21st February 2021 SBC & Me
So I’ve been asked to tell you a bit about my cancer journey, some people don’t like the word ‘journey’ but I don’t mind it, it’s the cancer part that I am not so keen on.
My original diagnosis was in 2010 after I had found a pea-sized lump in my left breast.
This was 2 weeks after the death of my 41-year-old sister from cholangiocarcinoma (bile duct cancer which was terminal at the outset of her diagnosis in Sept of 2009) so it was a very upsetting time. I felt terrible telling my Mum and Dad but I remember Mum saying oh that’s fine it’s breast cancer you will be ok!
So the lump was tiny, the lumpectomy got everything out, the cancer was ER+ and no lymph node involvement which meant I was stage 1 but unfortunately grade 3 which is the most aggressive.
My treatment was at Spire which was a blessing as we had just been through chemo with my sister at ward 1 at the Western and there were too many sad memories. My care at Spire was wonderful with the fantastic oncology nurses available via text or phone 24/7.
I had 8 chemos, 3 different types. My claim to fame appears to be that I managed to persuade my wonderful oncologist, Dr Angela Bowman, to allow me to go on holiday to Spain after 4 sessions of chemo. The nurses wrote a begging letter saying I was feeling sad and that would cheer me up and off we went.
After chemo was completed I then had 20 sessions of radiotherapy with an additional 5-day boost. I found the radio very difficult. I think I was tired of it all by then. I also felt a bit abandoned as I was no longer under the care of the chemo nurses. Also, you see some really poor souls in the waiting room.
I also had terrible burns or ‘skin breakdown’ which took weeks to heal. At that time they didn’t let you put anything at all on your skin to help. There are definitely more treatment options to cope with skin problems now.
Then it was 2011 back to work and back on with life, a different life tho!
Roll forward to 2016, gaily skipping past the breakdown of my marriage after years of physical abuse, a lovely new partner, my girls struggling to cope with the new situation along with 2 house moves, and I now have a never-ending cough.
I attended my GP and was sent for an X-ray but nothing untoward was found. I just kept coughing and trying a variety of different treatments and plodding along. My workmates brought me lots of different cough sweets. I must have been so annoying.
In June of 2016 when on holiday in Florida alone with my girls and one of their friends, I ended up in hospital having surgery for kidney stones. I remember vividly one of the specialists saying to me that with my history and my cough I should be getting a CT scan. We had a laugh and I asked for her name and said I would tell my GP that she had advised this.
So off I trot to the doc who said that the CT scan was the next step that they would want to take! This was an important lesson for me, that we have to be our own health advocates and push for diagnostic tests and treatment with anything that isn’t right.
I was referred to a respiratory consultant who diagnosed me with asthma (which I didn’t have). He also found a nodule on my lung and more or less told us at that time I had secondary breast cancer. Our world fell apart a bit.
I was then referred to a cardiothoracic surgeon who told us that the nodule was very very unlikely to be cancer; it was an incidental find and nothing to do with my cough. We were so pleased to hear this, we thought we had our life as we had planned it back.
It’s at this point I wish I knew more about the type of diagnostic scans available, I would have pushed for a PET scan which would have shown that the nodule in my lung was cancerous.
So the plan was to continue investigating and treating the ‘pretend‘ asthma and to monitor the nodule via CT scans.
9 months later, in March 2017, after one of these CT scans I got the call from my cardiothoracic surgeon to say the nodule had grown and it was now more than likely to be cancer and it would have to come out!
Then things became even more complicated. I was visiting my lovely GP and I was asking if she had heard about the tumour in my lung and she said yes in your breast !! No lung, I could see by her face that something was up, I had been for an ultrasound for my kidney and the radiologist had picked up a suspected tumour in my breast. I returned to my partner who was waiting in the car and could see he was shell shocked by the news.
This news was even more shocking to me as my yearly mammogram only a couple of months earlier hadn’t picked anything up. There was an enquiry into this and the radiologist met with me a couple of times to explain why they hadn’t picked up the new tumour. She advised that if they had known about the lung nodule then they would have made a different decision. This was another learning point for me. There was no info shared between Spire and the Western so they didn’t know I had a nodule on my lung!! I didn’t know I had to let them know, I assumed it was in my records.
So now I had a suspected tumour in my lung which may be a secondary breast or a primary lung cancer along with a suspected tumour in my breast.
To add to the mix I had taken redundancy at the end of 2016 with a view to go contracting and chase the money for a few years. I was due to start back in April a week after the call to say I had a tumour in my lung so that was put on hold. This also meant that my private health ran out in June so if I wanted to go privately I would have to really push things on.
Things started getting a bit more confusing for me here, my lung was under Spire and my breast was under the Western as there didn’t seem any point in me going privately for a few weeks.
My cardiothoracic surgeon Prof Vipin wanted to remove my whole lower right lobe as the tumour was deep in my lung. The surgeon I saw at the Western said ideally it would be lung surgery, breast surgery and then chemo however at that point the breast care nurse kept butting in and said it should be chemo first, I was very surprised that she was disagreeing with the consultant.
Anyway that’s when the fun and games started as every time I went there was a different treatment plan for me, I was told to get all my hair cut as I would be starting chemo next week. Then I went the next week and was told that it would be hormonal treatment, I had cut all my hair, so the Prof got a small slap with my notebook for this unnecessary trauma. The week after that my oncologist asked if it would be possible for me to arrange the lung op, this was after them telling me surgery in secondary cases wasn’t thought to be of any benefit to the prognosis, they now thought this was the best move. I lost a lot of trust in my team at this point as I had been told so many conflicting things and they were changing their minds every time I went.
So I buckled myself in to get nearly half of my right lung removed. It was a bit scary as I was going to be in a high dependency unit after surgery. Also, the day before surgery when I went for my pre op the surgeon advised me the mortality rate was 2%, I was like surely that doesn’t apply to someone ‘young’ like me only to be told yeah it does.
So I got that one under my belt and made a speedy recovery, with just a few complications like my wound bursting open and pouring out fluid, also a hernia where my lung popped out of my chest wall, that was my party piece for a while. My wounds also refused to heal and over granulated, it took me more than 2 months and numerous visits to the nurses before they started to get better.
I then started on letrozole, palbociclib and Zoladex which was very doable.
With regard to the breast lump, again I was told surgery was not advised but my surgeon said I could get a mastectomy but there would be no recon for a while so I would have been very lopsided !! I decided to leave the tumour as I felt that it would be easier to tell if the treatment was working if there was something to monitor. For 8 months or so I went along quite the thing, treatment was very doable.
Then I came in for scan results, I knew the tumour had been changing it felt completely different and I was told with no uncertainty that I MUST have a mastectomy now, it seemed to be a matter of great urgency.
I met with my surgeon and we decided to go down the lumpectomy with mammoplasty route which meant I got a boob reduction too. I was really quite pleased with the op. When I went for a check-up, as again I was leaking so much fluid my surgeon said oh I’ve got your results and it was all good as we got clear margins and the lump was triple-negative, wait, what ?? I had had this lump biopsied and it had been ER+, the tumour had mutated to triple-negative. So now I have a tumour with a much poorer prognosis and the least treatment options, this was a bit of a hard one to get to grips with. I am now fighting 2 types of cancer.
My oncologists started me on IV chemo of docetaxel and carboplatin, I struggled through this treatment. I was in hospital 5 times during my treatments, with my visits lasting from 5 days to 2 weeks. I had sepsis twice, abscesses in my scalp, infected PICC line, shingles, 2 bouts of severe cellulitis and an impacted bowel. There was one time I actually thought I was dying and that they weren't telling me the truth, I called Alan in tears to come to get me, he didn’t !! The next day the doctor came with all the answers to the questions I had had the day before and reassured me that if they thought I was dying they would let me know.
The only upside is I love hospitals and nice nurses so I was reasonably happy during my stays.
After chemo, I was back on to letrozole and palbociclib and enjoyed over a year of being well.
This was my year, I took my girls to NYC for Christmas, Al & I went to Krakow in Feb, I went to Benidorm with my girlfriends in April, then I spent over 4 weeks in France with my oldest friend travelling all over to watch the women's World Cup. My friend who I was in France with was going through a messy divorce so I travelled to Oz to spend 3 weeks with her in Sept. Oct found me in Tenerife for some summer sun, I then returned to Paris for the 4th time that year with my elder girl Laurie for a visit to magical Euro Disney in Dec and then finished off the year with a trip to Prague which my younger girl Holly had got for my birthday. Oh and we also had a few staycations in Glencoe.
Then Covid, my yearly mammogram was due at the end of March, I decided not to go as I had the proper fear of COVID. I also decided to come off palbociclib for a bit again for COVID. In July I wanted to go back onto palbociclib and again things got quite confusing with my Onc she said she didn’t see the point of me going back on palbociclib and she also talked about me being cured! After the call I realised that I wasn’t happy with the advice I had been given, obviously, we would all love to be cured but apart from a very few outliers we all know this isn’t possible with our diagnosis. I decided to ask for a second opinion and a change of Onc, this isn’t within my nature to rock a boat like this but it was one of the most empowering things I’ve done. I met my new Onc in July. He reviewed all my treatment and was able to answer all my questions and alleviate all my fears. I told him that I hadn’t had a mammogram and he called up the department and arranged for me to be squeezed in there and then. I trotted off down for my mammogram, it was actually quite nice to be in close contact with someone after avoiding people for months. After the radiographer took the images she said to me if something isn’t quite right is it ok if we phone you? I know how this one all plays out! I got the call from the cons radiologist on Monday and she asked me to come back in for some more scans and maybe a biopsy the next day. I then went to see the surgeon on 31/07, the day shielding in Scotland came to an end, to be told that I had a 47mm tumour in my breast. So another bout of waiting and more scans. The not knowing is the part I find the worst, has it spread or are we just dealing with a local recurrence. Luckily it was a local recurrence and I was scheduled in for a mastectomy with an implant reconstruction. It was all pretty rushed. My surgeon seemed more excited looking up the book to find the implant he was going to use than to explain exactly what the procedure was I was getting. I still have questions as to what they exactly did, the main thing I would like to know is what the surgical mesh that covers my implant is made of, it can come from a cadaver and I would definitely prefer if that wasn’t the case.
The decision to avoid IV chemo to systemically treat this latest tumour was an easy one for me apart from being very ill the last time, my veins are also awful and I don’t want to be bald again either, I don’t care if that sounds shallow I just wasn’t prepared to go bald again. So I am now on cycle 5 of an 8 cycle program of Capecitabine. The first 2 were awful, I couldn’t understand how others could cope so well with this treatment but after help from Maggies with how to take the anti-sickness and anti-acid along with a dose reduction I am coping fine, I have had one visit to A&E and also a night in the hospital with suspected COVID but it was just a chest infection so I am doing good with this chemo regime.
Is anyone still awake ?? I’ve bored myself to tears!
Things that would have made my journey better.
Knowing to push more for tests when things aren’t right. We shouldn’t have to do this, our GPs should be the ones helping us here but we are the best advocates for ourselves.
Definitely knowing more about diagnostic scans and what they are used for and how they are performed.
Before any more surgery, I am going to insist on knowing more. I woke up after my last surgery with a PCA in place. My veins didn't cope with that and I had an allergic reaction. If I had known they were planning on doing this I would have said no!
It shouldn’t be up to us to ask these questions, the anaesthetist should explain exactly what will be in place when we wake up!
For anyone starting out on this journey, I think it’s important to take time to process what the secondary diagnosis means. We need to take time to grieve for the life we are no longer going to have. I know no one knows the future but we do know that ours now contains treatments, scans and more stress and uncertainty than we had before.
It is also good to know that once you have a team and plan in place that you are happy with things do start to return to normal, you can learn to live again and even make plans.
Fave holiday destinations.
Kalkan in Turkey, the most beautiful little village, with the most fantastic restaurants and bars. Just about everyone that goes here returns again and again.
Glencoe, it’s good for the soul.
Birnam, I am planning on living here at some point.
NYC, I’ve visited here every season and just love this city.
My fave family holiday ever was Playa Del Carmen in Mexico.
The place I want to go to most now is the Maldives, I dream of the beaches and the turquoise seas.
Fave TV Programme
Schitt’s Creek it’s hilarious!
Love Actually, I’m a sap!
I, Daniel Blake
Jo Jo Rabbit
Half of a Yellow Sun
I Capture the Castle
A Thousand Splendid Suns
Hot Mess - actual laugh out loud on buses and also sometimes so sad the tears just fall. The girl who the story is about has lost her mum to breast cancer.
Finding Violet Park (I think it’s a children’s book but I love it)