We faced the challenge early last year of a cancer diagnosis, less than one month into our marriage.
The scariest thing about it was how quickly it escalated.
Over a period of weeks, a growth of over 22cm in diameter appeared needing emergency surgery to remove it and related organs including an ovary.
It was like living on the set of a horror movie.
We can only describe the experience as a whole as otherworldly- like taking a step into “The Twilight Zone”.
Our first step amidst the shock and grief was to validate and give the cancer an identity.
We knew to get through it one way or the other we had to learn to live with it and so ‘own’ it in a way.
We never resented it being us affected because, e.g., we live an extremely healthy lifestyle.
In this regard, we relied heavily on toolkits contained in our previous posts entitled "Maintain a Positive Stressbusting™ Frequency by avoiding Jealousy" and "Learn to Expect (and Accept) the Unexpected to Stressbust™ More Effectively".
Instead, went into full on optimism mode to manage the overwhelm.
But hanging on to this optimism proved exhausting at times.
Because we felt like our feet were stuck in cement.
Any ability to life plan was as a necessity placed on hold – and avid planners as we are, this was crippling.
Every day tasks like popping to the newsagents or walking to the nursery felt like physical and emotional marathons – how could the world around us just continue turning as if this were not happening to us?!
Sleep was virtually impossible unless the exhaustion was overwhelming due to worry – because the massive stakes at play and related "what if's" monopolised our minds for months.
Added to that we had the small matter and physical strain of Her Majesty the Baby to contend with, who required our continued paramount focus at a point she could not yet walk with operations (and related recovery times) looming that would put one or both of us out of action, when neither of us could afford not to work.
We resolved therefore day one not to be in Denial, as this would not help in the least (see our previous post entitled “The Dangers of Denial to StressBusting™”).
This meant talking about the issue openly and when we needed to without limitation or exception – and my, did we talk.
We even started making a full set of post death plans in case of the worst, simply in hindsight to purport to be able to exercise some control over circumstances in relation to which we otherwise felt utterly helpless.
Ours is a rare form of ‘muconious’ cancer, for which chemotherapy is futile.
This made it even harder for us, as there is very limited data available to consult and even the medical team struggled to provide definitive answers to the questions we naturally had.
And whilst they tell you not to ‘Google’, of course it is human nature to do so.
So the medical reports and statistics we identified in a desperate attempt to make some sense of it all baffled and confused us further.
In our case, emergency removal of the affected organs was the sole option available.
We have been so very lucky to be in a solid family unit during this period – we cannot conceive how immensely challenging it would have been to go through it alone.
That said, we shamelessly admit that the whole experience put an extraordinary strain on our relationship that could have easily seen us off.
When, for example, does traumatic experience of any nature (in this case, cancer) and the physical as well as emotional impact of organ removals make 2 people fundamentally different to the ones that married in the first place?
And one of the major results of a serious diagnosis like this is that you subconsciously start to grieve ahead for the worst case scenario – this is a basic survival instinct of the human condition.
Unfortunately, this process by its very nature involves imaging life without the sufferer, not a great prospect for a new marriage in its infancy such as ours.
It has entailed imagining nothing less than death within a short period, and bringing up a very young baby as a one parent family.
What struck us was that, while physical support throughout was thorough to say the least, there appeared to be a disappointing lack of recognition of, and related support for, the mental impact of the process and the obvious grieving period that would follow diagnosis and major organ removal for both sufferer and partner.
We were very much just left on with this side of things, without being armed with even basic coping or management mechanisms.
Immediate family and friends have done their very best to offer support, but it is one of those situations where if you haven’t lived through it, it is difficult if not impossible to empathise to the point that you understand the whirlwind of feelings, devastating insecurities and fundamental questioning of self that it creates with resulting impact on human interaction.
They simply wanted everything to be ‘alright’ when it patently was not and sought assurances that couldn’t possibly be given from the sufferer (or indeed medics) that all would be good in the end.
Grateful, therefore, though we have been for their best efforts, they eventually became counter productive, in part because of the above lack of understanding, but also because they were going through a grief of their own at the diagnosis and we were starting to feel as if we were managing their own grief processes as well as our own.
We therefore retreated in the latter stages of the treatment cycle, when the uncertainty peaked, and instead of circulating, dug deep into our own trench until interim treatment was complete, bouncing scenarios off one another until we had not an atom of energy further with which to do so.
Whether or not this was right we do not know, but it worked for us by bringing us closer together and enabling us to focus on being gentle to ourselves and one another.
Our main piece of practical advice to anyone who has to go through what we are going through, however, would be to engage with an independent support network early on, such as your GP’s mental health service or MacMillan, which can offer excellent expertise, experience and encouragement if invited to do so.
We certainly found that talking to strangers with no vested emotional interest was more beneficial than anything.
Has the whole experience changed us?
Naturally, to some extent - it is a lonely business that has forced us to reassess our priorities as well as the context of our own mortality at very young ages.
For a period during and after our initial treatment, we became much more guarded for nervousness as to what was around the corner that we might not be able to control.
We questioned how and why we ever worried about mundane day to day matters and struggled to re-engage with ‘normality’ for a period (albeit we had somehow managed to maintain regular routines throughout as if the diagnosis and treatment had never occurred).
It hurts to even think back about it all now as we continue to try to heal and adjust to the new reality as best we can, and also prepare for the scenario we and our family could face moving forward.
We often reflect at the honeymoon period of our marriage that we missed, the diagnosis coming so soon after our wedding.
At first we felt ‘robbed’ of it but this feeling has gradually subsided with time as we reappreciate the reasons we wed in the first place regardless.
Often, we have bemoaned the fact that we could have better handled the trauma say 5 or 10 years down the line.
Thankfully, however, we placed life and long term illness insurance cover at an early age before becoming real time examples of the importance of these. For further detail of the importance of this, please refer to our post entitled "Have a "Plan B".".
We cannot impress enough how much pressure these took off us and would strongly recommend anyone of any age to consider such placements, which if effected at an early age can be extremely reasonably priced.
Don’t be fooled by the ‘It’ll never happen to me’ fallacy, because bad things can happen to nice people.
There is regrettably no predictability and if terminal illness does occur, many policies offer in addition to financial benefits wraparound emotional and practical support that could prove invaluable.
Cancer is indiscriminate in who it affects, and when.
And their is no handbook that explains how to deal with it – a bit like a first pregnancy, you work it out as you go along in your own way, but without a midwife at the end of the phone or the anticipation of a beautiful bouncing baby at the end of it.
But we intend to start creating immediate memories and to focus on short to medium as opposed to long term planning while we continue to try to heal, adjust and “Relax into the Dance of Life” (see our earlier post so entitled), whatever the future may bring.
And we always spare a thought for others going through the same or a similar experience, as we fully comprehend the utter devastation they will be enduring.
NB: If you are or have been affected by anything contained in this post, please feel free to reach out to us and/or see our Legal Notices section for further advice and recommendations.
Much, much love,
LouLoU&MikeyM🙂💛💚💙💢 xxxxx