The Scare

#TriggerWarning: This blog contains details about medical procedures & emotions before, & after cancer scan results.

Alt Text: A pen & ink painting of shapes that resemble waves at sea.  The waves are outlined in black & filled in pink.  There are random spaces that have been left white to represent glimmers of hope.

In early July, I had my first proper scare.  I found a new lump in my breast. 

Actually, my partner found the lump because he helps me to check each month.  I’ve lost all confidence in my ability to judge what’s different in my body after my Breast Cancer was picked up in a routine mammogram.

We both checked a few times over the course of two weeks.  The lump stayed.  It was definitely a lump.  It was near to the operation site.  I knew I had to act fast.  No matter the fear (cancer is all about not wanting the test results but wanting the test results at the same time), I knew that I had to get the lump checked out ASAP.

Although my GP Practice is very supportive, I didn’t bother to go through them first. I was going to the hospital chemo unit for my bone infusion in mid-July.  I decided that to save time, I’d pop along to the Breast Cancer Unit after I’d had my blood and COVID tests.  At bloods, I happened to bump into my Breast Cancer nurse & I told her about the lump.  She urged me to ring the nurses’ line so they could book me an appointment.  And of course, as always, she reassured me, explaining that lumps can appear for all sorts of reasons.  But she also stressed that I mustn’t delay in getting it checked. 

Despite her advice to ring, I went around to the Breast Unit anyway & to be honest, I was in a bit of a blur.  I thought that a nurse might be able to check it there & then & I’d have an answer.  The receptionist was very kind but said no, I actually needed to be seen by a surgeon.  Of course I did.  I felt a bit silly thinking that a nurse could give me a diagnosis there & then & after a ‘feel.’  The receptionist took my number so that a nurse could call me back.  I went round to the Maggie’s Centre for a cup of tea & a chat.  One of the kind staff there said that I shouldn’t delay getting it checked & that I’d done the right thing to speak up.

Two days later, I had my bone infusion as planned.  Later that day, one of the Breast Cancer nurses rang me & was again, very supportive & reassuring, but after listening to what I’d found, she said that I needed to see a surgeon.  She said that my one had left, but I’d still be in good hands.  Within two minutes of our phone call ending, I had an appointment for a week later.  I was amazed at the speed in which I was to be seen.  But I was very, very frightened.

Whilst waiting for the appointment, I saw my GP for my monthly Zoladex injection.  He said I’d done exactly the right thing in ringing the Breast Cancer Services.  He was also reassuring, saying that I’d had several tests over the past year & he felt confident that I’d be ok, but that I still needed to be checked (there’s a theme here).

And then the guilt came.  It’s true that I’d had lot of tests & scans over the past year.  All, thankfully, showed NED (No Evidence of Disease).  Most of the side effects that I’m experiencing are due to my body getting used to the medication but confusingly, they also look like the signs of secondary (or metastatic) Breast Cancer.  I still can’t tell the difference between what’s my ‘usual’ chronic pain from my existing impairment, or what are new symptoms.  My GP has always erred on the side of caution; always agreeing to further scans & checks.  This is because a small amount of cancer was found in one lymph node, plus I had waited an additional four months for my lumpectomy because of the pandemic.  The original breast lump had shrunk whilst I was on tamoxifen, but another small one had grown by its side.

I felt guilty because I didn’t want to waste anyone’s time, or NHS resources.  But then I realised that no one minds, they just want to help you & they aren’t judging you.  And my GP also said that it was important for me to have clarity for my own mental health.  I felt really ‘heard’ when he said that.  He recognises that my mental health has taken a real knocking since diagnosis.

Many people who live with a cancer diagnosis speak of #Scanxiety – I’ve previously covered this in my blog.  Yet I couldn’t let my mental health spiral again.  I’d been happier in the last few months & feeling quite good about my life.  So, I focused very hard on convincing myself of two things – that the lump would be absolutely nothing & that there was no point catastrophising until I knew exactly what it was.  Impossible as it sounds, I did largely manage to push negative feelings away, but it took a huge amount of mental energy. 

As I’ve written in previous blogs, the cancer treatment is having a drastic effect upon my mobility, & I couldn’t bear to think that I was going through so much treatment & then for it not to work.  I was frightened about potentially having more powerful treatment & that chemo would most certainly drastically affect my long-term quality of life – I already have very poor circulation, I have osteoporosis, I’m at risk of blood clots & my lungs are restricted.  I remember what my sister had said about chemo – that she wasn’t disabled at all until she had it, & if I could avoid it because there might be only a 6% difference to the predicted outcome, then I should. My sister now has COPD (Chronic Obstructive Pulmonary Disorder), has injections to ease the chronic pain in her bones & is currently receiving treatment for a blood clot.

The day of the appointment came & it was at a different hospital to the one that I usually attend for cancer check-ups with oncology.  Apparently, a few services & departments had been moved around post-COVID in order for the Hospital Trust to cope with the demand of new cancer patients, alongside those needing treatment but caught up in the ‘backlog’ caused by COVID.  My Trust now has a “Cancer First Stop” department – I guess it’s like a triage system.  I was nervous.  I find new medical teams very daunting. 

To cut a very long story short, I’m absolutely ok.

First, I saw a new Breast surgeon & she gave me a thorough physical examination.  She explained that I had a lot of scar tissue, & even though she couldn’t feel anything that alarmed her, she still needed to send me for further tests that day.  She also marked up the area that she wanted the radiographer to check.  That freaked me out a bit because it reminded me of my pre-surgery.  Then she sent me off to the Breast Imaging Department but with lots of words of reassurance which I found comforting.  I’d had mammograms in this department before, so that made me feel a little easier, but my heart was beating very fast & I was furiously blinking away tears. 

When I got to the Imaging Department, a kind colleague of my NHS support person, Margaret, arrived to help, & we went into the ultrasound together.  As I’d only had a mammogram in February & it was clear of disease then, the mammogram part could be skipped.  The radiography team were really supportive.  After two minutes in ultrasound, they had located the lump & they were able to tell me what was going on – they were able to clearly see the cause of the lump – a small amount of fluid.  A completely normal occurrence two years post-surgery.  It made total sense to me that fluid was still left.  I had my breast drained twice after surgery (remember “Alien Boob!” LOL!) 

Then the team checked my armpit as this was very sore, but again, thank God, everything was clear.  I didn’t need a biopsy (& that meant no needle, hurrah!)

I must have said “thank you” a million times over – at least, that’s all my partner was able to hear me saying in the examination room.  I think a lot of the relief came from the fact that it was actually “something” that we had both felt, & not like the other tests & scans where there wasn’t “anything” found.  This might sound a bit strange, but it made me feel like I wasn’t wasting the NHS’ time. 

Then I jumped into a taxi & went straight home.  I cheered in the cab & the driver asked me if I was celebrating something.  “Good news!” I replied without going into detail.  For a few hours afterwards, I couldn’t get over the fact that it was going to be ok.  I was astounded & very, very relieved.

I hadn’t told anyone except my sister & one other close friend what I was going through.  Again, to manage my mental health, & remembering how hard it can be to manage other people’s emotions & reactions, I decided that it wasn’t worth worrying people.  So, I did a few post-result texts to family & close friends, along the lines of, “well, I’ve had a bit of a scare, but I didn’t want to worry you unnecessarily, so I didn’t say anything, & that was right thing to do because I’m absolutely fine.”  I think there was shock because my social media shows me doing stuff & getting on with life, but that’s exactly how I want it to be.

But the next few days I crashed.  I don’t know what I was expecting, really.  I thought I’d be deliriously happy without a care in the world.  I thought I’d be organising a party.  But I just felt really flat & empty.  Like an anti-climax.  I put it down to being mentally exhausted.

But ‘The Scare’ is over & it’s business as usual.

P.S. Remember, anything that doesn’t feel right, a lump or something else, & you feel uneasy, don’t let fear or inertia prevent you from getting checked out.  Please, please, always go.  Don’t dismiss your pain or malaise – or let anyone else dismiss it – including medical professionals.  Be persistent.  Get someone else to advocate for you if you need to.

My partner said several times over that he felt bad about finding the lump & potentially throwing my life into turmoil once again.  I assured him that he’d done absolutely the right thing because he could have saved my life, or he could be giving me a better chance of longer survival through early detection.