A curious thing. . .

I realised this morning that my bathroom cupboard is still full of all the trappings of my pre-menopause, pre-chemotherapy life. Why have I not thrown it all away??? It seems bizarre that I haven't, given the fact that I've had hellish problems with it all over the years and had in fact been in discussions with my GP last year about the possibility of a hysterectomy. I wonder whether it is something in my subconscious not wanting to admit that my days of fertility are at an end?

That would be very strange considering that being a mother was not exactly ever on my list of priorities. Then again maybe it's an age/milestone thing? Perhaps subconsciously I am unable to throw everything away because it means admitting to myself that I am now most definitely in 'middle life' and having to deal with the consequences of growing old(er). Part of me also wonders whether it's just my brain still not able to come to terms with how cancer has affected my body - permanently.

All very strange to my way of thinking because whilst very few women 'celebrate' reaching the end of periods, mostly it is a huge sense of relief not to be bothered with the hassle of it all any more. I remember back in January when I'd realised that periods had stopped after my first cycle of chemotherapy, thinking 'well that's one thing less to worry about' and just being grateful that I wouldn't be dealing with that as well as all the chemo side effects.

Like I said - all very strange. . .this cancer thing, it messes with your head!

Stress

Just over a week ago I finally reached breaking point with all the flashbacks and nightmares etc and finally admitted defeat and went to my doctor for help. He has diagnosed me as having post traumatic stress disorder and thinks I need to see a therapist in order to try and get some closure after all the horrible nearly dying stuff. I've been put on some anti-depressants and given contact details for a therapist. Part of me has breathed a huge sigh of relief - I'm not going bonkers after all! However, part of me also feels guilty and, if I'm honest, slightly ashamed at getting in this kind of state in the first place. I know that's silly but it's been really hard to shake those feelings off, even though many medical professionals have told me that this sort of thing is actually very common after the experiences I've had. I'm normally the shoulder that everyone else cries on, so asking for help was really quite difficult. Also in the back of my mind I felt that I was letting down all those people who had praised me for coping with everything so well - I didn't want to shatter their illusions and neither did I want to admit defeat and admit there was something wrong.

Apart from the medication and the prospect of some much-needed therapy, I have come across two other things that have really helped me to deal with all of this. The first is Breast Cancer Care's Moving Forward Resource Pack which made me realise that what I am feeling now that active treatment is over is completely normal. I can't tell you what a relief it was to read through the pack and recognise that I'm not alone.

The other thing that is helping a lot is this book - The Cancer Survivor's Companion: Practical ways to cope with your feelings after cancer. It contains lots of helpful advice, tips and tricks for helping you to cope with how cancer has affected you and how to try and move forward after treatment has finished. It's a brilliant book that has already made a difference to me.

Where is the happiness button?

I am now officially two weeks from the last piece of active treatment and desperately trying to process everything that has happened to me over the last few months.

Nightmares and flashbacks are plaguing me with visions of my time in intensive care and the horrible fall. I just don't seem able to get them out of my head. My husband tells me that I cry and sound distressed in my sleep most nights and I'm getting flashbacks several times a day. They creep up on me unawares and leave me feeling tearful, depressed and scared. Surely after 7 weeks this should be starting to fade away now? The most frightening aspect of all this is that I feel like I've forgotten what it means or feels like to be happy, which is a very scary place to end up in.

I am also dealing with feelings of guilt at what this has done to my husband because the stress of it all has exacerbated a heart condition and is giving him angina. It's not uprising but equally it's hard to come to terms with the fact that my poor health has so badly affected his wellbeing. He's carried the burden of my care all these months and it has taken its toll on him.

The trip to ICU, knowing that I could have died, witnessing and being unable to prevent the horrible fall - goodness knows that would all be hard for anyone to cope with! To quote a popular cliché; we have been to hell and back more than once! I am so lucky to have his fabulous support, just knowing he's by my side has helped me so much.

Now though I am in a very strange place emotionally. I know that I need to deal with my feelings, find closure and move on and that I need to ask for professional help to do so.

But that's the hard thing. . . asking for help is not something I find easy to do.

Is it a sign of weakness or failure?

Well obviously the logical part of me knows that it is neither but it is a tough thing for me to admit that I need outside help. I am so used to being the shoulder that everyone else cries on. It feels alien having to reach out for help on my own account. I want, no that's not right; I need to take that step, to accept that there are some things you just cannot do on your own. It's not a cry in the wilderness because there are people who can help - if I ask.

Part of the problem is that I feel like I am also having to cope with the burden of everyone else's expectations. All along the way the medical staff and my friends and family have told me they are inspired by my fortitude, bravery and general stoicism.

But here's the thing folks; being brave has nothing to do with it! You just have to suck it up and get on with it. I want to live therefore having treatment was the only sensible option, it's as simple as that.

Bravery, 'courage under fire' whatever you want to call it, I don't see that as being a good label for me. These are descriptions of those who put themselves in danger for the sake of others. I was doing this for me, not for anyone else's benefit. I just had to take a deep breath and get on with it and that's what I did. No one could have predicted all the crap stuff with Docetaxel or that I'd end up as ill as I did.

It just happened and it doesn't happen to everyone.

But I am still here! I might need help to move on but I am here and that's what counts the most!

I know that my happiness button is inside me somewhere lying dormant and waiting for a gentle push. Just because it's hiding right now doesn't mean it will stay lost forever. I may be looking up from a deep abyss but at least I can see that there is light. It's not very bright, a long way off, I just need a little help to reach it.

Moving on after active treatment has finished is one of the hardest things that anyone with breast cancer will have to do. I think so many of us breathe a big sigh of relief when we get to the end of surgery/chemotherapy/radiotherapy, even if there is hormone therapy to follow. Sometimes it's only then that the enormity of what we've been through sinks in and there is an emotional fallout to cope with - just when people around us think we are finally on the mend.

In many ways it's just as tough as living through all the trauma of active treatment because it seems like your support system has been wrenched away. This is the time for pouring balm on a troubled psyche - it's the heart, mind and spirit that need nurturing now. That's where I am now - looking for a way out of the turmoil that has invaded my peace and understanding that this is not something I can do alone.

I will find the way upwards, onwards. It is possible to do that, there is help out there to enable me to do so. I just need to take that first step.

I want to believe that I can be happy again.

I can be happy again.

I can. . .

A treatment update part 2

I have now officially finished active treatment. I had 16 radiotherapy sessions and I've been started on two years of Tamoxifen.

The last few weeks have not been without their dramas though - I never do things by half! Less than a week after being discharged from hospital I had a very serious fall whilst struggling up some steps using the walking sticks. I fell quite a distance onto concrete outside our house with my treatment side taking almost the whole impact. The end result was 4 broken ribs and excruciating chest pain, plus I was scared I done damage to my mastectomy site but it turned out that I had two broken ribs and a haematoma on my lung directly underneath. I was given Tramadol to help with the pain and the following Monday I started my daily expeditions to the other side of the county for radiotherapy. I am enormously grateful to Go North Devon and the North Devon Cancer Care Trust who fund a subsidised service that collects patients from home and drives to the hospital direct. I couldn't have managed to get to treatment at Exeter very easily without this service. We live on the opposite side of the county and it would have been very expensive to get there using our own car. I would leave home around 1.45pm and not get home again until about 7pm - a very long day!

The first week was nothing short of agony because of my ribs and on day four for some reason the radiographers couldn't get me lined up properly. It took far longer than normal, was very painful and reduced me to tears. The staff were nothing short of magnificent; they were so upset that they were hurting me when they didn't want to and during the course of my treatment showed me a huge amount of compassion and care. A brilliant example of the NHS at its best.

Apart from a small patch of radiation burn the treatment has gone pretty much without any problems - a nice change for me! As the three weeks came to an end I was getting more and more exhausted though. Nothing really prepares you for the daily grind of treatment 5 days a week and by the end I'd had enough both physically and mentally. My body demonstrated this by presenting me with a 4 day gastric bug just a week after treatment was over. I kissed goodbye to much of the weight I had managed to put back on so I'm back on the food supplements again. I am happy to report though that my mobility is greatly improved. I'm now only using one walking stick and that's when I go out, at home I'm now pretty much managing without any additional support.

Physically I am over the worst now, emotionally though things are completely different and I'll talk about that in my next entry.

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.

so this is how it's going to be?

I think the penny has finally dropped about how having breast cancer will impact my life from now onwards, and it's a very scary and also very depressing realisation.

Currently my life feels like it is dominated by trips to the hospital/doctor/nurse, dealing with crap side effects from the chemotherapy and what seems like never ending problems with the Hickman line. Is this what life has devolved down to? Is there nothing else in my life but worries about treatment, its side effects and about whether the cancer will come back? The short answer is yes and it scares me that this is what it adds up to right now!

I don't want it to be like this, but at the moment I can't see how to change things. Part of this is I think born out of the fact that the last few weeks have been nothing short of grim on the side effects front, with everything from terrible mucositis, vomiting, diarrhoea, and extreme fatigue, not to mention bursting into tears at the slightest provocation. My husband deserves a medal for dealing with all of this!

I've haven't written here because I have found writing about this, or anything at all, very difficult. A combination of not being able to find the right words, just not being able to write for physical/emotional reasons and a huge frustration that my brain is so fogged up by the chemotherapy that writing is mentally very taxing. I have to check everything several times because I think one thing and write another and my spelling and general writing skills have deserted me. 

This is apparently a common side effect of chemotherapy, but it's an insidious thing that creeps up on you unawares. You find youself using the wrong words for things, forgetting silly things and needing to write lists for just about everything, because if you don't make a note of it, you can be damn sure that you'll forget it!

I think the combination of all these things has really dragged me down emotionally and now I am about to start phase 2 of chemotherapy (4 stronger doses of a new drug - Docetaxel) I feel scared about what the future holds for me.

I have to find a way back to sanity.

I don't want my life to be defined by cancer.

I am NOT a victim, I am a survivor. 

I just have to find the best path to survival - nothing difficult there then!