There is no point me retelling the story of what happened in the nineteen days between getting sick with pneumonia and the 20 May 2017, the day my diagnosis with blood cancer was confirmed. Suffice to say that each year since the gap between the 28 April when I first became sick and the date my diagnosis was finally confirmed seems incredibly long. I retold the story quite clearly and reasonably succinctly a year ago exactly today:
Nor is there a need for me to retell the story of what happened during my 15 months of watch and wait described by my blood cancer doctor as “a stormy course” which involved two operations, several hospital stays, multiple infections, and being forced to give up working. Nor need I speak of my experience going through chemotherapy. You can read about most of all that in previous articles I have written:
Instead today I want to try and capture how I am feeling right now in light of this anniversary, and what is going on for me as I look into the future.
None of what follows in any way detracts from the huge sense of gratitude I have this morning that I am still alive. There are many with blood cancer who do not survive this long. And this experience has certainly made me appreciate being alive. But a cancerversary is also a day of deep sadness for me, and many others
I am convinced that for most of us when we are given a diagnosis of blood cancer there is a form of grieving that happens. At the very least we experience a loss of that sense of invulnerability. For many of us the unspoken but immediate question is “How long will I live?” Suddenly we feel we can no longer assume that we will have a long and healthy life. That sense of mortality can have a chilling effect on our heart. But it can also sometimes be incredibly hard to share with others. It is a huge loss. And it often has massive emotional implications. I previously tried to address this all too often unspoken question here:
If unspoken that fear of death can also lead us feeling not only a huge sense of grief but also a strong feeling of aloneness. And as we walk through the life changing and sometimes expectation-destroying consequences of blood cancer, that sense of a isolation can be, and often is crushing. I have had many moments of what I call “Elijah syndrome” where I complain that I am utterly alone and feel hopeless. In Elijah’s case he even prayed “God, kill me now” (See 1 Kings 19). I am not ashamed to admit that I have got to that point a few times too.
What has not helped is the pressure from within and at times from some other people to “just be positive” all the time. I have concluded that such a pressure is unhealthy. And so I now believe that, whilst we must not let our emotions dominate and control us, we also must not try and suppress or ignore them. We cannot succumb to the tyranny of the positive:
Fighting the inevitable
I have spent most of the last four years wishing my blood cancer and its many consequences away. I have longed to “return to normal” and to be able to go back to work. I have wished that I could still go for a long walk in the forest, or around a city, or at a theme park or another attraction for hours on end. In contrast as of right now I am not feeling able to go on walks at all. Do I hope for some improvement in my energy levels and mobility? For sure. But do I now expect a return to anything resembling “normality”? Not so much.
Now It is worth stating at this point that many blood cancer patients are less impacted in terms of their activities of daily living than I have been. Many of my issues are caused by other conditions that have been brought on by the cancer, its treatment, or the infections I have experienced going along the way. Many others are able to work and walk throughout their cancer journeys. Even many who face acute and aggressive blood cancers, with far stronger treatments than I have had, will bounce back relatively quickly.
But do not be decieved. No matter how good a blood cancer survivor may look to you, no matter how much they may seem to have regained their “normal life”, now matter how far they can walk, no matter how many hours they can work, you do not get through this experience unscathed and unchanged.
There is no going back to the old life. Any more than as a Society we are going to be able to simply “go back” to how life was before COVID19 and pretend it never happened. The trauma of the last year or so has affected people in different ways. But surely no one has come out of it without something in them having changed, without some impact. In some cases, of course, for both pandemic survivors and blood cancer patients, there may even be some positive changes. Right now I am definitely a more compassionate person than I was four years ago. And I understand my emotions much better, and better know how to handle them. Even though there have been many points in the past years where unfortunately my emotions have ruled me, sometimes causing pain to others.
But despite any silver lining to the clouds of cancer, the battle scars for most of us are deep. And we will never look at life the same again. Just like you do not “get over” the death of a loved one, the departure of our sense of health, wellbeing and invulnerability should not go unmourned and cannot be forgotten.
As I write this I remember not so much the numb feeling when the consultant confirmed what we had already suspected for some weeks, but rather the sense of desperation as I spent a completely sleepless night crying completely alone downstairs in my lounge, not wanting to wake the family. It would not be the last such sleepless night of tears.
But I also remember the nurse who was running the helpline I rang in the middle of that night. I had not been offered the chance to speak with a blood cancer nurse for all those weeks. And in my sense of utter emotional crisis I had the cheek to ring an emergency helpline run for patients of the largest European blood cancer centre, UCLH. Even though I was not a patient there, I remember thinking “Well it doesn’t actually say it is only for their patients!”
His humanity and kindness took me down off the emotional precipice I was on. He seemed concerned on hearing how my infection just wasn’t going away, and surprised by the choice of relatively weak antibiotics I was still on. I was at that point visiting my local hospital daily, having been sent home from the wards even though my infection was far from cured. Nobody seemed to understand that I was already immune compromised and so needed stronger treatments. I explained to the nurse that I was needing a wheelchair to get around at the hospital and was barely able to walk to and from the toilet at home. He suggested I may want to try and get an urgent referral to their hospital.
Within three days I had done just that by speaking to my GP, and the same day the referral was faxed I was admitted to UCLH severely unwell and beginning to go into sepsis. They treated me with much stronger antibiotics and I gradually improved. That nurse saved my life. I am forever grateful for him, and for all the many other skilled and compassionate health care professionals I have encountered along the way.
When the trauma of the initial sickness, the subsequent trauma of needing emergency surgery on my tonsils which were blocking my airway, as well as other infections, the crushing of fatigue, and then the experience of having chemotherapy was finally over, I was expected to be happy. Somehow, however, that was when the emotional toll of all those months came home to roost. And, like many, far from being a time of celebration being told I was in remission was actually the hardest emotional time of all in the whole journey to that point:
What bothered me then, still bothers me now. The unholy trinity of fatigue, infections, and inflammation which together still combine to ruin my life and all my hopes and dreams:
And so, since that time I often ask myself a question I have tried to help others answer:
Coming to a place of acceptance
I really hope this doesn’t all sound depressing so far. Though there has been plenty of tears along the way, I have never completely given up hope. But my hope has needed to be redirected. I no longer dare to dream of a future where I am fully healthy. Of course if some miracle of modern medicine or supernatural power comes my way I will be delighted. But I no longer expect that. I am no longer fighting for that.
My doctors have told me I will almost certainly not work again, and I believe them. I stress again, many blood cancer patients CAN work again. But even for those apparently going about their normal lives, coming to this place of acceptance of the new normal is crucial for mental health and wellbeing.
A good friend of mine, who I interviewed for this site, once told me it took her five years to come to a place of acceptance about her chronic degenerative back condition. But that is very far from meaning that she lives without hope or joy. In fact she is one fo the most joyful people I know. And she is a counsellor helping others. You may find our conversation helpful:
What does acceptance mean?
Put simply, it means you no longer fight with all your might to “get back” to a preferred past, but that despite your painful present, and unpredictable future, you choose to build a new life based on reality not a pipe dream.
I am told that my current medical conditions (and I have several in addition to blood cancer, many of which stem from it and the damage it and its treatment have done to my body) will hopefully not shorten my life. That is assuming of course that I do not catch a serious infection and succumb to that. So I am under no illusions that I can guarantee a long life, although nor of course can you.
But I also realise my life may well consist of an ongoing struggle against the symptoms that bother me today. In short, I accept that I am disabled and in poor health.
Far from making me depressed, coming to that place of acceptance has enabled me to find new hope. I no longer hope for complete cure, but instead for small incremental improvements. I no longer dream of returning to work, but ask instead myself how can I help others through a bit of writing, or just by being there for people.
I no longer wish everyone I know would understand what I am going through and show compassion, but instead am incredibly grateful for those God has put in my life who DO get it, and who offer kindness and understanding. And I make it my goal to always show compassion to others.
I no longer wish I was “back to normal” but instead ask God that I may live my best possible life in the here and now facing the realities that I face. I no longer focus on how unfair this all is, and how much worse off I am than many others. Instead I am grateful that I am actually so much better off than many others. There is always something to be thankful for.
I am grateful for every day that I can be alive, for every breath that I can breathe, for every interaction with another human being that God brings across my path. Yes, even those hard conversations that break your heart.
I no longer feel alone, but am so thankful for others that are for me, that are on my side, that understand something of what I am going through. I have lots of people, both professionals and those special friends and family who understand, who are in my corner, rooting for me. I like to imagine them as those who wipe my brow during the pauses in the boxing match that is my life and who encourage me saying “Keep going! You can do it!”
In a sense starting this very website was part of my journey of acceptance. It demonstrated that I realised blood cancer and its consequences were a part of my life. It was a recognition that others also struggle and that if a group of us share our struggles, alongside things we have learnt along the way, we can ease each others burdens just a little bit. Only recently have I put my diagnosis into all my social media profiles, and that too felt like a further step in this journey of acceptance. It is also out of a desire to help others feel they are not alone and to point them to the community which, though I founded it, has definitely given me more in return than I have given it. Sometimes when we choose to focus on how we can bless others, we find ourselves more blessed in return.
Looking better than I feel
Right now I am struggling with my energy levels and with my mobility. Both seem to be declining at the moment. As far as we know this is not because of a return of my cancer, although I have been told that due to my markers it will be back. I actually concern myself less than you might suppose about that, since I know that there are other treatments I can take at that point which should once again send cancer back to the dark ages.
My increased fatigue and reduced mobility is likely a combination of such things as not being able to get rid of a simple cold virus for well over a year (and the resultant rhinitis and worsened asthma control currently requiring double the inhaler doses I used to take), and the poor control of my blood pressure, circulation, pulse and breathing rate caused by autonomic dysfunction.
I work with the various doctors, and with my physio, to try and find ways to reverse the tide, and stop the decline which at the moment leaves me fearful of losing all my mobility. Medicines that I am trying to attempt to improve things also come with side effects, especially when you start them.
But on the outside I look great. Ironically partly because one of my treatments has facial flushing as a side effect. My new ruddy features seem to make me look really healthy even on days I feel dreadful! But perhaps it is also the fact that mentally, emotionally, and spiritually I am in a better place coming out to my facial expressions. Indeed my mood is much better than it has been in previous times. I have a sense of peace within the storm, even though some dreadful things are occurring.
It used to upset me when I was feeling dreadful, but someone said I looked great. I used to feel “how insensitive!” and get annoyed. But now I realise that it is surely much better to be perceived as looking much better than I feel than the other way round! Would I really want everyone I meet to say something like “You look dreadful, I think you better see a doctor!” Clearly not! So, I am happy that I look good, and am trying to keep myself well groomed.
I have also decided to treat myself a bit better than I have in the past. In an effort to consider others before myself at times I have not really looked after my own wellbeing. I haven’t given myself permission to treat myself. And I haven’t been very kind to myself in my inner world. It is amazing the things we sometimes say to ourselves in those quiet places. That has to stop!
The renewed sense of God being with me, for me, and even having a brighter future for me, has been tangible lately. I am confident that he is also in my corner rooting for me. I am comforted that he has forgiven me my many sins, that. he loves me, that he cared so much for me that he even sent his only Son to die for me, and rise again to give me hope and an eternal future.
So I look forward into my fifth year of being labelled as a patient with much more peace than I have had before. Do I still cry at times? For sure! Do I have my moments of anxiety that I must handle? Absolutely! Are there things that still bother me? Most definitely. But I face all that through the lens of hope. Not an unrealistic hope any more. But hope nonetheless.. Hope that better days are coming. But an understanding that even through the dark days I will not be abandoned. I am so thankful to God for those he has sent into my life to encourage. me. That, together with my renewed sense of his presence, gives me strong sense that I am not alone.
I hope that if you are struggling with the idea of acceptance, you too may get to that point, whether you have a faith or not. If you are struggling with your own blood cancer journey, then I invite you to join us on our Facebook Group and also our weekly Zoom call. Please email us if you are not on Facebook and we will send you the link.
Thanks for reading. Thanks to those of you who pray for me. And big thanks to those of you who have reached out to me and encouraged me in one way or another over these past four years. I will hopefully be bugging you for many more years to come!