Don’t Worry, It Won’t Happen To You…Until It Does
None of us could have predicted the impact of the global pandemic and its aftermath and yet, for some of us, it didn’t end there. If you believe in astrology, you know that certain alignments come once in a lifetime and sometimes there is no cosmic or rational reason for the things being thrown at you. Nothing could prepare us for the events that would leave us in the position we are today.
As many others around the globe, we were furloughed, a situation that lasted for me longer than my husband David who was lucky to secure a contract to keep us afloat as our IT business that we had built up over 10 years became a victim of the combined forces of Brexit and Covid. We began the gruelling task of closing our business down. For extra income, we sold some of our things on eBay, sold other things we bought cheap at auction that had good mark up potential and there was what little writing income I could muster up. It wasn’t easy but in the near 23 years that David and I have been together, we have had our financial peaks and troughs. Despite growing up at times with very little, looking back, our parents always made sure we had what we needed. We both learned from our parents how to survive and how to stretch pennies into a few meals. Marriage is team work and hard times mean working together for the best outcome for your family. It’s not something we have every shied away from.
Just when things were looking up for us, David was diagnosed with squamous cell carcinoma of the rectum. It’s a rare form of rectal cancer usually seen in only a handful or so cases in the UK per year. This form of cancer is one of a few found to be linked to HPV. HPV in men can linger undetected for a long time with no to minimum symptoms ever manifesting. It has been a cause of concern amongst health professionals worldwide concerning men and cancer. The rollout of the HPV vaccine in the UK is only available for those under the age of 45 making both my husband and I ineligible for it. If you are a man under the age of 45 currently reading this, please go and get vaccinated – it might just save your life! The link to cancer is very real; our National Screening Policy is too weak to consider risk based factors; and the awareness of this correlation is too low amongst the LGBTQ+ community. The vaccine is available free of charge. We urge you to take advantage of it. A quick Google search will tell you the risks of not being vaccinated and if you can lower your chance of cancer, please do so. Cancer is a thief. It not only takes from the person affected, but all those around who care for them.
Scans showed that the tumour was growing at such a rate that the NHS priority list at only a matter of weeks was still too long for him to wait and the tumour would have likely been inoperable in that timeframe. Luckily we had somehow managed to continue paying for a private health policy through everything the last few years and this proved to be worth every penny scrimped and saved elsewhere. The private health insurance didn’t mean some magical team at a private hospital were waiting for him. It meant the ability to coordinate the necessary 17 highly trained specialists needed to work over a weekend to perform his operation at a NHS hospital specialist cancer centre.
The same week we were told about the urgent need of surgery, our accountant who had been dealing with closing down our business died of the same cancer my husband was diagnosed with leaving the paperwork in a mess. To add to that (what did I say about cosmic alignment?), our landlord had decided to give us notice on the house we have lived in for 8 years.
I was now a full time carer supporting my husband’s heath needs as he continued to support us by working through the pain, the cancer, to keep money flowing in so we could face the financial unknown in the coming months. He worked until the day before he was admitted to hospital. With no income from work and me unable to work as I was now a full time carer, our income would be limited to whatever we saved, plus hubby’s PIP and my carers allowance. Not to mention, we had the impending move to consider and crippling debt mounting up.
Now let’s pause for a moment.
If you are dealing with nothing but cancer, that is a lot. Throw the rest of it on top of it, it was too much. I can’t tell you the amount of times I wondered who was in possession of our voodoo dolls. The simple truth was that we were drowning. We found ourselves navigating a complex web of a less than friendly benefits system which we may or may not be entitled to. The jury is still out on that one. Even with the cost of living crisis, family and friends have helped where they could. An act of such generosity, that we remain in awe at the love and support that surrounds us. We also reached out to organisations and charities who could help or offer advice such as Macmillan, Maggies’, the Citizens Advice Bureau and Cancer is a Drag.
The operation that he would have to undergo could only be performed at Southampton General Hospital which was a 6 hour drive from our home in Cornwall. He would require a minimum 3 weeks in hospital with a further 3 months at home recovery and rehabilitation. We had put aside some money for the trip to Southampton but nothing could have prepared us for the reality of the surgery and the necessity for me to remain in Southampton (where I still am as I write this). The operation took a total of 21 hours to complete followed by nearly a week in ICU.
The NHS is full of wonderful and brilliant people but as we know, there is not enough of them and in hubby’s post surgery state, he needed an advocate to remind the staff that he was still there and his needs had to be met. This is not a dig at the NHS staff, it is a reminder that they are overworked, understaffed and under paid which makes their job near impossible at times. He also needed someone to bring him supplies from the outside world like clean clothes, snacks and anything else that the hospital staff could not provide as well as the emotional support necessary to progress from the post surgery stage.
Whilst my wonderful in-laws looked after the grandkits (our 3 cats) back in Cornwall, I set up base in Southampton, flitting from affordable hotel to affordable hotel as an Air BnB was too expensive to rent long term. With money dwindling, each morning was spent battling creditors, working with debt advisors and trying to find grants or any funding I could to help cover the cost of remaining in Southampton and being close to my husband to support him. Each afternoon was spent in the hospital with him until the very hour I was told it was time to leave.
Many years ago, hubby and I had been in London and we went to see Rose Garden, a drag performer we had loved since our first days in London together. Unbeknownst to us, the show was a fundraiser for Cancer is a Drag, a London based charity set up by founder Alan Bugg, a cancer survivor himself. Their mission statement according to Alan is as follows: “Cancer is a Drag is a small independent registered charity (Reg. No.1160129) that provides financial and well-being support to people living
with cancer (inclusive of partners, family, and friends) to give them a lift, put a smile on their faces and stop cancer being any more of a ‘drag’ than it already is. It enables our beneficiaries and their families to deal with the disease and its very difficult treatments without having to worry about money, paying the bills, buying new
clothes, transport costs, and the like. I reached out to Cancer is a Drag and they did not hesitate to help us in our situation.” I am still able to be in Southampton, support my husband and provide the necessary things he needs because of their generous grant.
It is kind of ironic given the current anti-drag rhetoric both here and in the US that it was a drag charity that answered our call. There was no judgement and no degrading hoops to jump through to get help. They showed us the kindness and compassion necessary when you are dealing with cancer. Drag has always been a force for community activism and care, something even many in the LGBTQ+ community forget at times.
As I write this, I am sitting in a hotel in Southampton and hubby is still in Southampton General Hospital, each day getting better and closer to us being able to return to Cornwall. Initial pathology has shown that the surgery has worked and that he is on the road to being cancer free. Nothing in the world is better than that, nothing more beautiful than those words “good margins”; the chance for many more years of happiness together. For the time being, that has to be our focus, the fact that he is still alive and we have a chance to continue our life together.
The road ahead for us is not going to be smooth as we have to navigate David’s recovery, wait to hear on benefits, social housing and whatever else the unknown has to throw at us.
We don’t like to think that these things can happen to us, but they can and they do. Most of us are closer to the gutter than we are to the house on the hill. Even the greatest financial planner can’t plan for the alignment of events that befell us. No one likes to think about these things but at some point, we all should.
Still, remember the wise words of Oscar Wilde, “We are all in the gutter but some of us are looking up at the stars.” David and I certainly are because we have too. When you are given a second chance, you make sure you aim higher than you ever did before.
Please visit Cancer is A Drag to discover more about their work www.cancerisadrag.org and www.facebook.com/CancerisaDrag. Plus, do not hesitate to get in touch with them by phone at 07719 082655 or email at
info@cancerisadrag.org if you need support or wish to support them.
I would like to thank David Lugo-Trebble and Alan Bugg for their contributions to this article.
