Positivity

“Stay positive.” As a cancer patient this is perhaps the only consistent piece of advice offered by everyone; doctors, surgeons, complementary therapists, mentors, counsellors, friends, family…everyone. By remaining positive you already win half the battle. It’s what helps give you the energy needed to withstand bad news, poor test results, major surgery, gruelling chemo. Positivity, everyone tells you, is key.

This is sound advice, the mind and the body are inextricably linked and in my experience positivity led by a determined mind is what drives physical strength.

Yet there are times when the whole notion of positivity feels shambolic, pointless, impossible. I want to scream at the advice and tell whoever has offered it to take positivity and shove it somewhere unpleasant. This might be unfair, I know people only want the best for me but cancer patients can often find themselves tested to such extremes both physically and mentally it would be easier to run six marathons back to back than even begin to start looking for the “p” word.

In these times I think it’s incredibly important patients don’t beat themselves up about not being able to find positivity but to allow themselves to feel whatever emotion it is they are feeling be it grief, despair, fear or negativity.

No one patient can be positive at all times. It’s an impossibly unfair ask.

And so to an update on my current situation. As some of you might be aware I recently spent eight weeks in hospital following flare ups again from what I thought initially were my usual adhesion pains.

It began with two back to back trips to St George’s a&e. Having assumed I was suffering from my usual adhesion pains I allowed nurses and doctors to pump me with morphine before prematurely discharging myself against medical advice in the hope it would ‘just get better’. It did in the past and so Sophia in her typical pig headed wisdom decided she knew best on these occasions. After all I had Wimbledon tickets and a work summer party to attend plus I’d bought mum surprise tickets to see her favourite singer, Barbara Streisand, having secretly promised myself I would one day find a way to make this happen. Sadly though as much as you repeat the mantra in your head of ‘bugger off cancer you won’t ruin my fun’ it turns out cancer doesn’t like to listen, if you’re ill you’re ill and whilst I was able to make some of these events, in the end unbeknownst to me a long stint in The Royal Marsden would be my next move as we discovered things had slipped quite badly for me from the stable position we all assumed and hoped I was in.

I was rushed into the Royal Marsden and sent for several scans to try to get to the bottom of these latest flare ups. We already knew that there had been a new growth in my cervical area and I was in the process of gearing myself up for a change in treatment plan, back to big gun chemo. However the latest scans revealed two things we really weren’t aware of; the first was that I had a serious bowel obstruction and the second was that there wasn’t just a growth in the cervix but widespread, extensive growths throughout my abdomen, lymph nodes and bones. Naturally as a family we were completely devastated with the news. We had suspected a bowel blockage but other than that we assumed the cancer was under control.

Unfortunately when it feels like you are circling the hole like this you have little time to grieve (plus I really am so very bored of crying) so it was time to establish a plan to determine my best way through this latest problem. It was clear big gun chemo was needed ASAP however whilst the blockage remained in my colon my oncologist believed it was too dangerous to contemplate such gruelling chemo.

Surgery to resolve the problem would be major and would result upon further delays of receiving chemo so the first three weeks in hospital doctors decided to give the bowel complete rest by shutting it down in the hope that the blockage would resolve itself thus avoiding surgery. This meant three weeks of no food and small sips of water. Frustratingly however my bowel was not down with the plan and so reluctantly in to surgery I went.

Whilst the surgery was a success by the time I was healthy enough to be discharged following it, I had been an inpatient for eight weeks which was an incredibly hard position mentally to bounce back from, particularly as I left the hospital in gruelling pain with difficulty walking. Would things get better for me? Honestly I still don’t know the answer to this.

Still, with everything in life, where there is a negative there will nearly always be a positive and there have been positives during my stay I am ready to write about and acknowledge.

Firstly of course there was the sea of visitors and gifts that flooded my room; flowers, homemade joke books, jigsaws, teddy’s, colouring in books, recipe books, sweets, jewellery, pens. The list was endless. Of course the gifts are one thing but more importantly it was the time you gave up to visit me, sit with me, hold my hand through bad news and make me laugh when I didn’t think laughter could be possible. Friends, you deserve your own blog post really and I promise this is on its way.

Next is my extended family. I often talk about the wonderful unit that is my mum, dad and brother but I rarely discuss my wider family. Over the last five or so years in particular I have grown extremely close to my grandma as I ended up living with her when I first moved to London. I was thrilled that my mum’s cousin took time out of his day to pick her up from Luton and drive her into London to see me. What a treat to see her although secretly I wished I was at her house making her a cup of tea ideally on a Thursday night as we both sat tentatively waiting for Question Time to start. I love watching this program with her witnessing her become increasingly cross with how words and phrases are manipulated to benefit the person speaking at the time. We share similar political ideals so fortunately the disagreements don’t extend into her lounge! Still it had been weeks since I had seen her so it was wonderful to spend any time with her.

Im also fortunate enough to have a third grandma in my life called Auntie Sheila. She has always been the slightly loopier gran in my family, picking me up from school in her mini, driving with no hands on the steering wheel at times (fortunately she no longer drives), or sliding down the bannister when she saw an opportunity. Whenever we were in a department store she would make sure Ben and I left smelling radiantly with a squirt from whatever the latest scent was being pushed by shop assistants.

Unfortunately she knows cancer only too well having lost her husband to the disease at an unfairly young age. She gets it. Her support for our family throughout this has been and continues to be everything and more you’d expect of a grandma and I love her dearly for this.

In recent months though the family that have surprised me the most is the extended family I have on my fathers side. He has four sisters, two of whom I met once years ago but the others I have never met. All of them have rallied round my family in a way I don’t know I could ever thank them for. They don’t just message me but more importantly they call my mother and father daily, making sure they are ok, keeping their spirits lifted and reminding them we have their support any time. Sometimes people forget that it’s not just me dealing with this, my parents are living their worst nightmares and to have family hold them is a wonderful comfort for me. My aunties in Sweden are desperate to drop everything and come to the UK to help nurse me for a few weeks and help lighten the load for my family. What a generous offer. I know we could ask them for anything and within a moments notice they would do it for us without question. How incredible that family I don’t really know would do all that and more for me and my family. Whilst I know I can never repay them for all this kindness, I hope one day I meet them all properly to give them a huge hug and show them how deeply I appreciate their unwavering support.

Friends and family aside there is one community that kept me going more than anyone else during my eight week stay in hospital. During that time they became my best friends, the people I confided in, the people I trusted, the people I laughed with and the people I cried with. I am of course referring to all the nurses and support staff that make up Granard House Ward 1 (GH1) at the Royal Marsden.

A remarkable group of people who dedicate their lives to helping others. They go above and beyond on a daily basis to make sure not only me but my family are comfortable, that we understand everything that is going on and answer all of our questions if we face uncertainty.

It’s strange because in those eight weeks you can’t help but open up about wider aspects of your life and they too share stories from theirs. It helps us all make sense of the nonsensical, when you hear other people have been through and experienced the same sorts of tragedies as you. We would often hug each other and cry about just how unpredictable life is.

But it’s not all doom and gloom on the ward. Far from it. The best part is the laughs and the trust and bonds we all form which slowly roll into banter towards each other; how ridiculous my hair was looking without a cut and a good wash, the weird pets one nurse insisted on keeping (at home I must stress) the inability of one overly confident nurse to cannulate me first time. We create laughter because well laughter is the best medicine isn’t it?!

I thought my positivity was all but lost during my stay on GH1 but it was the nurses that helped me find a reason to keep going. They should be treated as community’s most precious of gifts. Their work is relentless and it is vital. We need each and every one of them and I have nothing but love and admiration for all of them.

When the day of discharge finally arrived I was beyond relieved. Finally a night in my own bed. It was truly a great feeling to get back out into the world and start to rebuild my life. But if I am sad about one thing being discharged it is leaving the nurses. The close bond you form, if formed anywhere else, would make you friends for life because that is just how good the nurses are. But they have many more patients to carry through their dark times and I know it’s no longer my turn to need them.

Still when chemo comes round I’ll be sure to pop my head in and say hi, and I leave this extended stay knowing that if I am unfortunate enough to need surgery for more blockages, as scared as I will be about the procedure and what it means for my progress, I know the nurses will ensure I’m in great hands.

As for me now, well big gun chemo has started in big gun chemo fashion. It’s completely knocked me for six. The one drug I am particularly fearful of, because historically I had very severe reactions to, still triggers horrific reactions but we are finding improved ways (through the combination of adding other drugs) in which it can be administered to me without causing such traumatic issues.

For the time being I will be having chemotherapy as an inpatient once every two weeks as a precaution. This has been a good idea, particularly for the last round as I ended up staying in for a week having spiked a temperature and developing three litres of fluid on my lung that needed draining! Still, hopefully soon my body will adjust and I will learn to take big gun chemo in my stride.

Most importantly perhaps this shows my positivity is returning!