(At the outset of this blog I want to make something crystal clear, this blog is not to be misinterpreted as a criticism of fellow patient advocates, we are all just trying to survive in the system that so often fails us)
Sometimes in life, you need to know when to talk up, sometimes you need to know when to shut up. Becoming a stage 4 patient advocate has been a rollercoaster lesson in knowing the difference. I don’t claim to have the authority on either scenario at present so I’m sure I will probably divide opinion on whether I’m right to talk up now.
We have all followed the Cervical screening check story unfold in the media over the course of this year. It has to be said it’s been horrendous, as a stage 4 melanoma patient I watched in tears on many occasions. Getting any advanced diagnosis of any cancer is, without doubt, the most challenging life-changing experience anyone can have the misfortune to encounter. “Devastating” is a word often used to describe it, but even that doesn’t do it justice.
With almost four years I have tried my best to advocate for Melanoma patients but also for improvements for all cancer patients, one of the biggest barriers we face is without doubt access to innovative treatments. I also acknowledge the huge advances being made in cancer outcomes, but making headline-grabbing scientific advances and actually getting them in a clinic to a patient are often separated by a treatment access track that makes the grand national jumps look like pre-school sports day assault course.
For those that don’t understand the process I will attempt to give a brief outline; To treat cancer you need to identify a target, it’s not simplistic to find these targets or weaknesses in the tumour armoury, this is one of the reasons that cancer remains so difficult to treat, but when researchers do find a “target” it starts a long process of trial and error to then find a compound that can attack that weakness and in turn kill off a tumour. This can take potentially years, firstly it has to be proven effective in repetitive lab testing, (often latched on to at this stage by the media and hyped up as major breakthrough never to be heard of again i.e effective only in mice).
Once sufficient evidence of efficacy is seen in the lab it moves on to phase 1 clinical trial, this stage will determine if it is safe to use in humans, if it is safe it will move to phase 2 trial which will look at how it reacts to cancer inside the human body this could turn out to be successful or as is often the case disappointing because killing cancer cells in a petri dish or a mouse is very different to achieving a response within a living breathing human. At this phase, there may also be an adjustment to the dosage required for an effect. Sometimes there have been stunning results at phase 2 trials and the drug gets fast-tracked on to Phase 3. These Phase 3 trials are run in multiple locations throughout USA, Europe and globally. Ireland generally opens phase 3 trials, although we do a lot of basic lab research like I mentioned happens before Phase 1 we don’t to my knowledge run phase 1 or 2 cancer trials.
So what happens once the big Phase 3 trial is underway, patients get recruited and get an opportunity to potentially try a treatment they wouldn’t otherwise get access to. It may turn out to be better than what’s already offered as the best standard of care, or it may turn out even at this late stage to be unsuccessful. That is the nature of research trials, now of course as these trials go on for a number of years, we can begin to get a clearer picture of the efficacy of the treatment. But what if you’re a patient who happens to get diagnosed after one of these trials has stopped recruiting in your country? what if it’s already clear that this new treatment is better than the only existing treatment available at the moment in your country? What if your life depends on having a chance to try this treatment and you try to enter the Cancer grand national race when the gates closed and everyone else is almost at the finish?
If the trial has finished recruiting, and the interim analysis is favourable then your treatment lifeline may already have gained approval from the USA FDA (Food and Drug Administration) This approval can mean the drug is now on track to global reimbursement but hold your horses, that doesn’t mean Mary or Sean attending hospital in Cork or Dublin can have it just yet. This is the Cancer Grand National and we are only on the first lap, tragically we have already lost some beloved companions because the track is too long and the participants are at a disadvantage from the beginning.
What are these disadvantages you might ask, well there was the possibility to take part in the trial, but you missed the recruitment cut off potentially because it took so long for you to get referred for that MRI scan or CT your GP thought you needed months and months ago, if you go back even further you might have decided not to attend the doctors at all for that checkup because the thought of entering the HSE hospital system with all the bad news stories frighten you more than that pain your feeling inside or that little black mole that’s started to bleed. As a result of disadvantage, you will potentially end up in A & E with a much worse prognosis than if the system really supported you. Alternatively, maybe you did go early and now you find out the all clear you got was actually a mistake by an overworked under experienced locum. Maybe you did everything we are told to do but it just wasn’t reciprocated by the system. Now at least you are in the system and at the start of the Cancer race.
What then? well, the trials out and the existing treatment is at best palliative you feel like your being dragged along the ground by your horse through all the jumps each one harder than the one before. You are being torn asunder mentally and physically. Desperately trying to cling on to that hope of pulling yourself back up into the saddle so you at least have a shot of surviving the next hurdle the next short time frame you can allow yourself to think of. The good news appears on the horizon the EMA (European Medicines Agency) has now decided to approve the treatment you want. Whoop Whoop I hear you shout it got a licence to be sold in Europe at last. It’s tantalisingly within your grasp, you can see your fellow patients from around Europe getting the treatment already, within a couple of months of the licence approval. Some are fortunate and make it back up into the saddle, some not so lucky finish here because the treatment does not work for everyone. But you just want that chance like the patients from the Netherlands, Belgium, Sweden, UK after all we are all European, we are all the same, we all want to survive. Don’t we all deserve a chance in this race? Arent the patient needs supposed to be at the core of our health system?
We can see there is a process to be followed it’s been put in place to protect patients from unproven treatments that would do them harm. We have seen in the past when there was little or no regulation the damage that can happen by not following a process when it comes to the safety and regulation of medicinal treatments. If you can’t get on the Phase 3 trial maybe you can get the drug on compassionate grounds from the pharmaceutical company. It’s just that doesn’t always happen, morally you would think they should be obliged to provide it and often they do, but this is a business like it or not, and business has to answer to its investors and pay its staff. If you give your product away for free indefinitely why would anyone invest in it so you could develop new products it’s a catch 22.
Ok so now we are really stuck; no trial, no compassionate use program, our friends in Europe are getting treated and we are left here in what can only be described as a catatonic state of despair with the only option of a treatment being offered having little chance of improving our chance of survival. Ask yourself what would you do? Sell your house, move abroad, crowdfund, chance your life on a quack treatment, that will potentially do you even more harm.
In Ireland patient advocates are encouraged to get involved, they want to hear our voices, where can the system be improved, how do we work together contribute? One of the ways in recent years is giving our voice to the treatment reimbursement process, letting the NCPE/HSE know why we the patients think a new drug should be reimbursed. How will it compare in terms of quality of life? sometimes its very easy to answer that one if you didn’t have it quite simply you would be dead that’s a direct improvement on quality of life right there!!
Until today I felt we had made some progress in terms of patient engagement, there was a purpose to it until the government decided again to overturn the process we have been asked to engage in. This process of trials to gather evidence, safety assessment for licensing by the EMA, patients engaging in the established HTA reimbursement process was thrown out the window with the approval of Pembro without an EMA licence for patients with advanced Cervical cancer. Let’s be straight here before I get lynched I have no begrudgery towards these ladies receiving treatment. I wish them the very best of luck in their treatment.
BUT and it’s a big one, where is the fairness and transparency for all the other patients waiting sometimes up to two years in this country after the issue of an EMA licence for the reimbursement of treatment? Do we now all assemble on the streets outside Dail Eireann and demand that the NCPE (National Centre for Pharmacoeconomics) be disbanded in light of this approval, after all what need is there for such an assessment process if a TD, Advocates and media backers can get the NCPE/HSE and the Minister to overturn an entire process that all the rest of us are just expected to sit quietly and adhere to as if this isn’t relevant to our lives our survival too?
How would you feel if you were waiting for the approval of a potentially life-saving treatment, told it was too expensive, told to wait, but you don’t have time to wait, there’s a high possibility you will die, suddenly though money can be found to pay for a drug that doesn’t even have a market licence for cancer the HSE agreed to fund it for? Would you think there’s fairness and transparency in our reimbursement system? Would you instead believe that Ireland continues to be not about having a fair and equal society for all its citizens, but just for the ones the government favours or the media has taken to heart? For some, it seems the race is over before we ever even get an opportunity to participate.
For more information on this subject pls read this link to a recent report from the Oireachtas health committee:
Kay Curtin is a stage 4 patient advocate for Melanoma Support Ireland, she is PPI committee member at IACR (Irish Association Cancer Research) she is patient consultant to the Cancer Trials Ireland Melanoma Trials Group, She is a member of MPNE (Melanoma Patient Network Europe) She has been a patient adviser to the EMA scientific advisory group. She has completed the Irish Patient Education training program with IPPOSI, and made two submissions to the NCPE for the reimbursement of new Melanoma treatments. She has attended ASCO and presented at ESMO. She participates in numerous committees and remains committed to the advancement an support of scientific research to better outcomes of for cancer patients. At present, she is studying Youth and Community work at UCC because she hasn’t lost hope in a fairer, equal society for all Irish residents.
I guess you could say “Moving On” that’s a bit of an oxymoron when it comes to a stage 4 cancer diagnosis. Sometimes I wonder is it something expected of me, or something I expect of myself.
For those looking on as time passes and I haven’t passed, it can seem like all is well in the world. They see me walking in the neighbourhood, or at the local pool for my swim. I socialise and I travel, people comment ” you always seem busy” if you look at my Facebook page, it certainly looks that way. But what’s it really like to live in my world?
Truth is I spend a lot of time on my own, I spend far too much time on social media!! But I can’t blame anyone except myself for that one. Having stage 4 cancer can be bloody boring in between hospital appointments if you’re not feeling up to much what’s there to do. It’s also not healthy mentally to live from appointment to appointment.
In the winter time, it can be especially hard long dreary wet days when it’s not even possible to get out for that walk. Cancer often lives inside your head not as some mass visible on a scan but as a feeling, a barrier to what we know as “normal life”. Maybe there are things I am still capable of doing even with the side effects of treatment and time I require for hospital appointments.
With the last few years I have thrown myself into advocacy, I love it there is a sense of purpose, doing something worthwhile, keeping busy but it was still all about my nemesis. Earlier this year I thought about what it would be like to try something different, but what could I do, I worried about what would happen if I tried. Sometimes I now find it difficult to remember what was before Stage 4 it’s been so long, what was it like to go to work to look forward; weird reminders jolt me on a daily basis at the beginning I didn’t want to buy any new clothes, now I realise as I load the washing machine everything I own is a post-diagnosis purchase, conversations with strangers asking what I do for a living, how do I answer. I never imagined at the beginning it would be this long. There’s no roadmap for longterm survival at stage 4.
I had a long internal battle about what I could do, I had a professional consultation and it was suggested I should get a job somewhere part-time where no one knew about me or my diagnosis. It would give me headspace or at least that was the assumption. I couldn’t visualise myself having that conversation with a prospective employer ” Oh just to let you know, I have stage 4 cancer”. I would I thought in fairness have to let them know if only from a health and safety perspective. I couldn’t imagine anyone wanting to employ someone in my situation and to be fair a quick google would have revealed my secret.
When I have that moment with someone I haven’t met before it’s difficult to verbalise the words even in my own head, it still sounds totally abnormal that I’m going to be saying it. There’s normally one of two reactions; the person opposite bursts into tears or the conversation suddenly becomes very uncomfortable for them or me. Recently I got stuck in a European airport because of a flight cancellation, there was a huge scrum so I couldn’t get close to the desk and explain my situation. I could have pushed forward shouted out “I have Cancer let me through” but I couldn’t verbalise why I thought I should get priority for rebooking, I froze sat down and waited till the big scrum was over, it meant a long reroute when I eventually got rebooked. Why when I can write so freely about having cancer couldn’t I say the word out loud. Why did I have a problem with how strangers viewed me or was it more to do with how I view myself now. Was it OK to pick when I wanted to be a patient and when I didn’t being a “well” stage 4 patient brings its own challenges?
I came up with a plan B, as an alternative to the job suggestion which I didn’t feel was that practical, making a decision to apply for an adult continuing education ACE course at UCC. I had debated going back to do a full-time honour degree, but the commitment time-wise was too much. I thought about how I would feel if I invested all that time and I got sick and couldn’t finish. I don’t think I have ever seen anyone respond to those what would you do if you only had a year to live questionnaires by saying sit in a classroom Monday to Friday. Although I have met someone recently in a similar position to me doing exactly that because it was always their dream to go to college, I have so much admiration for their determination.
I also thought about whether it was a waste of money, after all, I realistically won’t get to have a career in my chosen field like my classmates, if and when I get to graduate. All these questions swirl around in my head when I let them have space. Also swirling around in there is that realisation of how incredibly lucky I am to even have these opportunities after almost four years of stage 4. So many wonderful people I have gotten to know in that time have passed away from this disease. If I let those thoughts dominate I wouldn’t get out of bed in the morning. So I dumped those thoughts and joined the class. I was going to get a different benefit from participating it would be a distraction from my other reality.
People like to remind me “sure nobody knows what will happen”, there is some truth to that, but I have a different degree of certainty of WHAT will happen but the anxiety lies in when, so, that makes it hard to move on with your life. But living every day like it’s your last isn’t very practical and it’s certainly not the normality I crave after this length of time I’ve tried it and its tiring and the people you care about will find it hard to join in on the great adventure, so it’s not much fun on your own. Children have to be looked after, bills have to be paid, meals prepared, clothes washed, everyday stuff might be mundane but its also necessary, normal.
At ESMO in October “Life After Cancer” session I trudged in feeling there wasn’t anything I’d be interested in, after all, I could never visualise myself having a life after cancer. It was a very factually interesting presentation by Dr Dumas on the “Right To Be Forgotten” but Isabelle Lebrocquy whose personal perspective was really powerful highlighted the problems faced by survivors of childhood cancer. These young people who had endured the traumatic experience of cancer at such a young vulnerable age were also finding it difficult “moving on” because now they still faced the aftermath of a cancer diagnosis and it was still dictating what they could do with their lives. They were finding huge barriers to get mortgages, life insurance, adoption (remember the fertility issues relating to treatment).
I wondered what will happen to patients that are diagnosed in the future with Melanoma. Potentially cured by improved treatments, it’s our greatest hope that might be more rule, rather than the exception. Will there be a time when the “Right To Be Forgotten” becomes relevant to them. Will, they be allowed to move on treated with equity or always be labelled “Survivors”
There are so many fears and barriers associated with a cancer diagnosis, but living in a perpetual limbo where it feels the world moves on around you, without you, even though you are still very much here is particularly difficult, so I could really empathise with those young patients plight. I left the session feeling annoyed at the problems they face but with a deep admiration for the movement that is taking place driven by these young people, please have a look at their website to see what they are up to https://www.youthcancereurope.org
Maybe I will never truly escape the feeling of spinning on a roulette wheel wondering if the next time it stops I will be out of the game permanently, so while I still have some lady luck left, I will continue to try and live it in the humdrum of a normal life, like everyone else, not the boredom and fear of waiting for the inevitable final spin of the wheel
My mother died at the age of 56 just eight years more than I am now. She had MS every day we spent together, her life as I remember it was a pitiful existence. There was little joy permeating the constant struggle, for any of us. She got little in terms of support nor did we. My father died at a few weeks short of 91, he had excellent health up to the last year and half of his life. I don’t want you to think, I wished the roles were reversed, I just wished something could have been done to make it fairer, but since when did life ever proclaim itself to be fair.
I used to pray for a miracle and when things got really bad I used to pray that she would die. Afterwards, I would be eaten up with guilt, remorse and anxiety that it might actually happen knowing it would then be no one’s fault but mine. Later feeling that anything bad that happened me was as a direct result of those evil thoughts I’d had.
What I didn’t realise back then was that “medicine and miracles”, have no correlation.
My thoughts and feelings were those of a child that didn’t receive any information or support. As I’ve gone through my life the realisation that those two things, could have a profound effect on my ability to cope with anything, that got thrown at me became very apparent.
With information, I have the ability to make sense of what is happening inside me, make decisions, with the support I can negotiate the feelings that come with the diagnosis. Why is this important? Because cancer remains one of the most frightening words a physician can say to you.
With these two important structures in place, I have the ability to make decisions. BUT, how do I know the information is reliable; because I have decided to put my “faith” in medicine, not miracles, and I also put my faith in my Oncologists of which I have had two.
If you look for the definition of Oncologist online it’s quite short; a medical practitioner qualified to diagnose and treat tumours. When I read that it doesn’t do justice to the experience I have encountered.
When I was first diagnosed I used to turn up at my appointments in London with my baby in tow, the room was small he was small, he would cry, I would cry even more. My Oncologist showed me amazing patience, understanding, compassion. He was busy, the clinic was always full but I never felt rushed, he gave me information in a way that I could deal with it. If I asked for more I got more, but it was a gentle process, he was supporting me in the way he was trained to. When things got too much he organised counselling for me. Was everything perfect no of course not this is real life, we had differences, sometimes I wanted extra tests he felt were unnecessary, I had limited understanding of my condition or treatment protocols, I didn’t feel it was my place to worry about a lot of the background stuff. I just wanted to feel I was being cared for in a way that would mean I’d be returned to perfect health and I could get on with my life. I wanted and needed reassurance and support alongside the physical treatments.
When the time came he helped facilitate a smooth transition of care to Ireland. We kept in touch more infrequently as the years went by. We both hoped I’m sure that we would never meet again. We both hoped I was one of the lucky ones. When I saw him for the first time in ten years, in the middle of an incredibly busy conference in Chicago. He knew me instantly, remembered my name and on hearing, I was now dealing with a terminal diagnosis, became visibly upset so we did what two people do in that situation, we hugged tightly, oblivious to those around us. He was supporting me again, and I appreciated it.
When I had my recurrence the surgeon, who had the unfortunate task of breaking the news to me could do no more for me. I was on a day-ward that had to be opened because of bed shortages, the curtains had been drawn around me since the afternoon before when I’d received the news, the nurses apologised they really wanted to move me to somewhere more private to absorb the diagnosis. I was assigned a new Oncologist, to be honest, I was so ill, I didn’t care a jot who it was. When he arrived he didn’t stand at the end of my bed, he came alongside me bent down to my level and held my hand. He told me what I already suspected I was incredibly ill, he didn’t tell me I was dying but I knew then that it would be a matter of time; I didn’t need to hear all the details, I needed a plan and support. He gave me both that day, I cried for the first time but it wasn’t from fear, at that moment it was from relief, I had been so ill with weeks and now here was someone who was going to care for me. I left the hospital feeling incredibly calm given the circumstances.
As time has passed by the relationship has shifted dynamic, I got better because of decisions he made when I was too ill to make them for myself. I took his advice, on my diet because I was painfully thin, I took his advice on rest, on exercise, on pain relief. As the weeks stretched out into months, I became more curious, I asked more questions, he encouraged it, he supported it. When I told him I was attending international conferences, we discussed the things I was hearing, I questioned my treatment options, I understood by now much more about my diagnosis.
Sometimes we disagree on things, he is never patronising or misogynistic in his responses. What he is, is incredibly busy, he works long hours of that I am sure, makes personal sacrifices, spends time behind the scenes negotiating the complexity of getting scans, reports, beds. In spite of cutbacks and a system that makes things difficult for patients and doctors, I sit in the waiting room and watch the way he greets his patients, its warm, friendly supportive. We are all treated with equal respect. Sure he probably gets well paid, do I care no because I understand the value he brings, to my life, my family.
Someone once said to me you don’t need to like your Doctor they just have to be good at their job………… I’m not so sure I agree, they do need to be good at their job, but one does not over-rule the other, it always helps when they are respectful, show empathy, but that also goes both ways. The dynamics of Oncologist and patient relationships are different should be different this is an incredibly vulnerable position you’re in together. Will it be perfect, could things be done better, of course, there is always room for improvement, but that never comes without good two-way communication.
Do we expect them to be everything, sure we do because when we are ill we want someone to guarantee us everything is going to be OK, when the miracle isn’t produced, it’s easy to blame the medic……… not the medicine, lack of research or the system, the same system that frustrates our medical profession on a daily basis. Have we really arrived at a point in time where we don’t believe doctors have our best interest at heart? Sometimes it appears that way depending on what direction you look.
Do we give our trust over, to the great pretenders, the quack, the charlatan, the celebrity, the fad diet peddlers, the faith healers, do we believe they have nothing to gain, do we believe they will understand our vulnerability, do we abandon all sense and reason and go blindly in search of the miracles they promise, that ethically our doctor couldn’t…………… because they understand as we certainly should, that miracles and medicine don’t correlate and science is where we should place our faith, as we continue, negotiating the complexity of humans.
Sometimes it just isn’t fair, people go long before we expected before we were ready to let go, that is the most difficult part to accept about this rollercoaster we find ourselves on called life. Sometimes miracles are just good people with kind hearts………
I walked into an already packed church, the crowd snaking down the footpath far outside. I took a seat in the pew, the priest was anxious to get started. The crowd was so large they could never all have time to sympathise, before the official start time.
I was happy to wait, from where I sat I could not see the coffin draped in white that would transport her to her final resting place. I didn’t want to see it. Through the mourners though, came her beautiful, beaming smile, from her photograph place atop.
She would not have liked all the fuss about her, she would rather the attention was on someone else, I know this because she was loving and giving, a little self-deprecating. I wished she could have seen, just how important everyone felt she was. Important enough to take time out, of busy lives in the middle of the day, in the middle of the week to come say goodbye, to say “thank you”. She left an imprint on all of us, however we had come into contact in our lives.
For me, she was a dear friend, unfortunately not a lifelong friend, but long enough to be significant in my everyday life. We found each other, when we both needed someone. Someone who understood…….and now she is gone.
My friend could talk for all of Ireland, she could sort problems with a cup of tea and a chat, I laughed, in between the tears, when that was mentioned at her service. We would often talk for an hour or more on the phone, forgetting what it was we were supposed to be doing, instead. When we met, she would barely draw breath between sentences. When we parted, we would always envelop each other with a tight hug, because we never knew when things might change, when it might be the last one. Things were always on the cusp of change, we both knew, but we both dreamed for it to be different……..and now she is gone.
We tried to find humour in the most horrific of scenarios, she tried to hide her anxiety, to protect me, I did the same, for her. Sometimes it worked, sometimes it didn’t, and then we were honest with each other, like we weren’t or couldn’t be with anyone else. We needed that, we needed each other…….and now she is gone.
The great and the good of her area came to pay respect, a thousand people maybe more. She is much-loved, much respected…….. missed.
I will miss her messages, often late at night, when we both should have been sleeping, or at least trying, but some fretful feeling had descended that we couldn’t shake off. I will miss her quirky wisdom, I will miss the sound of her voice, from her whatsapp messages. I will miss the way she always asked about my children, remembering exactly what I had told her about them, in the past. I will miss the way she always had a plan, a way of looking forward, however bad it got, even at it’s very worst…… it couldn’t take that from her. She held on tight to herself, her dreams, her personality…….and now she is gone.
She didn’t wage a war, or lose a battle, we both understood you can’t, thats a fantasy created by others……to give them a way of understanding the unfathomable……the reality of our lives not theirs.
I already miss seeing her at clinic, knowing I won’t see her smile, greeting me again, her knowing, her understanding like no other person in the room, we were in the same boat……..and now she is gone.
She was forty-six, she had Melanoma cancer, she was my friend, and now she is gone.
The Heart is a precious gift. It is the core of our being if only in a symbolic way. It can be bruised, battered, elated, bursting with love and pride. It can be ripped to shreds in an instant, by a live changing event.
If you google, can the heart repair itself? you will get conflicting answers, the truth is even if it tries to repair itself, scar tissue always remains. You, can try, but you can’t remove the reminders of what caused the damage, in the first instance. They stay there as a lesson for the future. Sometimes if they are left to grow unchecked, they can eat away at what remains of the tissue.
Be it your childhood, your first lost love, losing a parent, sibling or child, a marriage breakdown, an addiction, the traumatic events and disappointment scar your heart for eternity and change the person you thought you would become, they take many different shapes and guises, but each event leaves its mark, changes your direction on the compass you felt so sure of.
They take you down roads you would never wish to travel, but only you can decide to travel in the same direction or change course. Each person enters the world alone, and leaves alone, but the imprint we leave behind can have a profound effect, on those we came into contact with along the way. Sometimes the battle between what’s right in our heart and what’s right in our head is a hard-fought one.
It can be a constant struggle, of misunderstanding yourself and misunderstanding those you share your life with. It requires constant attention, it’s like a kindergarten child demanding you make decisions, offer opinions, give wit and wisdom, always have the right words to offer at the right moment, knowing your always being judged, or assessed in some way. An important part of our life skills is knowing when to deal with that child and when to ignore its pleas for attention. Which situations to walk away from which to confront. We don’t always get it right. We don’t always come out without scars.
It takes bravery to admit you have a damaged heart, it takes an understanding to make you begin a healing process. It takes guts to begin again and risk more damage.
Show me a person that has not made mistakes in life, that self-inflicted some damage to their own heart, knowingly or unknowingly hurt someone they cared about, that person does not exist. Some damage can be papered over, but life has a funny way of pulling off the cover when least expected. We can pretend we are things we are not, suppress feelings in a bid to ignore the discomfort they bring, with them. They always come to the surface, like oil and water the heart and denial doesn’t mix.
But always, even if you disagree with it, the beat of your heart in your chest will let you know how you genuinely feel. Only you can decide how to translate that feeling into words and actions, sometimes you will get it very wrong, sometimes you will get it just right, as long as you keep your heart free of bitterness and malice, forgive yourself and others your heart will continue to be a precious gift……
I haven’t done much blogging lately, I lost my mojo somewhere a few months back. I’m not really sure why, even though I was as busy as ever, I didn’t think I had anything new to write about. I was pretty fed up with melanoma. I think it was about then I decided I needed to challenge myself with something new.
I guess that’s not completely true though, because looking back at my messages it was actually September 16, when the idea of doing a skydive was first muted. I didn’t really take the offer seriously at the time and quickly forgot about it. Every so often the conversation would start again. “Are you going to come do that skydive?” for someone who could have had a limited life expectancy, I took my time. It wasn’t fear that was holding me back, it just wasn’t something that had ever really been on my radar to begin with. I didn’t have a “bucket list”, I thought they were a bit naff if I’m honest.
I was busy living, not making a list of things I wanted to do before I die, because I wasn’t really considering doing that anytime soon, if I could help it.
In March I attended the annual MPNE conference in Brussels. It was a great weekend, the conference went exceptionally well and Ireland had beaten England on St. Patricks day at the rugby. But, I knew that all too familiar gut wrenching feeling as we drove back to the airport. I knew I had just said goodbye to friends, I would never see again, because of this disease. I was feeling bruised as a peach, vulnerable, and confused. I went to talk to someone professional, but I didn’t need extra evaluation, I was coping well under the circumstances was their assessment. All they could do was advise me to seek out extra professional support, if I felt I needed it. I on the other hand decided I needed a distraction. Something to look forward to and plan.
I haven’t done a lot of forward planning in recent years, because stage 4 melanoma is too unpredictable. A couple of months at most in between scans, you feel is about as far as you can look ahead. So committing to something, that was months away, was the scary part. But, I bit the bullet and contacted a local cancer research charity, if, I was gonna jump, out of a plane, it should at least be for a good reason, right!!
I hadn’t actually discussed what I’d planned with anyone until I announced it on Facebook and Twitter, with my funding page. Then things seemed to snowball quickly, within a few days there was already over a thousand euros donated. I hadn’t even discussed the logistics of the jump, but I knew if it was going to happen it would be with Luc Vautmans, and Hoevenen skydiving near Antwerp, of which he is president. He was as surprised as everyone else, I’m guessing, to find out I was actually going to do it, after almost two years, of offers to accommodate it.
In fact I’d go so far as to say, he never really believed I would, he now knows better not to challenge me, I don’t back down easily. I couldn’t think who better to jump with, than a fellow patient who understands what it’s like to live in the stage 4 bubble of long-term responders. Unfortunately we are still a pretty exclusive club, that is why I wanted the donations to be ring-fenced for Melanoma research. I knew I would be safe, and I hoped he would understand, what a big deal it was for me to commit to jump.
We held a fabulous fundraising night in my local pub, last June, to correspond with my birthday, lots of amazing prizes donated by locals who wanted to help me raise as much as possible. We had a tremendous response, and in a crammed pub, in a little Irish village managed to raise another seventeen hundred euros from the raffle. I’m always proud of how my village respond when a cause needs funds, Irish people are known for their generosity and never fail to dig deep when asked. We also had a lot of craic, and dancing late into the night. To date the amount raised is over four thousand, six hundred euros. Boosted by the donation of a free jump from Skydive Hoevenen, which was a great surprise and really appreciated.
Logistics were never going to be easy, but we made a plan, some dates were proposed by Luc, the dive team, me and my friend Kacie, who I would stay over with after the jump. It was of course all-weather dependant, so I booked a cheap flight and a cheaper hotel in Antwerp, just in case it all went pear shape at last-minute. It almost did, after a summer of unbelievable weather, the week we picked it decided to break. I had to take a chance and just go for it. But on the day before I was due to leave I felt the tell-tale signs of an infection, something I knew was medication related. NOT bloody now, I thought as I started to burn up, my nasal passages and throat hurt like hell, I wasn’t sure what to do, I just wanted to lie in bed and sweat for a few days like I usually would in that situation.
I packed my bag and still wasn’t sure if I would be well enough to leave the next morning. I also took my electronic thermometer and promised myself if it went above a certain point I wouldn’t get on the plane. Just before we were about to board I felt the familiar feeling of a nose clot, I hurried to the bathroom and out it came followed by what felt life copious amounts of fresh red blood. I tried not to panic the boarding had just started, but I had ten mins to get it under control, I figured if I at least got underway they wouldn’t divert a plane if it started again.
I was going to Belgium and I was going to jump out of the next plane, I got on, no matter what!!
Luc collected me from the airport, I was feeling slightly better and my temperature was going the right direction, we had some dinner once we finally made it out of the Brussels car park that is the road to Antwerp, plans were made for the weekend ahead and a plan B depending on the weather. The heavens opened as we ran from the outdoor seating of the pub. It wasn’t looking good for friday as the rain continued throughout the night, and the wind picked up too. On friday morning I got a message to say the jump wouldn’t be happening, I was disappointed, but we had factored this in with Saturday and Sunday slots also a potential. I had a long lie in to help me recover from the infection, then I went exploring Antwerp on foot, but didn’t get too far. My motivation was low, because of feeling unwell, so I made it to the Rubens Inn, instead of the Rubens museum.
Once Luc finished work he came and collected me, we had decided as the traffic is so bad the best way to see a bit of the surrounding countryside was by bike, (not the kind with pedals). Again the weather wasn’t on our side, after a short ride out to the port of Antwerp the dark storm clouds gathered again, and we had to revert to four wheels.
After a stormy Friday evening out, it was still raining when I got back to the hotel. When the sun broke through on Saturday morning, I looked anxiously out my hotel window at the trees, to see how windy it was, thankfully the leaves were just lightly rustling, I went and ate breakfast, and waited for Luc to collect me.
I felt a little like a child on christmas morning, giddy with excitement but not nervous. I knew this was going to be one of the very best days of my life.
From the moment I arrived at the Skydive Hoevenen field, I felt completely at ease. I had a quick run through with my tandem-master Phil in the flight simulator. I was trying to listen carefully but was still a bit too giddy for it to sink in. He fitted me with my harness and then, Luc produced, what can only be described as the most unflattering piece of clothing that has ever been worn on my body, the tandem flight suit, even more hideous than anything we wore to a 80s school disco and that’s pretty hard to beat.
Phil disappeared off on the first drop so I waited with Luc, surprisingly he actually ate what I I managed to sneak him out of my hotel buffet, much better than a diet of Red Bull for breakfast even if it does supposedly give you wings!!. We took some pre jump pictures and then I heard the sound of an engine. The plane comes in so low, just over your head, it appeared from behind the office portacabin and Luc exclaimed “the best sound in the world”. I had to agree it was pretty awesome to be so close. Phil had landed safely from his first drop and was quickly getting ready to meet us at the plane, these guys don’t hang about, the plane lands and takes off again in minutes. Oh well too late, now wasn’t a good time to mention I could do with nipping to the toilet.
I joined Phil at the plane door, he got in, and I slid or rather plonked myself between his legs, all the time thinking I wished I’d tried harder at that diet!! I know what your thinking but we had rehearsed all this in the flight stimulator, sorry meant simulator. Phew!! it was small in there me sitting on Phil’s, well I’ll leave that to your imagination, the pilot whose face I didn’t even see, as I was sitting with my back to Phil’s chest, Phew again!! Luc beside me to the left on camera, Marc crouched in front of him with Christophe filming crouched at my feet, and I have no Idea how Bart fitted in because he is so tall. Sardines in a can would have more wiggle room. The engine revved the plane headed down the field and we were up!!
I absolutely loved the plane, the guys, were great fun, and pointed things out that we could see or at least I think that’s what they intended, it was a bit hard to hear. At 5000 ft the door flap opened, Marc gave me a fist pump and then he disappeared, It was the most hilarious thing I have ever seen, it was like a giant Hoover just sucked him out into the sky, the speed at which he dropped was phenomenal, now I couldn’t wait for my turn. We had slightly more room we were sans one passenger, but not much.
The guys closed the door flap and we continued to climb for another five mins to 12,000 ft, I guess if you were going to panic now would have been the time.
I was on the other hand completely relaxed, I so wanted to do this, and I felt entirely safe strapped to Phil, Phew again!! If I was gonna go, him landing on top of me wasn’t entirely the worst option for departure from this planet. (Ladies look a the pictures you’ll see what I mean). At our maximum altitude the guys opened the door flap and climbed outside to stand on the wing and cling to side of plane, I shit you not, this was the coolest thing ever seen by my eyes, just imagine doing that every week these guys are so damn lucky. With them out-of-the-way Phil pushed my carcass forward to the door. Now this bit, I wish had lasted longer, went in slow motion.
I looked down at the earth below and then at the guys hanging onto the side of plane, Phil gently pulled my head back into his shoulder and in unison thankfully, we began to fly.
The sensation of the air rushing past was all I could feel, I didn’t feel afraid, I didn’t feel like I was falling, it’s all a bit surreal, that’s why I wish I could rewind and do it again in slow motion. Christophe appeared out of nowhere in front of me, and Bart flew in from the side and touched my arm. I tried to look around for Luc, as I really wanted to see him, but he had explained it would be hard for me to locate him as he was jumping after us and filming from above.
We were in freefall for 43 seconds and reached a top speed of 220 km, it felt like nothing I can adequately find words, to describe, it felt bloody amazing!!
Suddenly as they appeared, the guys disappeared again, and Phil released our main chute. there isn’t a dramatic pull upwards it just appears that way on the camera. It all went very quiet because the free fall had stopped, and Phil told me I could remove my goggles. I looked up and said OMG there’s a canopy above us, anyone else would have probably been just delighted it had opened, but I genuinely hadn’t felt it go up, and was laughing again at the ridiculousness of the whole situation.
Phil loosened our harness, trust at this point is important, I didn’t panic and think he was trying to offload me!! We glided around for a while, I could see the motorway beneath us, Antwerp harbour, the nuclear power plant, none of them seemed like good options to land on. Phil pointed out the border of Belgium and the Netherlands. He asked me would I like to do a spiral, and help to steer the chute. I whooped, as we spun around so we ended up doing three, I have a strong stomach from years on waltzers at Tramore, good training for skydiving spirals.
I looked down and said, “is that LUC on the ground already?” how did that even seem possible, last time I saw him he was smiling at me in the plane and giving me a high five now he was looking up at me.
I raised my knees, then just as we were about to land stuck them out as straight as they could go, as instructed. We glided in and landed softly, me lying backwards on Phil, then Luc came and jumped on us and ended my fantasy. All I could think was “Don’t say it’s over, It’s only just begun……..
P.S Seriously though enormous high fives to all the team at Skydive Hoevenen, Phil, Christophe, Bart, Brit, Stefan, Marc, the pilot who remains nameless, all the people I sat and chilled with after the jump, while I waited for Luc to do two more!! the staff at pub next door for supplying post jump Moules Frites accompanied by a cold glass of Stella, but most of all to LUC for making it all happen…….I have a feeling it won’t be my last
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place”
Yesterday I travelled to Dublin to see a guest speaker at the Royal College of Surgeons Ireland. Of course all guest speakers are prestigious, but I wanted in particular to see this gentleman speak Dr. Siddhartha Mukherjee is an oncologist, geneticist and the Pulitzer prize-winning author of The Emperor of All Maladies: A Biography of Cancer. https://en.wikipedia.org/wiki/The_Emperor_of_All_Maladies
I’m going to disclose at this point that I haven’t actually read the book. It’s on my to read list, but I have been aware of its existence and the fact that Dr. Mukherjee was the opening keynote speaker at ASCO 17. So I was curious enough to register for his talk, and I’m glad I did. The fact, the lecture theatre was jammed, even though outside, it was a fabulous summer evening, shows the interest there was in what he has to say.
What I liked in particular about Dr. Mukherjee’s talk was the obvious empathy he has for his patients, and his passion for research. The presentation started with a discussion about a quote by Susan Sontang, which I have posted at the top of this blog. It explores the idea that you move from health to illness, and back again if your lucky to survive, always two passports, but only using one at a time. As we move though into an era of genomic diagnostics, are we prepared for the effects of becoming someone who holds on to their illness passport for all of their life.
A “Previvor” is a phrase coined for someone who has found they have a genetic predisposition for an illness they may never become ill from.
Do we want almost everyone living in “Cancerland” even if they are healthy. The following review which was published after the publication of Dr. Mukherjee’s book gives some food for thought, which the Doctor admits he did not fully understand the first time he saw it, it was written by Stephen Shapin of the New Yorker :
A world in which cancer is normalized as a manageable chronic condition would be a wonderful thing, but a risk-factor world in which we all think of ourselves as precancerous would not.
It might decrease the incidence of some forms of malignancy while hugely increasing the numbers of healthy people under medical treatment. It would be a strange victory in which the price to be paid for checking the spread of cancer through the body is its uncontrolled spread through the culture.
There are many ethical questions that need looking at, but as a stage 4 melanoma patient, and I know, its easy to say these things with hindsight, I’d rather be a “Previvor” than living with the uncertainty of a certain terminal diagnosis. Of course I might think differently if I was someone with a genetic condition such as Lynch syndrome, or if I carried the Braca gene. Waiting for disaster to strike, knowing its inevitable, is a special type of torture in itself, whichever side of the fence you’re sitting on. There is a concern however that we will begin to treat people as patients in the future, who may never have become a patient.
Dr. Mukherjee brought us through a journey of cancer from its first mention on a papyrus scroll in ancient Egypt, to the wonders of modern medicine, like Barbara Bradfield the first ever patient to receive Herceptin for stage 4 breast cancer, who is still alive after twenty years, proof that precision medicine could save lives, by targeting common mutations in the cancer gene.
The discussion was interrupted with a video clip, that, introduced the very human face of cancer, not just the tumour. Dr. Lori Wilson is a prominent cancer surgeon, who was diagnosed with breast cancer. The clip shows the moment not long after she begins Chemo, when her family gather to support her as she has her head shaved, effectively becoming that other passport holder. Losing her hair is a visible reminder that she has now crossed over, to being a patient. Dr. Mukherjee said when the clip ended that he makes all his oncology students watch that clip. It’s a stark reminder that there is no them and us in the world of medicine , anyone can find themselves in Lori’s shoes, cancer is not choosy, To See the clip click here
Some people mistake pessimism with realism, me, I like to think I’m optimistically realistic, I certainly felt that way after hearing Dr. Mukherjee speak yesterday evening, It’s certainly true it’s a much better time, to be stage 4 melanoma patient now than 14 years ago when I was first diagnosed. Then I would have lived possibly nine months if I was a later stage patient. Now with a greater understanding of cancer mutations, and targeted precision medicine I have already survived three years, I hope to get many more I’m optimistically realistic about it though, because I know how quickly this disease can turn on a patient again, I have seen it happen to many friends I have made over the last three years.
Research will continue, and more lives will be saved in the future, from this group of diseases commonly known as cancer. But, it’s never been and never will be, an easy task to try, to separate something that grows, from within our own body, consuming and destroying us, from the cells that live alongside that would save us. They are both the same being……. When the mystery of DNA was unravelled, it was just the beginning of unravelling the cancer genome, huge progress has been made, but we are very much scratching the surface of a disease, that is actually part of us. It is after all our bodies ultimate betrayal of self. Welcome to Cancerland……..
I love being a patient advocate, I get a great sense of achievement and satisfaction out of it. Sometimes if I’m going through a difficult patch, it’s the thing that gives me enough motivation to get out of bed in the morning.
The good experiences I have had doing this role far outweigh the negative ones. There have been many occasions I have questioned what I am doing, does it really matter? on occasion I’ve gotten a message out of the blue from another patient or family member who said what I’m doing is making a difference
Those acknowledgments fill me back up again with a sense of purpose. As a patient, I had many of my ambitions from before I became ill taken away from me by becoming a stage 4 cancer patient. Having a sense of purpose is extremely important, it keeps me afloat on the sea of uncertainty surrounding me.
I understand that this role isn’t for every patient. I totally get how difficult it is just to deal with cancer or any other chronic illness. People who do decide to go beyond being a patient and get involved in trying to improve all the other stuff that affects our outcomes as patients, aren’t HEROES!! We are just trying to keep ourselves afloat too. Some people might even consider us a bit bonkers, for even trying. It is very much each individual patient’s own idea how to negotiate their illness in the way that suits them best.
In the last year I became aware of a new buzz acronym, or at least it was new to me PPI, Public Patient Involvement. Many patient advocates that have been tirelessly working away trying to influence change with numerous years, might argue that this is what they have always been doing. Only now there is a fancy name for it. Of course there is a lot of truth to that and they deserve great credit for getting involved when it was much more difficult pre social media era to have your voice heard.
PPI though from my understanding aims to move things on to the next step. This is total involvement of patient reps from the outset. This is public, patient or carers suggesting and influencing what the shape of future research should be. Being incorporated as an integral cog in the wheel. This is a huge shift for academia but will also be a huge shift for the patients with experience who want to get involved at this level. This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.
Of course this is, in my opinion, a fantastic opportunity. Seeing research shift from what’s important to the academic community, to what’s important to improving patients lives in our case. It’s difficult to believe that this hasn’t always been the focus so far, but there are many factors at play as to why a research project would get funded previously other than improved patient outcomes. There’s historically been a lot of research for the sake of research and replication of projects, that never went anywhere except a filing cabinet.
But and there’s always a But, can patients realistically afford to become involved at this level. Firstly they will need a certain level of knowledge, so some training will be required to get you up to speed on the whole process. There will be the time expected of patients to participate in focus groups, steering committees, phone calls, answering emails, travelling to meetings, reviewing grant applications. Research projects can be notoriously slow to get up and running so it might require a long-term commitment. We also need to be realistic about what these research projects can fundamentally expect in terms of really changing a system, and how quickly that would happen after the project is finished and submitted.
So let’s get to the nub of it!!
At present we don’t have sufficient numbers of patient reps or carers at this level of understanding. Pressure is growing on the research community to have PPI on all new projects. I have heard recently this demand is delaying grant funding because there just isn’t enough members of the public engaged in this process yet. Certainly a hunger is there, but even as an experienced patient rep, I sometimes find myself wondering how exactly to get involved instead of just hearing presentations telling me about PPI and what it means. We need better direction and linking up of interested parties.
I’ve been involved with patient advocacy almost three years, I know the barriers we face to involving ourselves. At the moment these are largely voluntary roles, can it continue to be so. The patient reps or carers time is as valuable as any other person sitting around a discussion table. In fact, they are the ones, that have the experience of living with the condition, being researched, BUT, they are the only ones not paid for their participation. Yesterday I saw a presentation by Prof Agnes Higgins from Trinity College Dublin, at a Health Research Board of Ireland PPI conference, she asked was it fair to continue to remunerate patients with tea and biscuits while everyone else is paid for their time and expertise.
One third of the participants at the conference were patient reps or carers, we were there largely at our own expense, because we choose to be, the other two-thirds were without doubt there in some capacity relating to their employment. I spoke to many of the patient reps and we all had similar experience, I could only travel to Galway and to the many other similar conferences and meetings I attend to draw attention to problems facing Irish Melanoma patients, because I have a free travel pass. A good friend who lives nearby gave me somewhere to stay the night before, and arranged to collect me from the station and a lift to the conference early next morning. Without this support I could not have attended. Travel, hotels, taxis, food it all adds up so I have had to become very selective about what I can or can’t attend. On occasion, if I think it’s worth me attending, I will fund it myself.
This was the same story repeated to me by other patient reps, and carers, attending the conference. Some, were even sofa surfing to be there. Can we really expect patient reps and carers to carry the extra financial burden of PPI engagement, with no guarantees remember of any improvement in the cause their passionate about. Like I stated earlier we are not HEROES, we do this because we see the faults, we want change, we want everyone to have an equal opportunity to survive and thrive.
Is anyone considering the commitment, these people who may be dealing with a chronic debilitating illness, or life limiting illness like me, or perhaps, every day caring for a family member, with little respite, are willingly making at the moment. Some say, we can’t be paid, because it will make us biased on our opinion of the project, I find that completely insulting, as do others. Nobody questions the other parties involved like this, they declare any previous funding and they are good to go. Why don’t the same principles apply to patient rep or carer. Why isn’t our integrity trusted in the same way. If we are going to really value the commitment of the patient voice in research, does a cup of tea and biscuits really seem fair for their expertise, time and efforts to be involved?
I’ve steered clear of the repeal debate, I haven’t commented or joined in to any great extent.
There are a number of reasons why, most of them are personal, and I won’t go into them in this blog. Suffice to say, anything to do with my uterus, isn’t something you should be spending your time, concerned about.
A number of things have struck me though about the debate and this is looking at it purely from the perspective of a still viably reproductive female who has cancer.
I was originally diagnosed at 33, I had three young children 5,7 and 6 months old, I was attending a well-known cancer centre in north london. I don’t actually remember, if I was asked, before I had my suspicious mole removed, under local anaesthetic if I was pregnant, but I certainly was asked before I had a larger operation, a month later under general anaesthetic to sign a consent that included a declaration stating I wasn’t.
After this operation, I was offered an adjuvant trial, this was an experimental treatment, that I hoped would prevent the cancer from returning, no guarantees it would. With Melanoma in 2004, it’s important to put into context where I was at, and how precarious a position I had found myself. If the cancer returned shortly after that surgery (quiet possible), or at any stage in the future, (up until the approval of the first new viable treatment which came about 2013 in Ireland), unless more surgery could somehow prevent it spreading further, I would have quiet simply died.
When I signed for that trial, I can remember distinctly my Oncologist at the time advising me I should not get pregnant, not then, and because of the experimental drug, not in the future. To me this wasn’t a big concern, I was lucky my family was complete. Whilst still on the trial I returned to settle in Ireland, I never really gave any thought to what would happen if I did accidentally find myself pregnant while on treatment. I think I just assumed somehow naively, that I would be looked after, what that actually meant in reality wasn’t so clear. Naturally, I took precautions but as we know nothing is one hundred per cent effective. Unexpected things happen.
I would attend my appointments, and scans and sign the paperwork without little thought to the consequences if I was. I mean I was always sure I wasn’t pregnant, but if I had been or there was any doubt how different would things have been?
Well for a start any monitoring scans to check if the cancer had returned would have been off-limits for me. I could possibly have had an event free pregnancy, but what would the effects be on a baby born in such a scenario? there was no way of knowing. Would the pregnancy hormones drive my cancer out of remission, and make it active again, leaving me fighting for my life or my children motherless, I don’t have the answer to that and neither does any oncologist? If the cancer had returned and I was pregnant living in Ireland what would I have done?
It was like a snapshot of what my fate might very well have been, in that scenario. The report was based on an interview with Prof. Louise Kenny, she felt compelled to respond to an opinion article by Prof Eamon McGuinness which had appeared in the same paper last week. I’m not going to run through the whole article but the link is above and I’d urge you to read it.
In the article Prof Kenny, states “It is an outrageous lie to say that the Eighth has never changed medical management or adversely affected the outcome of a woman with cancer,” she should know she specialises in the management of high risk pregnancies.
As an example of what she meant, she gives a case history of a patient, called Michelle Harte. In 2010, Michelle a 39-year-old mother of one, was living in County Wexford, but originally from London. Michelle had Malignant Melanoma and it was classified as terminal.
Remember, this is still when there is no treatment available that works, options would have been, Chemo, which frankly is next to useless for this particular cancer and is only ever used as a palliative care option now.
Her best hope at that time, was a Clinical trial. BUT when Michelle presented pregnant for obvious reasons that excluded her from participation, in an experimental drug trial.
She was in the first trimester of her pregnancy and her obstetrician was willing to perform a termination. This would have enabled Michelle to continue on treatment, potentially buying her valuable time or maybe even remission. The termination had to be approved by Cork University Hospital ethics committee, because of the confusion surrounding the legal interpretation of the risk to Michelle’s life. They ruled against the termination saying there was no immediate risk.
Michelles response afterwards was damning “I couldn’t believe the decision [to refuse an abortion in Ireland] when it came,” Ms Harte, who was then 39, told The Irish Times in December 2010. “Apparently my life wasn’t at immediate risk. It just seemed absolutely ridiculous.”
Her only option was to travel to the UK to seek a termination. There were further delays, because Michelle didn’t have a passport or the financial means to go. She had to stop treatment, her condition deteriorated rapidly. She eventually travelled to the UK for a termination, by then she was extremely ill. There are reports of her having to be helped on to the plane.
When she returned she gave many interviews, she was determined this should not happen to any other woman. Michelle died in November 2011 not long after receiving compensation for what had happened her from the state
I was the exact same age as Michelle, when this was happening to her. I too had malignant Melanoma, although mine wasn’t active at the time. I was lucky (although I’d prefer the type of luck where I didn’t have cancer to begin with), by the time mine decided to rear its ugly head again, there were some newly approved treatments.
BUT, I once again entered the world of being asked before each procedure was I possibly pregnant? If I had been, would there have been, no scans, no x-rays, no MRI’s, no Liver biopsies, no medication, until a decision was made on what to do, about the pregnancy. Time is very precious in this scenario, I didn’t have any more to waste than Michelle did, but thankfully I wasn’t pregnant. I could have all the procedures I needed and start my treatment which to date has been very successful.
Having cancer is traumatic, finding out you are pregnant on top must be horrific. But expecting a woman in this condition to get on an airplane to another country, if she has made the decision to terminate, ( I am aware not all women will), or advised it is in her best medical interest to do so is, barbaric.
So I’m not ashamed to say I will vote repeal on the 8th amendment at the end of May, and if it is passed I will breathe a sigh of relief for all the women for whatever reason, that won’t have to travel abroad for a medical procedure, that should be available to them in their own country. I don’t feel any self righteous satisfaction about my opinion, like I have heard so often from the Pro-life movement, I don’t have any religious guilt left over from my catholic upbringing about voting repeal, I am keeping away from the nasty noiseness of this campaign, because for me when I tick that box it will be for Michelle for me & all the other women of Ireland who deserve a choice, when it comes to what happens within their own body…………
The late Michelle Harte who had to travel to the UK for a termination whilst receiving treatment for terminal malignant Melanoma Cancer in 2011
This week has been a pretty mixed bag as far as good and bad events and It’s only halfway through.
It started extremely badly, a phone call with the saddest of news. Pain for a close friend of mine that resonated deeply with me. I have lost a sibling in similar circumstances. It’s extremely difficult to know what to say or do in such circumstances, all you can really do is be there for the people involved. It takes a long time, if ever to learn to live with such a trauma.
I had an early morning appointment, the next day made all the earlier because of how bad the traffic always is on the way to Cork. I’m not so good anymore with mornings, fatigue even after a seemingly good nights sleep remains a problem. The clinic was busy, but I was hoping to get seen ahead of schedule. I needed to get to another appointment afterwards across the city, and the funeral that evening.
My daughter had come with me she’s older now, but when is old enough to deal with such things. I didn’t realise the impact such a visit would have. For me it’s become a “normal, abnormal,” something I live with. I take my tablets, I don’t look sick, sometimes I’m grumpy or tired, the washing doesn’t get done or the dinner might not be made, but I don’t look like the cancer stereotype. I’m still just Mom. So to see me sitting there, in that clinic came as a bit of a shock, and when I walked out from having a line inserted in my arm, it got too much. She had to leave, I can understand, the reaction, I grew up in and out of hospitals watching my mother get progressively worse, feeling helpless, and the unfairness of it all.
I felt so bad at that moment; not that I could have any control over this thing that’s happening, but because I don’t have any. I can’t make this go away, it’s not something Mom can fix. Sure I can protect them from seeing the realities at times but I can’t protect them from what’s a likely out come and as a mother that hurts. It hurts deep, inside your soul.
I often hear about secondary cancer patients detaching from their surroundings, I understand why. No one wants to be the reason their loved ones are hurting. So you retreat inwards, your world becomes much smaller, inside your head, there’s a sadness with you that’s difficult to express. Often when you try, it causes more pain for those who love you, so it’s easier to talk to others in a similar situation. I know that can be confusing and annoying for families but sometimes it’s the only way we know how to cope. Your living on a red alert warning, constantly just missing that bullet, but knowing it will inevitably get its target…….. And no one can tell you it will be Ok, it makes you weary but then you can’t sleep either.
My friend collected me to travel to the funeral, we were going to take his bike, but the journey home in the dark was long over the mountains with loose sheep and winding roads, so it was safer to take the car. It would have felt nice, to feel that sense of freedom you only get on a bike ride, brushing off of the cobwebs some adrenaline therapy. Fearless……It’s important to feel that way we spent so much of our lives being careful and towing the lines, we forget what it is to feel a little good danger. What it is to feel free especially as we get older and get tied up in family life, managing finances…….as mothers we often judge ourselves by how we think others are judging us, instead of just doing what makes us happy.
Life can be difficult, sometimes more for some than seems their fair share. Maybe you didn’t get a good start in life, maybe you got the best, maybe your parents were distant, maybe they wrapped you in cotton wool, maybe you have tried and tried and tried but things just never seem to go right. Maybe when life knocks you down, you get right up again and maybe you can’t understand people who don’t have that strength.
Maybe it’s not so easy to live a life as free as you please, it’s certainly not so easy to live in the moment on a continuous basis. It’s just not practical because none of us are ever really alone or totally independent. We are born into families, we choose people to spend our life with, spouses, children, friends, neighbours, lovers, workmates. We are connected, so when someone we love is going to leave, and we are powerless to stop it, everything is in a state of flux……….. that bit is hard, painful.
Today, a complete stranger made me cry I had to leave the supermarket in a hurry. It was such a spontaneous act of kindness it blindsided me. The assistant asked had I any vouchers, when I said no, the lady behind said use mine, I know what it’s like not to have any, and you’re doing a big shop. She was only getting a couple of items and couldn’t use them, she saved me a substantial amount of money, not because there was anything in it for her, she had nothing to gain; except maybe she actually had everything to gain, because when you go through life, looking out for others, even though they might be strangers it makes the world a better place not only for you but for everyone you connect with. It was something so simple, so unnecessary for her to do it reminded me of all the kindness that can be freely available, if we just shared it about.
As you go through life, pack in, as much, as you can, love a lot, have fun, smile more, be adventurous, feel the adrenaline while you can, hold someone’s hand when they need it, hug lots, don’t judge people who have a lot, or those that have little (life can be hard regardless), let people go that don’t want to be with you, cut people a little slack, always let someone go ahead with two items, pass on, the in time parking ticket, let the screaming baby go first at the doctors, talk to the guy sitting next to you, he might be the one you fall for, don’t be so quick to beep at the car in front, the girl on the phone from the call centre might hate her job already don’t make it worse she has bills to pay too.
Some of these might not change your life, but, because we never know what’s going on in another person’s mind…… that little act of kindness, might just make all the difference and keep them going a little while longer, make life seem a little less bleak……