Unexpected consequences

In the last 5 weeks I have seen my plastic surgeon, my oncologist, my breast surgeon, my breast radiologist and my dermatologist. My Christmas present from them all: a clean bill of health.

Unfortunately cancer treatment does not just end ubruptly. More than two years post chemo I am still being treated and monitored and I have a cast of doctors and other medical professionals I report to.

I think it is important cancer patients know that it is a marathon, not a sprint. If you want to regain what you have lost you will need to work hard. It is also important to know there are plenty of unexpected consequences.

Those consequences span permanent physical damage, emotional and physical pain and drug side effects.

It isn't for sissies, that's for sure.

Grief

I heard Anika Moa being interviewed by Susie Ferguson a few weeks ago. Something she said really resonated with me. She spoke of the grief associated with coming through a life changing illness. You grieve the loss of your health and your old life.

I have certainly felt all the stages of grief:

Shock and denial.

Pain and guilt.

Anger and bargaining.

Depression, reflection and loneliness.

The upward turn.

Reconstruction and working through.

Acceptance and hope.

I've struggled with work this year. Not the work itself but the feeling of loss associated with it. I didn't get to do lots of things I'd worked really hard on. It felt like my career stagnated. I lost contact with clients. I felt replaceable.

I absented myself while I went through the depression, reflection and lonliness phase but in the last quarter of this year I pushed into the upward turn and I am finishing the year with acceptance and hope.

Guilt

I feel guilt about the worry I've caused everyone who cares about me.

I feel guilt because people have had to carry my load.

I had to learn how to let go. I then had to learn how to wrestle back what was once mine.

Anxiety

I have a lump on my right arm. It concerned me so I took it to my dermatologist so he could look at it. The lump is a fibroma. I am prone to them. They are nothing to worry about. It is easy for him to say. I am not a fan of lumps. They fill me with fear.

I have a psychic lung. That is not a technical term - I made that up - but I, thanks to radiotherapy, now have a lung that occasionally feels weird and it tends to be a precursor to an upper respiratory illness. Over the past week I have had a weird lung, I've felt a bit hot, had a headache and a slight cough.

Before cancer if my lung felt weird I probably would not have noticed, or if I did, I'd have thought "My lung feels weird. That's odd".

Now my mind conjures up the worst possible scenario. I google lung cancer. I read everything I can on it. I have trouble sleeping. I obssess over it.

Then one morning I woke up, my lung no longer felt weird, my headache had gone away and I was completely back to normal. I think I must have had a bit of a virus.

Anxiety will be my companion for the rest of my life. One out of of every three breast cancer survivors has the cancer come back. I have to be in tune with my body and if I have a strange pain or a persistent cough that lasts longer than a couple of weeks, I need to get it checked out.

If the cancer metastasizes into my lungs, my brain, my liver, my bones: it will be terminal.

Trauma

I go for my annual mammogram and ultrasound just before Christmas. As much as I love seeing Steve and Jeremy, the Mercy Breast Clinic is not a place I enjoy visiting. It is filled with terrifying memories.

I am very conscious of the other women sitting in the waiting room and hoping that they aren't going through what I went through - the biopsies, MRIs, imaging, pathology results and diagnosis. I hope that it is just routine screening for them. I try and smile at everyone while I feel sick to my stomach.

Disappointment

There have been lots of little disappointments along the way.

People don't always act with kindness and compassion: as I would expect them to. That's OK. It is not my problem. I can only control how I react.

I have had to miss opportunities and tell myself that my health is more important than a trial or a conference. There will be other trials and conferences if I can keep myself alive.

Lymphoedema

My left arm has been problematic since chemotherapy finished and radiotherapy started. Since the end of 2021 I had been in a full arm compression sleeve to prevent my left hand and arm from swelling up.

Lymphedema in your arm is a risk if you have had your arm pit lymph nodes removed and you have any of the following: taxane based chemotherapy, radiotherapy and weight gain. I had all three.

The good news is that my arm has been relatively stable since reconstruction surgery and I lost some weight. Next month we are going to trial coming out of the compression sleeve. Fingers crossed we can tick that off as a thing of the past too.

Permanent physical damage

Apart from the mastectomy and reconstruction scars, I also have damage to my gums, eyes and the inside of my nose from chemotherapy. Those parts of your body have fast reproducing cells and chemo attacks fast reproducing cells.

My eyes and nose often just run. I have sun damage to one of my eyes that needs to be removed (sigh and owwwwwwwww) and some of my tear ducts are damaged.

I did have nerve damage in the soles of my feet and the end of my fingers, but that seems to have improved. I can feel the bottom of my feet again.

My dentist was freaking out about my gum health during the visit before last and put the fear of god in me. I have always been a terrible flosser, so to help my gums, I got a water flosser. I now water blast my gums every night. It really works. My dentist was delighted with the improvement. I have always enjoyed a spot of water blasting and I can recommend the gum variety as being almost as much fun as the blasting the deck variety.

Finally the range of motion in my left arm has been affected. I have worked hard to rehab that arm and I am luckier than most as I can easily lift my left arm over my head. A lot of women cannot after the surgery I've had.

Ongoing reconstructive surgery

I did not fully appreciate the extent of the perfecting surgeries required to make a plastic surgeon happy with the results.

I am probably going to need 3 more surgeries to make my boob match its sister. In order to be covered by my medical insurance those surgeries have to be done within 2 years of my reconstruction surgery - so by May 2025. My first one is scheduled for 30 January 2024.

Drug therapy

I am on hormone therapies because my breast cancer was strongly hormone driven.

I have a goserelin injection into my hip fat every month. It is a type of hormone (endocrine) therapy used to treat breast cancer in premenopausal women. Goserelin switches off ovary production by interfering with hormone signals from the brain that control how the ovaries work. This is known as ovarian suppression. I will be having those monthly shots for 5 years.

I am also on a drug called tamoxifen. Tamoxifen blocks the effects of estrogen on hormone receptor-positive breast cancer cells by sitting in the estrogen receptors on the cells. If tamoxifen is in the receptor, estrogen can't attach to the cancer cell and the cell doesn't receive estrogen's signals to grow and multiply.

I am going to be on tamoxifen for at least 5 years. At the 5 year mark my oncologist will decide if I stay on tamoxifen for a further 5 years or go onto another drug for 5 years. All up, drugs for 10 years.

Side effects

The hormone therapies throw you into a chemically induced menopause with the myriad of issues that causes. For me it has been night sweats, itchy skin and sleeplessness.

Exercise, a healthy body weight, no caffeine after lunch, no alcohol, limited processed food and prioritizing sleep has really helped me and my sleep has improved and the night sweats have almost disappeared.

Risks

I am at increased risk of blood clots and uterine cancer from the drugs I am on. I was told by the breast surgeon last week that I should be in flight socks any time I fly. Oops - I fly reasonably frequently and have not been in flight socks. There would be a certain amount of irony involved if I got through years of cancer treatment only to be taken out by a blood clot because I hadn't worn flight socks. I think that is quite funny. Appreciating the humour in being taken out by a lack of flight socks is also an unexpected consequence. It is a good one and there have been as many good, as there have been bad. I choose to focus on the good ones.