Day 449

And this my friends is ‘The Trouble With Triple Negative’……. It does exactly what it likes.

More unexpected and disappointing news this week when I visited my oncologist. I found out there are now ‘tiny pulmonary nodules that have increased in size slightly’ plus that the lymph nodes in the centre of my chest are also slightly enlarged. I now have to wait 6-8 weeks for a PET scan that will hopefully provide further information as to whether this is metastatic disease (the cancer has spread to my lungs).

The good news is that the lymph nodes that have been left behind in my armpit have shrunk-likely due to radiotherapy.

And poof just like that, expecting a conversation that treatment is coming to an end but no, another scare. You may remember I have been here before with my liver and that turned out to be a cyst.

I’m sure you will all appreciate this is a very stressful time for us as a family, so as to minimise stress to the maximum I respectfully ask you not to ask me questions if you see me in the street. I am working on a ‘Whole Life’ approach to dealing with my cancer, and part of that is to reduce stress in my life. And I certainly don’t want to discuss the prognosis of a potential stage 4 diagnosis in front of my children.

For now I am self preserving, healing, eating well, meditating and taking all my meds. You should see me with a smile on my face.

When any future challenges present themselves I will deal with them accordingly.

As ever so much love to my husband, my cheerleader and best friend.

Thank you to Penny Brohn UK for offering support to people like me, their approach resonates in many aspects of my life.

I’m still here, and still rocking the funky hair!

Fight day 428, is it over yet?

428 days since that first cut of the knife and the first time I was told the cancer was all gone……. The second time was 18th March this year when I went back for more surgery on the ‘gone’ cancer that actually never had gone…… We are now awaiting the results of yet another scan as there is evidence I have residual disease in three lymph nodes that haven’t got the hint they aren’t welcome.

I’m told three lymph nodes surgeries might not be possible with my current surgeon, but as the rest of my team have bullied him into seeing me I will see him, and if needed I am not afraid of asking for a second opinion.

A lot has happened these past couple of months. I completed 15 rounds of daily radiotherapy. They passed by and then I was hit with fatigue and I was diagnosed with anaemia, so a couple of weeks of rest and iron tablets and I was feeling better. Then came the burns, kinda like delayed sunburn. Imagine your skin going black and peeling three weeks after your Caribbean holiday and you might have an idea how it felt.

I took a pic everyday as a memento.

And then I moved onto 🤞 the last stage of treatment (apart from the outstanding question about the nodes). A chemotherapy drug called Capecitibine. It’s used in many ways but research has proven it can improve outcomes for triple negative patients, especially tricky ones like me!

Blood tests and the usual chemo prep and we find out I’m in the bottom 5% of the population with a DPD deficiency. This is a liver enzyme used to break down the main ingredient of Capecitibine and because of this I had a 30% dose reduction to help combat any severe reactions (yeah right). I should have known at that point I was walking into trouble, after all my body is ridiculous.

So I managed four doses, Tuesday am and pm, and Wednesday am and pm. I thought I was winning. No mad dashes to the bog, horrific stomach pain or aches and pains in my feet. I even went out on the Wednesday it was all so unremarkable! But alas I was in a false sense of hope, I woke on Thursday morning with horrific chest pain and long story short I spent the following five nights in hospital on a heart monitor!

After much confusion with many cardiologists, and finally when I was discharged two completely disagreed with each other about the diagnosis. It was diagnosed as coronary artery vasospasm, where the artery constricts like a heart attack, but returns to normal and the pain passes. The other theory was heartburn of the worst kind-but this didn’t sit with some of the symptoms nor did it explain the changes on my ECGs……. Either way it was caused by the Capecitibine and so it was stopped.

So the latest from my oncologist is that once this lymph node query is resolved I might actually be finished with treatment. Here’s hoping…….

In other news, at least I had cool hair whilst in hospital, forever grateful to my hairdresser and his team for their love and support.

Fight day 360……

So, my treatment officially started 360 days ago and has no signs of ending as I go into radiotherapy and then back to chemotherapy.

We’ve been on holiday, and had an amazing time just relaxing and ‘going with the flow’ which we don’t normally do. I conduct myself on holiday as I usually do at home, rushing from one thing to the next. Barely even resting. Well I’m pleased to say apart from breakfasts I only actually prepared one meal for my family during this holiday. I am a well rested mummy.

We barely even made it onto our returning plane when my Macmillan nurse emailed me, crashing my reality of cancer back into my mind. They wanted an urgent CT scan and I was to meet the new oncologist for radiotherapy……. Why?

We all know that cancer provides us with a changing landscape, a rollercoaster. Ups and downs. During one of these downs they said they were pretty certain I had metastatic (mets) disease in my liver, the cancer had spread. I turned to my online community for support, for words of hope. To talk to ladies who live with stage 4 cancer, in preparation to join them. Two ladies reached out to me, Nicola and Alys. All three of us were having liver investigations in the same week (early March). Sadly for Alys and Nicola they both had mets, and I was negative. I still spoke to them both, offering support and sharing with them research I had done into alternative treatments for triple negative.

Both Nicola and Alys lost their fights in the last week. The sky has gained two beautiful stars and still the world turns. Their family’s landscape has now changed and the ripples of the loss are felt in our online community.

So it transpires that due to the delay between surgery (18th March) and radiotherapy starting (was tomorrow 12th June) that they wanted to check I’m still NED. That NED is still in the house. That my body hasn’t gone and let us (me) down again. I had the scan yesterday and have spent the past few days in a state of terror, utterly exhausted. When dropping my son at pre school this morning, squeezing him super tight, no one noticed as I shed a little tear of despair that his life might have been just about to change irreparably. That his mummy might be given the news she had stage 4 cancer. I’ve received this news before and I can say I didn’t like the way it felt, I didn’t like the thoughts it gave me-vivid thoughts of how it was going to be getting sicker and sicker.

And so I went to see the new oncologist today. I entered the room and my Macmillan nurse sat there…… Fear took over and I said “why are you here?” As she usually only attends bad news/planning appointments. She hastily replied she was free and thought she’d stop by. The doctor barely introduced himself when he immediately told us the scan was reassuringly still ‘no evidence of disease’…… And so there we have it. Maybe all the things I’m doing are helping? Who knows.

Radiotherapy has been pushed back to start next week as he isn’t happy with the potential dose my lungs are going to receive. I feel supported. My medical team have always made me feel like me and my care are important to them.

And so as I sit in my happy place this evening and enjoy a cup of tea listening to the bird song I think of Alys and Nicola. I will live my best life and be happy.

Rest in peace warriors.

Fight Day 342

So let me tell you a story about cancer, and getting back to ‘normal’.

The thing is I used to crave so desperately my ‘before’ life. I was happy, content. My parents were moving down the road which meant I could support them with my dad’s failing health. I was volunteering. A good friend and I had a self employed business on the go and we had (have) ideas. Some great ones! So many people said what a great idea we’d come up with and it was going well. I am blessed with two beautiful children and a husband whom I adore. Life was good.

Then cancer.

People talk about the help you can receive with ‘moving on’ and ‘life after cancer’ and I was always confused-I’d just go back to my old life?

And then it hit me (whilst at a Breast Cancer Care conference).

There is no going back. That life is finished, done with. That normal is the ‘old’ normal.

So now I seek to understand my ‘new’ normal.

I’m broken and damaged, inside and out. At some point in the last year (not sure when, it just happened) I stopped looking forward. Motivated by the excitement of a weekend away, day out or some other fun. I used to make notes. That stopped.

So now I understand. I’m not confused anymore. I’m a different person. Cancer has changed me. I’m not feeling negative or depressed, just realistic. Now I get it, what they all mean.

There was a life before cancer, and there will be a life after cancer. Albeit a different one. I have stopped looking back, and seek to go forward instead.

Fight day 332

If you ever wondered what a cancerous tumour looked like, here it is!

I recall this day, exactly one year ago today. And following the mammogram and ultrasound to which I said to the sonographer “That’s not a cyst, is it?” It was not, she confirmed. A biopsy was taken.

I was not scared.

I mean, the idea of having cancer was so utterly ridiculous, it couldn’t be possible (could it?).

And so I navigate the anniversaries, they all come as reminders that a whole year has passed. Poof, just like that.

I remember being so desperate for treatment to be completed by Christmas, so I could try and get my life back. Fast forward and I’ll be lucky if I’m out of treatment by this Christmas.

Day 332 since treatment started, and counting.

Fight day 313

NED has come for a visit…….

He is an elusive character, a fable, an old wives tale that all cancer patients are seeking.

No Evidence of Disease. NED.

So, all my cancer has ‘gone’. I’m in remission you might call it. But I’m taking nothing for granted and making a lot of changes to ensure NED stays.

He is a very welcome guest to our home, and we want him to stay……….

Fight Day 309, Still here!

Woo hoo! I’m still here, just been a little quiet lately.

Post operative recovery I would say has gone well. The op sounded straightforward, moreso than originally discussed. And the absolute worst part of being in hospital was 100% the drain. Christ alive. I can only imagine that would be what it felt like to actually be stabbed-with a red hot poker. I have never known pain like that, I was actually crying and whimpering! Then the fool I am partied on the oramorph and was sick in the sink minutes after I was discharged……

I developed a sizeable seroma (fluid collection) behind the wound, but that has subsided now and is far more comfortable. The weird shooting pains and sensations have also passed. I am just left with a weakness on my right arm and a fairly large numb area, keeping everything crossed that through yoga I can stretch this back out and get my strength and fitness back.

The follow up appointment post surgery was interesting. There were three areas of active cancer in the breast tissue, whilst this news was disappointing I was not surprised as I had my suspicions. They removed 14 lymph nodes (so 17 removed total) and we were advised that 7 had cancerous cells in-some microscopic. Since this meeting my clinic letter has come through stating it maybe have only been in 3 nodes-so we are seeking clarity about this on Thursday at my next appointment!

I decided whilst recovering to get some funky colour popped into my hair, it has since faded and will be re-done this week in a new colour, I will post an update!

I’ve enjoyed a lovely half term with my two rascals, on the whole feeling ‘better’ although I totally underestimated the fatigue after daily trips out for two weeks. We’ve made some precious memories and genuinely had a lovely time, but for my own well-being I’m looking forward to them going back to school. I’ve made it to the end of the two weeks not feeling unwell, but not quite right. So now I need to focus on trying to get my head round what cancer has done to our lives.

I have oncology on Thursday, and a nutritionist and private oncology clinic the following week whilst we plan an anti-cancer strategy. Although it sounds like my next treatment will be radiotherapy.

I’ll try not to leave it so long next time!