When life throws you lemons….

There are many options of what to do when life throws you a lemon. A quick Google provides options of making a G&T, lemonade. Even making orange juice just to confuse others. Over the years I think Mark and I have done all those things.

This page will contain my basic musings and ramblings of how we got to this place and hopes for the future. It won’t be in chronological order; I can assure you of that. My mind often jumps from topic to topic. You never know this blog may help me focus.

I suppose the sensible thing to do is a summary of the last year and where we are now. I warn you this will be the longest blog but will provide a backbone enabling me to dig deeper into parts of it at a later date.

Getting the news

Here we are in March 2022. Last month was my first cancerversary of developing secondary breast cancer. Just over a year ago I went to see my oncologist complaining of pain in my ribs. I had been there before, developing radiotherapy damage following my primary treatment. I simply sent an email to his secretary saying that I thought I had popped another rib. But this time at the front and right on my bra band. I was due a routine CT the following month but wondered if he wanted to book me a bone scan too. I had a brief face to face appointment (rare in these COVID times) and scans duly booked. I was fortunate in being able to have both scans on the same morning. First to the nuclear medicine team to have a radioactive injection. Wait 3 hours before your bone scan. This gave me time to nip and have my CT scan. Canula fitted and the contrast administered. This gives a strange warm glow through your body and makes you feel like you need the loo. Other than that, quite speedy and unremarkable. A bit more waiting then back to nuclear meds for the bone scan. This is a longer affair with your arms strapped to your sides and a large elastic band keeping your feet together. The scanner moves slowly and very close to you. Taking approximately 40 minutes to travel from head to toe. Then free to go. I called into Force Cancer Support Centre for a catch up and informal counselling with my friend and running buddy Jayne for a cup of tea. It is always a good and calming place and always beneficial.

Mark and I were in the process of selling the house. It had gone on the market at the end of 2019 but sales had fallen through a couple of times and throw in a global pandemic it was safe to say it had been a bloody nightmare! But finally, we had a serious buyer who understood about buying an older property. So next stop was to check out a reasonably priced storage facility across the city.

I went to the counter and just about to speak when my mobile rang with ‘private number’. It was too soon for results, wasn’t it? I am fortunate to have the same oncologist from my primary diagnosis so know him and trust him implicitly. He had indeed got the results from my CT and wanted to see me on Friday for a face to face (today was Tuesday).

“Oh no, you can’t just say that. Let me know what you can see?”

The verdict was yes there was metastasis in my ribs and surrounding tissue, nodules in my lungs and some in my liver. From a previous scare I knew all about it being treatable but not curable. On Friday we would discuss treatments and further tests. I sat in the carpark, broke the news to Mark over the phone and called Jayne to buy myself a bit of time before I drove back home.

The next few days were a bit of a blur. I broke the news to my family and went into work to break the news there. Too scared to Google I sought out online secondary breast cancer support groups. I found a couple which have been very useful – my favourite being Make 2nds Count. Here I found virtual hand holding while I waited for the plan and the treatments to start. Other ladies facing secondary breast cancer, who made me feel stronger – I can learn to live with this, and I can make the most of this shitty situation.

The plan of attack was laid out on Friday. I was fortunate to be able to take Mark in with me as many couples are forced to be separated. Partners listening intently over speaker phone. Partners unable to reach out and hold a hand in reassurance. Partners struggling to be the extra pair of ears, a necessity when you hear the white noise rather than the facts. Automatically being drawn to the negative rather than positive narrative. Together we understood the plan. Chemotherapy to shrink the tumours. Knocking the cancer back to sleep and targeted therapies to basically starve and keep the cancer sites sleeping. Back on the Denosumab injections every 6 weeks for bone strengthening that I had been given for a year with the radiotherapy damage. I had fared well the last time on chemo so opted for the Docetaxel every 3 weeks rather than its cousin drug which required weekly infusions. I would also have an infusion of 2 other drugs – Pertuzumab and Trastuzumab at the same time too. Over time these latter 2 would be switched to injection form called Phesgo. When I was initially diagnosed in 2016 with breast cancer, I had 2 different types. We needed to know which of the malevolent bastards had returned. We would do this with a liver biopsy which would be booked for next week. This would dictate if I was to be given hormone therapy in the form of Aromatase Inhibitors, a daily tablet to add to the cocktail.

Bloody hell that biopsy hurt. The tumour was sitting right under my ribs. Bones are not very clear on the ultrasound so every time my ribs were touched, I hit the roof. The local anaesthetic did nothing to touch the pain. I started with a sharp intake of breath and ended up with quite a lot of choice swear words as he wratched around to get the clearest sample. Finally, with me hissing “Just take the f*ing sample”. Click – sample finally taken. Followed by my first hit of oramorph, and back to the ward for 4 hours of bedrest to minimise the risk of bleeding. I had been worried about lying still for such a long time. After being harpooned and drugged it was all I was able and wanted to do. I plugged into a BBC Sounds comforted by Dr Rangan Chatteree. Listening to positive steps to holistic wellness. Thinking about the steps I could make to run alongside the medical onslaught.

Selling the house

Amidst these few days Mark asked me if I wanted to go ahead and sell the house. Moving full-time into BoobyDo our converted horsebox. A dream we had had for a few years. This would enable us to pay off the mortgage. Rid ourselves of debt and enable us to travel, live a life in a simpler way. “Hell yes!”

We had basically bought a house with our hearts and not with accounting heads. Hindsight always makes you a millionaire, but it is nothing we can change so the bare facts are. We bought at the wrong time. In a location that hadn’t boomed when others did. Had been advised to take out the wrong type of mortgage. Both had faced employment disruptions in one form or another and this meant the best way to pay it off was by either of us dying. Neither of us were heading off soon! Could we have rented the house out? No, the house dated back to the 1760’s and so had warts n’ all. It did not make financial or practical sense plus part of the aim was to be as stress free as possible. Having that tie wouldn’t allow for this. So, the sale continued. Going from a 3-bedroom house to an 8m converted horsebox meant a huge pare down of stuff. We had been paring down for a while. Selling the best stuff at flea markets and car boots. With Covid that had stopped but we did sell or offer things for free through FB Market Place, to friends and family. We donated lots of stuff to the newly opened charity shops and recycling bins. Unfortunately, some things went to the recycling centre, separated to minimise the amount going to landfill. We had the storage unit to keep the things we couldn’t bring ourselves to get rid of. Paintings, sentimental keepsakes, Christmas decorations, books, and a couple of bits of furniture. This is no larger than a shed, so we had to be selective. A great help was the weekend when Graham and Tracy came to help. Tracy was fabulously ruthless.

“Do you want to keep?”

“Yes”

“Why?”

Slight dither and away it went. Graham helping us fill the car. Then across town to unload at charity shops or sorting at the recycling centre. This gave us a much needed kick up the arse and the more we cleared the better it felt. Steps to a simpler life. Something we could take control of. All this was interspersed with work, finding a way to live with a life-limiting illness, blood tests and four of my planned six sessions of chemo sessions. We went from February to May.

May brought many anniversaries and milestones: I would have my first scan to check if the cocktail of drugs were working. Two gentlemen would come and film us for an online documentary about folk who make life changing steps to living in an alternative way. Many birthdays including my own. We would also face the first anniversary of my mum passing away and last, but not least we would move out of bricks and mortar!

We timed completion date for when my immunity was at its highest. Just before the next round. This is when I would also have the most energy. But those that know me well will know that when I get the bit between my teeth I will just keep plodding doggedly forward! Yes ok, let’s face it I am stubborn! We completed on Friday 14th May. The same day that I would get the call with the results from my scan and the day before my birthday.

“What if the scan results were not good?” rang round my head. I replied to myself “I haven’t got time to consider that, and we will just have to face that if, and when we get that news”. At 10.00am I sat on the stairs and cried with relief when Dr Stephens said the tumours were reducing after the first few rounds. He expected them to further reduce with the remaining ones and the ongoing hormone and targeted therapies. Fantastic news. I reassured him about our move onto the lorry and was grateful once more that he understood why we were doing this crazy move and supported us in this endeavour – either that or he is just too polite to say “WTF?”

It was with a sense of relief and joy we left the house. We were absolutely shattered physically and mentally. Tearful with a range of emotions but on the whole, excited that we were able to do something different with our lives. We would be debt free, able to make choices around jobs and location in a lot easier way. Opening up the possibilities of adventure. Adventures that would need altering as lifelong treatments continue as long as the cancer was being kept sleeping and as long as I was able to withstand those treatments with their various side effects. I still hadn’t decided what to do about my job. It was one I loved but not something I could do and travel. That was for a decision for the future. For now, I was being accommodated and able to do some work from home (or Boobydo). I wasn’t sure how long this could continue or how long I felt able to it. Just take one day at a time.

Adjusting to a new life

Our first port of call was a wonderful park up at a friend’s place. Parking up on top of a hill beside her eco home and business, looking out over the Devon hills was glorious. We knew we could stay till August. That was a fantastic gift to us both. This would give me time to finish my final rounds of chemo. Time to rest and restore. Time to plan and dream. Time to do the final clear out of the rented council garage which was stuffed with things we hadn’t yet fully sorted! We were out in the countryside, watching the buzzards souring overhead and grasshoppers in the grass. The hum of bees in the community hives just over the fence. We are eternally grateful for that time, and I will talk in more detail in future blogs for sure.

My chemo came to an end in June and thankfully the new format of Pertuzumab and Trastuzumab was available in injection form. An injection given over 5-8 minutes in your thigh every 3 weeks is a stingy but worthwhile trade-off from a canula and intravenous infusion of the 2 drugs which can take time on a busy chemo ward. Added bonus - my care switched to a small outreach hospital. Free parking, greeted with a cup of tea and a biscuit by the Force volunteers. The ability to develop a ‘new norm’. Blood tests are reduced to every 6 weeks before the bone strengthening injection. The choice is do you have it injected into your tummy or your bingo wing? I opt for the latter.

As I gained more stability, unfortunately my father’s health declined. He also had cancer but had opted from the outset not to have chemo. (Unlike mum and I who take everything we possibly could). He had done surprisingly well in the first year of mum passing. Between us we overcame hurdles as they were presented to us. Wearing a snood rather than a mask as these knock out hearing aids and glasses. Wiltshire Farm Foods for days you don’t feel like cooking but want to remain doggedly independent (yes, it is a family trait!). From the summer dad became very unwell, defying the odds and having Sepsis twice as well as other infections. He really didn’t want to continue, each hospital stay taking some more independence from him. We travelled as far as we dared in August and September. We had tickets for a couple of festivals. Opportunities to catch up with family and friends. Plus, my cousins wedding up in Yorkshire. A 100km sponsored Thames path walk (I had booked in 2020 Before Covid and my diagnosis and was too tight to loose £50 by cancelling). Celebrating Mark’s 50th birthday on a vintage sailing boat with friends and family. It was a tricky time. Balancing your own mortality, your altered plans and dreams alongside my dad who just wanted to join my mum. But his body simply wouldn’t let him go. He was annoyed at himself for disrupting things, which is silly as it cannot be helped. Somehow, we managed to balance. Making sure we didn’t regret either staying close by or venturing off on short expeditions. When I now look back I think wow we crammed in some stuff!

Ilkley for the wonderful wedding of Fabienne & Alex

Beautiful Days festival with Anne-Marie, Keith, Paul & Marilyn

Finally coming to Henley. 100km in 2 days

Sailing on the Pilgrim to celebrate Mark’s 50th

We found a couple of different campsites not far from Exeter. Giving me time to consider work further. I had now gone off sick as I struggled to change my habit of dealing with short term projects like a bull in a china shop. To the admission that I was now in the midst of a long-term project. This project being how the hell was I going to live for the longest time? Coupled with wondering where did I want to use my limited energies and time?

I had a very strange phone call one day from occupational health.

“Tell me why you are off work?”

“I have secondary breast cancer which has spread to my liver, lungs and bones”

Slight pause from him “Oh!” another pause “Are you seeing a doctor?”

Later I realised the opportunity of sarcasm, I should have said “no, I am seeing a vet!” But in a bit of shock, I politely said “yes” and went on to explain about the treatment and the scans.

He asked me “How long will you have treatment for?”

“Forever, its terminal”

“Oh, do they monitor you?”

“Yes, I have scans and blood tests?”

“Do they scan all of you?”

“No, I don’t want my head scanned ‘til I present symptoms”

There were other equally odd questions but basically the call ended with him saying that he would normally help people back into work but that didn’t look likely for me. I put down the phone upset and disheartened. I awaited his report before meeting with my boss, David. I was dreading this after the phone call. Already condemning myself to the scrapheap. However, we discussed the possibilities of retiring from my current role and going onto a more supportive role of verification, mentoring and course development. I was hopeful that we could achieve a balance of mental challenge, financial stability and flexibility. Within days we had the backing of the college. Things were looking good.

Death and decisions

Dad’s health declined once more and after his final stay in hospital he vowed he wouldn’t go back in. I couldn’t blame him. Covid visitor restrictions and delirium really don’t make comfortable bedfellows! When he did take another step down, we were fortunate in being able to get him into the hospice. Here he spent the final three and a half weeks. His health and mood were up and down. But Sarah and I were able to visit, spend time with him and be able to be his daughters again rather than carers. Invaluable support. Our 100km walk raised money for Hospicscare. A small drop in the ocean for the love and care shown to our family. Dad passed away on December 11th.

While going between the campsite and the hospice I picked my way through retirement paperwork. The trouble is at 52 the only option for retirement is ill health retirement. To do this you have to meet with an occupational health doctor for them to write a report on your ability to work. That report read well. It discussed the fact that I couldn’t continue within my current role. That there were possibilities of other things I could do. I filled in my parts of the paperwork and college did their bits. I sent it off and waited. Just before New Year the verdict was returned. I had been granted enhanced ill health retirement which mean that I would receive a lump sum but would not be able to do ANY gainful employment. So, working as a verifier was out. Indeed, working in a shop, café, as a campsite warden were all out. This was quite a shock and left me thinking “Shiiiiit, am I really that ill?” I did what I have done for a while and that is just sit with the feeling. Let the feeling bubble up and slowly think of what you are going to do about it? Right after New Year I advised college I may appeal against it so not to do anything else till I advise them. I spoke with a friend who had been an HR director. Investigated the finances as much as I could. Tried to seek a financial advisor without much success, finding it lacking for someone in my situation, coupled with such a meagre pension pot. Macmillan were the most helpful and even though we couldn’t discuss my specific issue I was guided to the fact that this was a one-time offer of this lump sum and maybe we can push back at a later date. Still, I sat with the decision, nervous to complete the final form.

We were also keen to visit Ireland to catch up with Mark’s dad and other family members. Along with college friends of mine. We needed to fit our trip around my ongoing treatments. Initially we thought we could get my treatment transferred to Northern Ireland, but this was proving too complicated. Well actually that is an understatement! It is bloody impossible. Even though we are a United Kingdom the NHSs in the different countries are not. They do not ‘speak’ to one another because the NHS numbers and H&C numbers do not allow it. The only way this could be achieved would be to come completely off the books of my GP and oncologist in England (both of whom I trust implicitly). Then, get a GP and oncologist to take me on in NI, move notes, meet, agree on treatment transfer, schedule appointments, possibly get new scans and bloods. Then hopefully have the 2 injections and do the same in reverse when I go home, trusting that a bureaucrat in the middle would allow me back to the same team I had left. Too risky, too scary, (it makes me feel panicky to just type it). Decision made. I would fly back for my treatments. Yes, it is inconvenient and costly but so much better than the alternative. Especially as my last scan shows the treatment is continuing to work and keep me stable.

In mid-January, I received the news that one of the main ladies who helped lift me when I first joined Make 2nds Count had died. We were of similar age, she had a family, lots of friends, a real caring and feisty spirit rolled into one. We had met on Zoom chats and she always made us laugh. She took the time to comment on our posts and had private chats with many of us. Then gone like that, all too soon. A kick in the face about how crap this disease is. I couldn’t sit on my decision any longer I have too much shit to do! Following this shock I rang the college set the date for retirement, sent the form to the pension firm and booked the ferry to Ireland. There is time for procrastination and there is time for JFDI (just f*ing do it!). I am writing this in Ireland. We booked the ferry out but not the return trip. I will fly back for 3 rounds of treatment. In the meantime, we will see as many people and places as we can in a large blue converted horsebox camper.

How did we get here?

Identity crisis in Galway