrong, and treated him for it. Family and friends scattered across the globe were making suggestions; Germany, Costa Rica the USA… I had to admit, the idea of a quick diagnosis was giddily tempting, save a few key points:

  1. The kids and I couldn’t go with him. Our daughter, at just 3 months old, didn’t have a passport. There was a chance that if he got on a plane, I would never see him again.
  2. Being his advocate would be significantly harder. Even if I could follow him later with the kids, I was unsure of my ability to be his advocate in an unfamiliar medical system, living in a hotel and possibly operating in a foreign language.
  3. The NHS has a world-class specialist cancer treatment hospital. If the diagnosis was cancer, then the UK was the place to be.

I felt trapped. I selfishly wanted him to stay, but what if that meant everything happened too late? What if by staying it ultimately led to the worst prognosis? How could I stop him from going?

In truth, I couldn’t. Every day or so he would send me flight details and ask my opinion.

If I didn’t want my husband to leave the country, I had to take matters into my own hands. I had to make the NHS work for us – I could no longer wait for the cogs of the NHS to slowly turn on their own.

In and around being Mummy, housewife and nurse to my poorly husband, I contacted the Patient Advice and Liaison Services (PALS). I updated them almost daily with the lack of progress in my husband’s diagnosis. I spent hours on the phone, ringing the abundance of wrong numbers on hospital websites and waiting on hold to finally reach the relevant secretary or other admin person. I chased everything up and followed every possible avenue to check that everything was in place, all the paperwork had been done and the right people explicitly knew our situation.

Just in case all my efforts were in vain, I also organized my daughter’s passport. I gathered all the relevant documents and signatures and managed to get a photograph of my 3 month old looking straight at the camera with eyes open (no mean feat!). I also just about managed to hold it together in the Post Office when I was told they couldn’t accept my application because of a typo – the fear of my husband flying away without us was renewed and amplified. Somehow I managed not to burst into floods of tears as, at the same time, my toddler was having a meltdown near the stick-it notes and my daughter, strapped to my chest, was desperately head butting me for milk, which had by now, glamorously, saturated my breast pads and was trickling down my front.

 

At last, we received the phone call and were given confirmation of the ENT oncology appointment – just a few more agonizing days to wait. Thankfully this was enough progress to quell my husband’s itchy feet.

Midmorning the day before the ENT appointment, the Consultant Oncologist called my husband at home, which in itself seemed odd. Apparently, while showering, the ‘diagnosis’ had occurred to him – a rare and treatable bacterial infection known as ‘Cat Scratch’. He’d already booked blood tests to confirm his suspicion.

My husband was beaming – in an instant our future had gone from looking bleak to no longer being under threat. He wanted to celebrate, and I wanted to join him.

But I couldn’t celebrate.

My hugs and smiles were strained – something wasn’t right. I didn’t believe it was Cat Scratch – I knew it wasn’t Cat Scratch.

Cat scratch had come up as a possibility in my literature search when I first suspected something sinister. I had eliminated it as an option because the symptoms and timeline didn’t quite fit. I had concluded Lymphoma and/or an abdominal tumour. From my research I had concluded cancer and, as always, I trusted my research.

This was not what my husband wanted to hear from me. He was ready to cancel the ENT oncology appointment – after all who was I to diagnose cancer when the oncologist said infection?

Thankfully, he agreed to go to the appointment.

In the waiting room my Mum rocked the pram. I buzzed with nervous anticipation and my husband fidgeted. This had to be the appointment when things moved ahead. Finally we were called in. After a series of examinations and questions, the oncologist paused, looked at his hands then announced that he thought my husband was seriously ill, and that he probably had been for some time. His best guess was Lymphoma.

Wow. The sense of relief was almost overwhelming – at last someone was on the same page as me, now they surely must take quicker action. But relief was quickly replaced by reality and a renewed terror – this was really happening.

He was booked in for a biopsy and finally was given a referral for a CT scan – something I had asked the GP for at the original appointment. But, again we faced weeks of waiting – waiting knowing that the most likely scenario was cancer, but not knowing the severity or prognosis.

Anxiety hit a new level and the waiting became unbearable. I reverted back to what I know best – proactivity, research and data. I organized paperwork and booked CT scans at private clinics (some 6hours drive away) in the hope of expediting diagnostic tests. But perhaps most significantly, I presented the facts of our experience to PALS and pointed out that the Government’s Cancer Pledge is  “A maximum 2 month (62 day) wait from urgent referral for suspected cancer to first treatment for all cancers” – we were on day 65 and looking at a further 14-21days before diagnosis.

The day after I sent that email my husband had a CT scan. Two days later he got a phone call asking him to go to the hospital immediately for a biopsy of his swollen lymph node.

A few days after surgery, my husband attended the blood clinic appointment booked to test the Cat Scratch hypothesis. This was the only appointment I didn’t attend – I had the kids and it was supposed to be a routine blood test. However, unannounced the Consultant Oncologist turned up to the clinic and presented my husband with a diagnosis:

Cancer. Metastasized Germ Cell Carcinoma, including a 7cm mass in his abdomen.

 

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How our Cancer story began

It all began one evening just after I had tucked my son into bed and was heading to bed with our 4-week old daughter, ready to nurse her for the umpteenth time to try to shift my mastitis. My husband strode out of the bathroom and presented me with his upper thigh; “does this look normal?”. “No” was my swift and direct response to his question about the golf-ball sized protrusion, followed by “you should definitely get that looked at”.

The GP referred him urgently to the hospital, suspecting an inguinal hernia, which apparently can be quite serious. Once he had an ultrasound it became clear it was a swollen lymph node. Quite swiftly it was decided that the best course of action was to surgically remove it – there and then and under local anesthetic, which they did – and not very delicately.

In the days and weeks afterwards, including over Christmas, he suffered horribly from Lymphedema and nerve damage. Finally, in the New Year, the histology results came back – “Negative for Cancer; Reactive Lymph node”.

Phew – we were relieved, or at least we should have been.

I didn’t feel relieved. I felt restless. The phrase “Reactive Lymph node” kept running through my mind. Why was it reactive? What was it reacting to?

I have a PhD in immunology, and this wasn’t making sense. Why were the doctors not asking questions? Rob had had no signs of infection. No illness, no injury, cut or abrasion – nothing to explain a “Reactive Lymph node”. When we raised these questions, we were told that “in the UK we practice evidence-based medicine” – i.e. doctors don’t go hunting for disease, they wait until it presents itself. In general I think that evidence-based medicine is all well and good, unless the presentation of disease is sat in a jar of formaldehyde in the hospital basement.

A month or so later a lymph node in Rob’s neck, near his collarbone, swelled up. It was a weekend and I was fed up with the lack of action surrounding Rob’s health. This was “evidence” and I was not going to let this one go.

I spent the weekend researching. As I mentioned, I have a biology-based PhD – I am used to using search engines to find relevant scientific and medical research. I am also able to read, interpret and assimilate the information – a skill set I never dreamed I’d use for my husband’s health.

By Sunday lunchtime I had “diagnosed” my husband with Lymphoma and/or a large abdominal tumour, probably metastasized.

I didn’t sleep that night. I knew. I was the only person in the whole world who knew how ill my husband really was.

Fear set in.

First thing Monday morning I booked the earliest doctor’s appointment, dropped my son off at a friend’s house and drove Rob and our daughter to the surgery. In the doctor’s office I sat down, put Sofia on my boob and resolved not to leave until we were given a viable course of action.

Luckily, our GP is a very sensible and intelligent man. I am sure he could detect my fear. He was also perceptive enough to detect the choice phrases and medical terms (that I had memorized the day before) I was using to alert his attention to the seriousness of the situation, without terrifying Rob.

Rob was put on the Cancer-query pathway. In NHS terms this means you get to see a Consultant Oncologist within two weeks. I left the GP’s appointment relieved – thankful that I had been listened to, taken seriously and that we had a way forward. I think Rob was a bit numb.

However, my feeling of relief was short-lived.

Two weeks is a hell of a long time when you know your husband has Cancer, but you have no idea of the severity, the spread or the prognosis. Family life continued, though sleep was pretty elusive.

The day finally arrived.

Just as Sofia filled her nappy we were called through to the oncologist’s office. I handed her to my Mum who would join us on hospital visits as our mobile babysitter so I could continue to nurse my daughter through the delays and unpredictability of the NHS, while being child-free for the important bits.

Ridiculously, upon reflection, we had built this appointment up to be the one where we would be told what was wrong with my husband – essentially I was expecting a diagnosis, or at least a preliminary one. I mean, I had diagnosed him from the literature, surely to an expert in this field it would be obvious?

After taking Rob’s medical history again (notes do not get passed on or if they do, they do not get read), the oncologist examined Rob. By “examined” I mean he felt his glands in his neck in much the same manner your GP does when you have a common cold.

That was it.

He then declared Rob Cancer-free.

Rob was good to go. He had just got the “all clear” from the Consultant Oncologist, who also happened to be the Head of the Department. It was the news he had been waiting for. He was not dying of Cancer!

I, on the other hand, was furious. How could he feel his glands and declare him Cancer-free? My eyes stung with tears of frustration and I did not get up to leave.

I ran through every single symptom – every symptom, that from my literature search indicated Cancer – and not only that, but metastasized Cancer. Despite this, the oncologist told me “none of those symptoms explicitly indicate Cancer”.

My response? “None of them rule it out”

Poor Rob. He so desperately wanted to believe the oncologist – after all he was the expert and he was saying “infection”. I just couldn’t let that happen, I knew he did not have an infection – tempting theory, but it just did not fit. I trusted my research. I was standing my ground.

“My wife has a PhD in immunology”, Rob said by way of explanation for my insistent questioning, which was being met with some bewilderment.

We went round the loop of the infection argument again. At each point I countered with a reason why it was not an infection – no fever, no illness, it first presented months ago, his visits to the tropics didn’t fit the timeline, no scratches, no abrasions, no sores… The list went on. Again, I resolved not to leave until we had a viable way forward.

We were at loggerheads, so I concluded with this:

“You cannot rule out Cancer without conducting a single diagnostic test.”

On that point, there was no room to argue. Though the honest, and somewhat defeatist, response from the oncologist was “I don’t know what tests to request”.

No problem – I have a list! The top of which was a fine needle aspiration/biopsy of his swollen supraclavicular lymph node (the one in his neck). Add in some blood work and a CT scan and we’re good to go!

Of course nothing is quite that quick and simple – his immediate response was that the ENT (Ear, Nose and Throat) oncologist had been on holiday and was backed-up for weeks. But, he booked blood work and an x-ray and set the wheels in motion for more specific diagnostic tests. It was a way forward at least, even if it meant more waiting.

The next few weeks were fraught with uncertainty, confusion, frustration and fear.

Continue reading this story  HERE

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How did your Cancer story start?  What was your biggest challenge in those early days? 

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You may also like: Caring for Cancer: 6 things I learnt and My Thyroid Story – Hashimoto’s Thyroiditis

If you’re Caring for Cancer and would like coaching and guidance on how to be proactive, the best ways to be an advocate, help with food, nutrition and support then get in touch caroline@flourishwellness.co.uk and we can arrange a time to chat.

 

 

 

 

World Cancer Day!

It’s World Cancer Day today! We’ve got our Unity Bands – have you got yours?

Most of us know someone who has been, or is, affected by Cancer.

1 in 2 people born after 1960 will get Cancer (Cancer Research UK).

Cancer is a horrible, indiscriminate disease that can affect anyone at any point depending on a combination of genetics, lifestyle factors and triggers – we desperately need to know more about it.

My experience of my Husband’s Cancer was terrifying, life-altering and both humbling and empowering. You can read more about what I learned from that experience HERE. Having seen Cancer up close and personal, I am determined to do everything in my power to reduce the chances of my family being affected by it again.

40 % of all Cancers are due to lifestyle (Cancer Research UK).  

It’s no guarantee, but as a family we have changed our lifestyle and diet in order to minimise our risk of Cancer, or secondary Cancer.

Being a younger person, or family, with a Cancer diagnosis can be particularly isolating, but Shine Cancer Support provides an amazing network for both Cancer patients and carers. If you’re in your 20’s, 30’s or 40’s and are affected by Cancer, then give them a shout.

Have you experienced Cancer as either a patient or carer?  How would you describe your experience?

 

Caring for Cancer: 6 things I learnt

My husband was diagnosed with Cancer about a year ago. We had just moved into our first house and just had our second child. Our world was turned on it’s head and it was our worst nightmare. Here are 6 things things I learnt while Caring for Cancer:

  1. Health is our most valuable asset: We all know this really, but if we tend to take it for granted. When you are faced with the mortality of a loved one, the only thing that matters is that health is reinstated. I pushed myself beyond what I thought were my limits to so this. I booked hospital appointments, I drove to and from hospitals, I sat in waiting rooms, I packed up the house, I tried to be super Mummy – the list goes on. I was trying to “fix” him, to make everything right. Slowly I realised that my own health was suffering, and with that realisation came another – that if my health goes then the whole house of cards falls. People were depending upon me, I had to prioritise my health.
  2. Complacency kills: If we hadn’t pushed for a diagnosis, my husband would probably be dead by now. We fought and insisted and went back again and again. I am immensely proud of the NHS and am constantly amazed at the kindness and dedication doctors and nurses who make-up the NHS have. But, you are the expert of your own body – do not be complacent about your health.
  3. I want to help people be their best: I’ve invested a lot of my life into caring for the natural world and wanting to protect our planet. I am pleased that I have done this and I will continue to do so. However, we are making the natural world sick and ourselves at the same time. How can we hope to “save the planet” if we can’t make healthy choices for ourselves? I want to be the catalyst for positive change in people – empowering them – and I hope the world will be a little bit happier and a little bit healthier as a result.
  4. We are all capable of change: I have always been able to adapt to new situations reasonably well. I’ve lived in several countries and explored different cultures. But, the change I am talking about is a deep, fundamental change. I have always been a planner, a goal setter. I have always known the path ahead and found comfort in that. This year that was all taken away. I couldn’t plan, I didn’t know what was around the corner or what the next day would bring, let alone the next month, three months, year… I changed. I lost my tenacity for planning and living in the future. I relaxed and smelled the roses.
  5. Mindfulness and “accidental” meditation: I learned to be in the moment. To observe it, enjoy it and accept it. I learned to be non-judgemental and compassionate. I learned to let go of anger and embrace happiness despite the bigger picture. In doing so, I realised that I have been meditating accidentally for a long time! Many people over the years have suggested I meditate – that it would be good for my state of mind, help me relax and sleep more easily. This year I actively began to meditate. I realised that I did it through both of my child labours, that I did it on every dive – I would enter a different zone, I would be calm, but focused.
  6. All you need is love: Ok, so the Beatles were right. This year we, as a family, have been stripped back to nothing – nothing else mattered, just us.  When you really don’t know what tomorrow will bring, all that matters is that you are there and that you love and you show love. In reality, none of us know what tomorrow will bring. Show compassion. Declare your love. Be kind. To yourself and others.

Have you “cared for Cancer”?  What did you learn? 

Click HERE to book a FREE Discovery Session about how I can help you through the struggles of being a carer

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Did cancer steal my year? 

Did Cancer steal my year?

Three words that best encapsulate my 2015 are:

family, strength and love

2015 was supposed to be our year of rest, of recovery, of focusing just on the family. We had just bought our first home and had our second child.

However, 2015 got off to a rocky start. My husband was hobbling around Costa Rica with lymphedema after a botched surgery to remove a lymph node. I was in the UK with mastitis, again, and looking after my newborn daughter and 2-year-old son – who had a bad case of chickenIMG_3359pox.

I saw in the New Year in my pajamas without a drop of bubbly and no kisses under mistletoe. I was snuggled in bed, sleepily nursing my daughter, in the hope of some pain relief and of keeping her drowsy enough not to wake her bespeckled brother.

Things progressed from not so good to pretty horrific in quite a short space of time.

Having being told that the lump they had removed from my husband was not cancerous, a new lump appeared. After an afternoon reading medical literature I booked an urgent doctor’s appointment. I dropped my son off at a friend’s house, took a seat in the doctor’s office with my husband, popped my daughter on my boob so I could hold a conversation, and decided not to leave until I was taken seriously – I knew my husband had cancer.

Fortunately, our doctor (GP) is brilliant, and he took my concerns seriously and placed my husband on the cancer-query pathway.

Unfortunately, this is not a quick-pass to the required diagnostics, but apparently a ticket for a two-week wait and a meeting with a rather uninspiring oncologist. Said consultant oncologist gave my husband’s glands a quick feel and declared him cancer free.

What followed was a terrifying and isolating few months. I was the only one in the world who “knew” my husband had cancer and I couldn’t get anyone to listen let alone order a CT scan.

I lay awake night after night, suffocating in the knowledge that I might loose my husband; I might become a single Mum – a widow at 32. No one would listen to me. No doctor would run the tests and my husband understandably tended to exist in happy denial rather than the terrifying reality.

My husband was diagnosed with metastasized (intermediate) Germ Cell Carcinoma 3 months after his first related doctor’s appointment.

We moved in with my parents to be closer to the hospital and to have support and help with the kids.

Cancer stole so much from me in 2015

It stole my time; time that belonged to my children, “mummy time”.  They were passed on to friends and family and into nursery while I tried to juggle the demands of a carer with those of a newborn and a toddler. I never felt like I gave enough to anyone.

It stole the control I had of my life; I couldn’t plan, prepare or make long-term decisions. My choices, be it how to spend the day, where we lived, when and where my son should go to nursery, all became limited and I felt trapped and my hand forced.

It stole our first year in our new home; our year of stability, our year without a landlord, our year to get to know our neighbours; to make friends, to develop a network, to get to know the area.

It stole my calm and gave me anger – a deep, bubbling, fury at the injustice of cancer and a frustration at my inability to “fix” my husband and make everything ok for my family.

 Did cancer steal my year?

This year has not gone according to plan, but there is no point wishing it hadn’t happened.

IMG_3898My husband did get cancer in 2015, but it has shown me that hope and happiness can prevail. Even in the darkest moments, when I was at a complete loss, there was always a way to be proactive – to make something of the situation. Even when I felt I had nothing more to give – when I felt empty and drained from being pulled in so many directions, for never quite meeting my own expectations and from expending every ounce of energy getting through the day and being up-beat for everyone else – there was still reason to smile, even if I needed reminding of it. This was often through the kindness of others, which was immense.

The children grew, the sun came up and time marched on. None of these things can be resisted, and this year has taught me more than ever that things that can’t be changed need to be embraced. Like all things, I believed that “This too shall pass”, but how it passed day-to-day was, to a large extent, in my hands. I chose to give it my all and to seek a path forward when it seemed all doors were closed.

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I have achieved things this year I never thought to be within my grasp. I have loved more than I ever dreamt I could. I have been stronger than I knew possible. I have become less anxious, less judgmental and more content. I have let go of anger. I have adapted more than I can believe and I have gained a passion and focus that I never expected. I have hit real lows, but I appear to have bounced back higher.

Just before Christmas we were lucky enough to hear that, as far as they can tell, my husband no longer has cancer. We are a long way from being back to “normal”, but whatever “normal” is, it will certainly look a lot different this year. But that’s more than ok.

What three words describe your year?  Are you caring for cancer?
I offer discounted coaching sessions for people caring for cancer – I know how tough it can be. Contact me for a FREE (no obligation) Discovery Session to talk about how I might be able to help.