Stepping back from the precipice - a treatment update

It has been a very scary 5 weeks, during which I had two allergic reactions to Docetaxel and two episodes of neutropenic sepsis, the last of which nearly cost me my life.

All the trouble began when I started the course of 4 Docetaxel after the 4 AC. Up until that point I felt that I had been generally dealing with things quite well physically, even if I was occasionally struggling with it all from an emotional standpoint. I was in no way prepared for what Docetaxel would throw at me, even though I had read on some cancer forums that it can be a tough drug to cope with.

The first time I had treatment I had an allergic reaction as it was being administered. Scary enough but at least I was in the chemotherapy unit and the staff arrived in moments to deal with it. Everything was fine for the first six days until I went to my GP surgery to have the Hickman line flushed etc., as normal. At which point the practice nurse said she thought I had a temperature - she wasn't kidding it was almost 40oC! I went from feeling a little unwell to being very ill in the space of about 30 minutes and had to be rushed to hospital where I spent 5 days being nursed through neutropenic sepsis. At the time everyone treating me thought it likely that the Hickman line was the source of the problem but I did also have an infected toe, so the line was left in and I was pumped full of antibiotics before finally being allowed home.


Two and a half weeks later I have my second Docetaxel treatment and manage to get home before things started going wrong. I developed a high temperature and had a very tight chest and was advised to go to hospital where I was admitted for the weekend with a delayed allergic reaction.


So we get to the following Wednesday and I am once again having the line flushed at the local surgery. This time I'm not taken ill until I've been back home for about an hour at which point all hell breaks loose! I developed severe rigors and a very high temperature which caused me to have a seizure and briefly stop breathing - thank heavens that my quick thinking husband was at home with me and able to summon an ambulance! 


By the time I got to hospital I was in a very bad way indeed. I had a temperature of almost 41oC and my blood pressure had dropped to almost fatal levels, whilst my heart was racing at a dangerous speed as it desperately tried to keep my blood circulating. I spent 3 hours in A&E's resuscitation unit whilst the doctors tried to stabilise me and then it was decided that the best place for me was the intensive care unit. I had an emergency central line put in so that they could give me drugs to improve my BP and to look after my heart, as well as a broad spectrum antibiotic. At this point the doctors were convinced that the Hickman line was the source of the infection, so once I was admitted to intensive care it was removed. Cultures taken from it and blood tests confirmed that it was indeed the source of the infection.


I spent 5 days in intensive care before being nursed in a separate room on a ward and was allowed home after 8 days. I have been left incredibly weak and 10 days on I am still only really able to get about with the aid of two walking sticks, although that should improve as the days go by and I'm able to get out more. I also lost a lot of weight and as a result I am on a special diet and supplement drinks in order to try and remedy that.


As a result of everything that has happened my oncologist has decided that chemotherapy will be stopped as she feels that the risks far outweigh the benefits of having the two final treatments. I cried when she told me as I had nightmares whilst I was in hospital about what would happen when I had my next treatment!


When I saw my GP earlier this week he went through all the notes he'd received from the hospital and said that I was very lucky to be alive. Part of me still can't believe that it all happened and whilst I don't have clear memories of a lot of it, I am still having flashbacks and bad dreams about it all, so I am very relieved that I won't be having any more chemotherapy.


Once again I take my hat off to all the staff at the local hospital who gave me such wonderful care. I am so lucky to live near such a good hospital!


So what happens now? Just before I had the second Docetaxel I went to a planning session for the radiotherapy treatment which was due to start mid-June. Whilst it hasn't yet been formally confirmed, I'm pretty sure that this will now be brought forward to start shortly along with my starting on the hormone regimen.


The whole Docetaxel experience has been an absolute nightmare for me and I am hugely relieved that it is now over. I should also point out that what happened to me is very, very rare. Yes, chemotherapy patients are at risk of neutropenia which is why we are told to be so careful with hygiene and to look out for signs of infection, but it is only a small percentage of patients who develop it and an even tinier one that ends up in the condition I did. 


Now it's just a question of waiting to see when the next phase of treatment will begin and to count my blessings. I am very lucky to be here to write about it and believe me, I do know just how lucky I am!

D.A.D.A or 'where I am now'

This is an acronym  for Denial, Anger, Depression, Acceptance and is most often used to describe the steps one goes through in the process of dealing with a life-changing event. Dr Elizabeth Kübler-Ross used the system (denial, anger, bargaining, depression, acceptance) as a method of describing how her patients dealt with being diagnosed with a terminal illness but it has since been expanded to cover any significant life-changing event. I am using D.A.D.A because I don't need to bargain with anyone or anything at this stage in my life, the rest however I think will prove an accurate reflection of how I process what is happening to me right now.

Where I am now.

I am at a crossroads.

I am angry and depressed by turns.

Why did this happen to me?

Yes, I have other health issues but on the whole I have led a fit and healthy life (okay so I smoked briefly, but it was briefly a long time ago). I was a full vegetarian for over 25 years and even though I now eat small amounts of fish and poultry, until chemotherapy came along I had a very balanced and healthy diet. I rarely drink and have exercised regularly my entire life, so why the fuck did cancer pick me?

It is very easy to get sucked into life's general culture of blame. Partly because lifestyle does play a huge part in whether we succumb to certain cancers and also because the medical profession asks you so many endless questions about diet and exercise, you end up feeling like there must have been something you could have done to prevent this.

Did I miss that something? Did I make a mistake somewhere and somehow bring this on myself?

This is the stumbling block, the large rock in my way. I want to believe that it is just bad luck, and part of me acknowledges that that is very likely the case, but still I want, no need, to know why/how this happened to me. The problem is that I also need to accept that I'll never know and that makes me angry. I want answers dammit, why can't someone tell me what I want to know. . .

The doctors can't help, they are there to treat the physical results of cancer not to speculate on the why if the cause isn't obvious. They point you in the direction of dealing with the here and now - get treated, move on, deal with it as best you can. That's not to say that they aren't caring and compassionate, they are but they don't have the answers I'm looking for.

And I need answers, someone or something to help me make sense of it all. I am angry because I know that the answers aren't out there and that in turn leaves me despondent and depressed. I know I can't change what I did in the past, that blame is not a pathway to either acceptance or understanding but it is where I am now. I need someone to tell me how I got here.

Anger is a big part of my life, there are days when it consumes me. I yell at the world, at the cancer, at anything, even the smallest and pettiest of things is likely to set me off.

I scream, I cry, I rant and rail.

But the sheer futility of it all eventually overwhelms me.

Depression sets in.

It takes my hand and leads me to places I don't really want to go. I am looking through shaky fingers at a misty twilit world, full of half-formed demons. Demons of my own making. They don't chase me but look defiantly back, daring me to accept or deny their existence, waiting for me to take their hand and run off with them into the darkness. In their presence the anger I felt dissolves and I weep for what I see around me - the last vestiges of an unchanged life, a life that is rapidly being swallowed into the mist. I want, almost need, to run off with them and that scares me almost as much as the future does, because I know I could get lost there and stay lost for a long time.

Things will never be the same again.

The logical part of my mind knows this and wants to accept it, but the siren song that is both anger and depression encourages me to cling onto what cannot be, what will never be. I cannot go there again.

Yet still I cling on. Barely. My finger tips trying to grasp the last few precious moments of the 'life that was.'

Reality has not yet set in. Will it ever? Will I ever look through my fingers and see the beginning of brighter, better things?

Part of me hopes that the brightness is there, just waiting to peep over the horizon but somehow it knows that I'm not ready for the hazy glow of a new day's light, at least not just yet. Before the sunshine, you need the rain, before the day you need the night. To know life is to understand that you cannot have happiness without your share of pain. Is this the message that cancer is trying to tell me? I don't know.

I listen, I wait.

I can feel the pouring rain and though I am soaked, somehow I know that somewhere there is a sun waiting to dry me and warm me.

One day the sunlight will be a reality.

One day.