Less pink...more think

Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.

Martin Luther King

 

A couple of things have happened to provoke some thought that I felt I should put down. Firstly its Pink October and as we reach the end of this somewhat controversial breast cancer awareness month it has got me thinking. A friend of mine sent me an excellent link (and well worth a read) which is a blog by a woman who like me and my friend is terminally ill with metastatic breast cancer. Her blog is called "But doctor I hate pink". It is an honest look at the realities of breast cancer and it challenges the notion of breast cancer being the "curable" one. I have mentioned before that I am uncomfortable with general public perceptions of breast cancer and I feel strongly about the way in which the media, to my mind, trivialises it. Through various campaigns we have been drip fed the notion that catch it early enough and it's all ok. REALLY! I caught mine early and I am definitely not ok. This cancer will kill me.

 I was further forced to think about all of this when at chemo clinic this week I met a woman who has recently been diagnosed with bone mets and is undergoing treatment. She was diagnosed 17 years ago with breast cancer and had a double mastectomy. In the intervening years as she put it she "fell under the radar". Her cancer is advanced and she is troubled by the fact that she didn't look into her health problems sooner. As a woman with no breasts she didn't attend for yearly mammograms and so the spread of her cancer went undetected until now. She seemed to blame herself. I too blame myself that I didn't demand to be seen sooner when I was experiencing problems due to recurrence after treatment. I wonder if I would be cancer free today had I known the right questions to ask. Had I demanded a mastectomy in the first instance would I have a different outcome. Who knows, maybe, probably, who knows. What I do know is that women die of breast cancer and I will be one of them. Another thing that I think I know is that Pink October has a tendency to brush such realities under the carpet.

To my mind the very pinkness of breast cancer awareness is in itself a from of trivialising it. I remember buying my first red( I much prefer red it connotes danger doesn't it) ribbon for AIDS awareness. It didn't feel like I was adorning a playful little cute ribbon. It felt like a real, grown up statement. Now this of course was a very big political issue due to the stigma attached to it and I have always felt that it was very worthwhile to raise awareness of it. More than 20 years later things have changed. The breakthroughs in medical advancements are incredible and the shift in public perceptions pretty amazing ( not everywhere I am well aware). So why is pink October so different? Many people have commented on the hijacking of the campaign. The glamorising of it even. Does it make people feel good whilst actually being able to indulge in consumerism. Probably. Without doing any research I am just thinking of what Pink October said to me over the years. I cant honestly think of much. That's how seriously it gets the message across about the reality of this disease. When I think about it my mind conjures up images of parties and rose wine and high heeled shoes. Good god, how frightening. My point in all of this is that if this is the medium for the message then as in the words of Marshall McLuhan does the medium become the message? If so then is it any wonder that we don't take our diagnosis quite as seriously as we might?

I mentioned that October 13th was Secondary Breast Cancer awareness day (note DAY). It came and it went and for those of us not living with this condition it passed with very little awareness. Some argue that we are the ones who the public would rather not know about. We will not survive. We are not the happy ending. I am inclined to agree. we don't present as a positive outcome so therefore don't fall into the fluffy feel good category. Having Pink parties would perhaps seem a little crass in the face of us who are dying. I could write forever about this stuff, BUT my point really is this Whatever it is that desensitises us to the realities of breast cancer we have to address it for what it is. We have to recognise the dangers and take our heads out of the pink clouds.

It's a new day

Why do so many of us not give ourselves permission to be alive until we are absolutely assured that we will die? ...If we are not in [this present millisecond of life and conscious experience], we are not alive; we are merely thinking our lives.  Yet we have seen so many die, looking back over their shoulders at their lives, shaking their heads and muttering in bewilderment, "What was that all about?" 

Stephen Levine

I have managed to get through what was a very tough week. Every day last week I woke up with a sinking feeling that made me want to stay in bed with the covers over my head. I didn't want to face not only the day ahead but my life in general. I got through this by reminding myself that I must live in the day and accept how I am feeling. I have talked a lot in this blog about taking one day at a time and the virtues of it. I had lost sight of this philosophy temporarily and it unnerved me. I had to keep reminding myself of it and despite struggling mentally (and subsequently physically) continuing to remind myself, did eventually bring me back to some feeling of equilibrium. My mind is powerful. It has the power to change my entire existence. Last week I sank into a depression. I couldn't stop thinking about my future and the limitations of it. I was no longer focusing on my recent positive news. I was projecting and homing in on the bad stuff. This is damaging and it crippled me. I believe that when your mind is in a dark place it manifests itself in your physical wellbeing. I have written about this before and I actually re read some of my own blogs for inspiration. My body aches at the moment, that is a fact. I  have undergone a full regime of chemo and the after effects are evident. In particular arthritic symptoms are wearing me down. Every joint hurts, even my toes. However this morning I got out of bed, still with the same pain, but with a different mind set and the pain is much more manageable. I have a full day planned and I am feeling good. I have tricked my body into feeling better through positive thinking. I have gradually built my self up over the last few days to a better place through tackling small things and interacting with more uplifting experiences. Just spending a couple of hours on Sunday evening looking at new research into my type of cancer helped me. We can't change the past, we can't predict the future but we can enjoy the moment. Today is a much better day thanks to remembering to take one day at a time.

Awareness

The 13th October is Secondary Breast Cancer Awareness Day, a day dedicated to spreading the word about the incurable side of the disease, the side where there are no survivors.



I returned from holiday yesterday and my mood has been ridiculously low ever since. In normal circumstances I suppose this would be attributed to the weather, however I don't live in normal circumstances I live with secondary and incurable breast cancer and my mood changes are somewhat complex.

Today is Secondary Breast Cancer Awareness Day. I have just read a really good article written by someone living with this and it made me emotional or should I say more emotional. She talks about the fact that there isn't that much awareness and people  focus on the success stories and for many breast cancer is the "curable" one. Not for us who are living with secondary breast cancer. It was an emotional roller coaster this past week. I was lucky enough to get the chance to spend a week in the sun during my chemo break, but I feel I have paid a high price for this. Firstly, reading the article about the NHS incompetence I have faced was a challenge. This article talked about the things I try not to think about. Namely dying. It talked about my daughter being left without a mum. While I hope that this article can act as a warning to other women who may face similar issues, it left me very unsettled and my usual optimism was depleted. I hope that it returns soon but for the moment I am struggling. Reading this article while I was away was made more difficult because I wasn't on my own territory. This is difficult to explain but it meant that I couldn't combat negativity through my usual means, which are varied but tend to work. The holiday also reminded me of how much the chemo interferes with simple things, just everyday things. It affects my joints and climbing the stairs to my hotel room was more difficult than it should have been. Having very little hair meant more thought had to go into sitting by the pool, i.e I had to be careful to protect my head. I don't know, maybe these sound like trivial things but they left me with a sense of dissatisfaction that I don't normally feel. I spent my week away with my best friend of 25 years and we laughed a lot. We had an alcohol free holiday with chocolate instead and we talked endless nonsense. It reminded me of our time together as teenagers living in Israel. It made me nostalgic and I guess that this has added to my sadness as it reminds me that my life will not take the path that I expected aged 18. Today I have felt more low than perhaps any other time in my cancer journey. I am working  hard to come through this and I am confident that I will. My low mood coincides with Secondary Breast Cancer Awareness Day and so perhaps all is as it should be for today because I am very aware of my secondary breast cancer.

Positivity

"If you don't like something change it; if you can't change it, change the way you think about it"


  Mary Engelbreit


Well I didn't have an appointment at chemo clinic today and it was strange. The thing that struck me was the freedom it offered. This freedom was much more than not having to attend the hospital. I realised that my weeks have been spent curtailed not only by physically being there for the day every Tuesday but actually by the days both leading up to the appointment and following it. It goes a bit like this; Tuesday night is steroid madness so not much sleep is to be had. On a Wednesday I am tired but still bizarrely wired. Thursday is not too bad and I manage to generally get on with things. Friday I am tired and often find myself in bed at 8 o'clock that evening. Saturday and Sunday I am pretty tired and again often in bed early. Monday I find I have more energy but then I am preparing for the next day which is chemo again. I only really thought about how limiting this pattern is today. Don't get me wrong this has been progressive. The chemo has an accumulative effect and as the weeks have worn on this pattern has become more the norm than in the beginning. From this point of view I realise that it is a real relief to have this 3 week break and I am also glad that I will attend every fortnight from now on. Having said all of this, I am grateful that the chemo is working and I will pretty much put up with anything to stay alive. And alive I am.

I wondered what to do with myself today. I chose to do all of the things which have been niggling me, administrative tasks. I managed to tick off the jobs on the list. The biggest thing that I completed today was my application for early retirement. Yes I have decided to take the on-going pension. I think I knew that this would be the ultimate decision. I am determined to survive after all. Still it was quite a difficult thing to do. No one expects to be retiring at 42. I have such a mixture of emotions regarding this. On the one hand I feel cheated and hard done by that my illness has meant that I am no longer fit to work. On the other hand I feel liberated and privileged to be in the position to not have to go to work. Financially there are of course implications, however these are not as far reaching as they could be, due to my diligence in money matters, but changes still have to be made. As with everything else in this predicament I have to take the positive from it. I have to embrace the changes that cancer has brought to my life. By taking an early pension based on ill health the condition is that I can never work again. I have no idea whether or not I will ever feel able to work again, there is a good chance that I will not. However it still feels odd to be in this situation. For all the stress and strain that many of our jobs bring, it is still an integral part of our life. It can give us a sense of who we are. We also have friends at work and basically it's where we are used to going 5 days a week. I have been off work for the best part of 2 years. I only returned last May to then be re-diagnosed in the August. On Friday last week it was exactly a year ago that I stopped work for the second time. I have to say that this year has been different from my first absence. Firstly I have been undergoing treatment in one way or another for this entire time. Secondly I have a different perspective. In my first lot of treatment I was very ill and this didn't help matters, however I also had a different mind set. I have mentioned before that I became pretty depressed after my first lot of treatment as the reality of my situation hit home. I felt isolated and lacked motivation. My second lot of treatment admittedly has left me with much more energy which is a massive help, but it is definitely more than that. Being told that I have incurable cancer has made me appreciate everything more. One of these things is the freedom of not working five days a week. I outlined 20 positive things about my life recently and I have to say that a lot of them were derivative of not going to work. Ultimately, I have no choice in all of this, I have cancer which needs to be treated with chemotherapy regularly in order to keep me alive. This is a fact. What I choose to do with this fact is entirely up to me. I can wallow in self pity and bitch about it or I can take the good from it. I miss certain things about my job but I can also realistically remember the many things not to miss. This is my healthy perspective today. We really don't know what life is going to throw at us but it is in our hands how to deal with it.

The beauty of sharing...

Often, we are too slow to recognize how much and in what ways we can assist each other through sharing knowledge.


Owen Arthur

After children messing around with my laptop I have had to spend some time fixing things, I have now been forced to create a new blog so I updated it a bit. Anyway, it was interesting to read my previous posts and reminded me of how changeable I can feel. I guess that is the nature of the beast.

I have a few things I want to say in this post. Firstly, I had wonderful news at the clinic last week. I knew that my tumours had shrunk and I previously blogged about it. However it was even better news when my consultant told me that the tumours were now so small that it would be difficult to give an accurate size of them. What a feeling. I am currently on a 3 week break and then I will return to clinic for fortnightly chemo. I am very grateful to my doctor for her attention to individual care. This is not a standard procedure but it is one that she thinks will benefit me and so she is willing to try it. She is the kind of person  that we hope they all are, this sadly is not the case.

On that note I would also like to talk a little bit about my care over the past 2 and a bit years. I have already highlighted my negative experiences with the hope of alerting others to incompetence and I blogged about my response to my formal complaint. The response was quite simply inadequate and lets be honest an insult at that. I therefore decided to take it further. I telephoned a number of weeks ago to say that I was not satisfied with the response and could they tell me how to go about taking this to the Ombudsman. Interestingly at this point I was offered an opportunity to meet with someone to sit down and discuss my concerns. I will happily do so. The appointment should be in the next few weeks. In the meantime I have been given the chance to share my story more widely through a national newspaper, and hopefully help others going through or potentially going through this illness. This will basically highlight NHS incompetence and like this blog, it will pass on information for others who may not end up with incurable cancer as a result. I am delighted by this. Speaking at length about my journey for this article was in some ways a bit difficult. We of course talked in practical terms about my life expectancy etc. and in these moments I am reminded of my illness and what I am living with. I generally don't give in to that but of course the fact remains that my life will be cut short. I feel that I live within 2 minds. One sees my situation as manageable and filled with many positive aspects. It is this mind which doesn't believe in statistics, nor give in to them. It lives one day at a time and tries hard to enjoy each one of them. The other prepares for the worst and organises a will and worries about Olivia. Thankfully I tend to spend most of my time in mind number 1, but I have my moments.

On a really positive note I am going for a week of sunshine next weekend as I have a break from chemo. I am truly looking forward to this. In particular I am keen to get some sun as my joints are sore just now. The chemo attacks joints and cold or damp weather affects this further. Living in Scotland and being on lifelong chemo aren't such a great combination.. But hey, my tumours cannot be measured, a bit like my optimism some days, so I won't complain.

Keeping on, keeping on...

We can evade reality, but we cannot evade the consequences of evading reality

Ayn Rand



I normally write about my day at chemo clinic with positive energy. I don't feel like doing this tonight. I'm not in a great place, I had my scan this morning and while this process is nothing particularly noteworthy the outcome is difficult. I also had a tough day watching my lovely friend Carla suffering. She had come to clinic and was due liver scan results. Her most recent one had been good and she had asked about a new treatment called ablation therapy. This targets the tumour through key hole surgery. We had discussed it over coffee last week. We decided that it was a win win situation as if her liver had remained stable it was great news and if there was some growth the hopefully she would be put forward for this new therapy. Out of the blue she was told that her tumours had increased greatly. She was been put straight onto a new chemo. I am praying that it works. She is one of the strongest people I have met on my journey and an inspiration to me. She is 37 and has everything to live for. If anyone can keep fighting it is her. These are the moments that I am reminded of how precarious this life with cancer is. It is changeable and always unknown. It is with this that I will go into my scan result on Tuesday. I guess I am truly living as an optimistic pessimist, hmm does that make me a realist, many a debate surrounding this. Whatever it makes me it gets me through these challenging times. The day  that I was re-diagnosed last August my world fell apart. I knew that I could never afford for that to happen again. As I have said before it is no bad thing to be prepared for the worst but still have hope for the best.

I also had another reality check moment. When having a scan it is standard procedure to be asked when your last period was in case of pregnancy. For the umpteenth time I explained that I was in menopause. The nurse said "oh you're very young for that". I explained that I was on my third lot of chemo. She was embarrassed and apologised that she hadn't read my notes. It was yet another reminder of my predicament as well as the less than perfect care service on offer. But hey, it is what it is. I could go on forever about incompetence but I will save it for the moment.

Money matters...

“Money often costs too much”

Ralph Waldo Emerson


I am having a bad day. I am in the process of applying for early retirement. I could possibly just end with that and most people would understand why I am having a bad day. I am 42! However, to end there would only be a small part of the story. I am facing a real dilemma. It is one that no one can help with. It is one which relies on me and me alone. I have to decide whether I settle for realism or make a leap of faith and continue with optimism.

I have 2 choices available to me. The first is to commute my retirement package and take a large lump sum based on me not being around for all that long. The other is to take a much smaller lump sum and a reasonable pension for as long as I live. Fuck what a quandary. So you see why I can be realistic or optimistic. The difference in capital is about 7 years of me surviving this shit. I pretty much know that asking for a professional opinion would only bring me news that I don't want to hear. It would be news based on statistics and I'm just not willing to be that or indeed fulfil the prophecy. It's all down to me and how I choose to view my situation. I have been going over this for the last few days and it has seriously dragged me down. I felt myself starting to give up. Part of me feels that to take the lump sum is to sign my own death warrant, mentally. I normally wake up and feel good and plan the day but the last 2 days I have had a feeling of being very unsettled when getting out of bed. I suppose my forthcoming scan also plays a part. Overall though I am feeling anxious about this decision. Lets face it, it's no surprise and it's not a decision that anyone wants to be dealing with.

Trying to rationalise finances in the face of terminal cancer is a real pain. In an ideal world finances wouldn't come into such a situation, but they do. It has been shown that women diagnosed with breast cancer who have a full time job face more financial hardship than those who don't work. Some people lose their home, it's awful. McMillan are excellent in their advice and monetary help. Not everyone takes advantage of this and they should. In such times it is also worthwhile applying for Disability Living Allowance, it is your entitlement. Again many people don't do this, especially those who are not familiar with the world of benefits. I applied for DLA during my first diagnosis, I was unsurprisingly refused. I investigated and found that the majority of cancer patients are turned away initially. There is an appeal system, again most people don't bother applying. Often feeling ashamed at asking for help. On principle I did appeal. I was more than happy to go before a panel and state my case. Life was unfair enough. It took 9 months from first applying and ironically I was only days away from my second diagnosis but I won my case and I was given what I was due. As a result I am still receiving a weekly amount, it all helps in times when I am no longer able to earn a wage. These are the things that no one tells you. Life becomes unrecognisable in so many different ways when diagnosed with cancer. Taking practical steps isn't always easy but it is definitely worth it. And so here I am taking more practical steps but struggling with my decision. The bottom line is that I don't want to give in to this illness. I want to be here for as long as possible. However, real life dictates more realistic choices. Life is good right now and it allows me to put off thinking too much about my future and how long I've got. Taking my pension changes that and forces me to look at the facts more closely. I am thinking that I will make my final decision after my scan result. Maybe I'm just burying my head in the sand a while longer. Hey right now I feel that's my prerogative.