Wednesday 18 September 2013

Keeping on, keeping on...

W 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.

Monday 16 September 2013

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.

Wednesday 11 September 2013

The never ending story of scan fear

In the case of news, we should always wait for the sacrament of confirmation.

Voltaire

Well the letter arrived today, I always recognise the envelopes unfortunately. I have a scan on Tuesday the 17th September. Its very quick. I am assuming that my Oncologist wants to see what's happening in my lung as she will have to justify her decision to keep me on this chemo. I am praying that she finds such justification.

My biggest fear, as always is that I go into the room of doom for the results and am told that they have now found other tumours elsewhere. Metastatic cancer tends to be alphabetic in its commonly found spread areas; bone, brain, liver, lung. I guess the odds are bone then. Let's hope not. Of course it's no big surprise that my currently diagnosed and only spread is last on the list, I hope to keep it that way. I am going to have to really focus on practising this living in the day philosophy. I cannot afford to spend the next 13 days in a state of fear, it doesn't change the outcome but instead robs me of time, time which I need to make the most of. For this reason I am going to make a plan for every day. Whether it is banal stuff like the shopping or more exciting things like booking a holiday for my 3 week chemo break. I must do this. I must have something to keep me occupied. You would think that the scans would get easier, but the reality is that they don't. Thus it is crucial to find little tricks to keep you sane. My friend is finishing work for a while in a couple of days and we are going to look into doing some yoga. This is now even more important to do over the next couple of weeks. I have a class in mind so I will make it happen. That's all I can do, keep busy and try not to imagine the worst. I cannot give in to my crazy mind conjuring up all kinds of awful outcomes. Whatever will be will be. Please let it be good.

Tuesday 10 September 2013

One day at a time...

"There are lies, damned lies and statistics"





Mark Twain (thought to derive from Benjamin Disraeli)


Well it was chemo clinic today and as always it was eventful. Firstly my nurse asked me if I wanted to have a chat with my oncologist regarding my complaint about my care following my initial treatment. I already outlined my response to this complaint and suffice to say that I was not satisfied with it (polite way of putting it). I have subsequently contacted the complaints department and stated that I would like to take my case further. The complaints department therefore formally offered me an appointment to sit down and discuss my concerns with someone. They also let my oncologist know about this, I assume, hence her invitation to talk  to her. I will say again that my oncologist has been nothing but professional these last 2 years and my issues lie elsewhere. I have decided to take up the offer of meeting with someone at the complaints department as this is hopefully another step in the direction of addressing my concerns head on and hopefully preventing someone else from going through my experience. I will update the blog accordingly.

This incident once again coincided with another happening today. Someone told me that my friend Janette had appeared upset after her meeting downstairs with the Oncologist. I was concerned for her. When I saw her she told me that the doctor had said to her that it was likely that when she finished chemo the cancer would return(or start growing again) within six months to a year. Janette is in exactly the same boat ( a very fucking leaky one) as me, she is triple negative with metastatic tumours. I therefore felt her devastation. I have not personally had those words spoken to me but perhaps they have been said in other ways. It certainly goes a long way to explaining why they are keeping me on it. I wasn't shocked lets say that, but as Janette pointed out hearing these words out loud is hard to take. The chemo leaves most people wrecked and praying for the end of the 18 week regime. To be told that it has such a short window of remission is to say the least disheartening. This is the harsh reality of triple negative breast cancer and it also reinforces the notion that women should get all of the facts about their cancer and demand to be heard when they feel that something is not right. Therefore coming straight on the back of my chat with my nurse it strengthened my determination to keep going with my complaint, things happen for a reason it would seem. So I came home today and after my initial chemo induced coma, I got straight online looking to arm myself with a little power through knowledge. I found a mixture of information. The one that stood out was on an information website on this type of cancer and the prognosis. It stated that "the median life expectancy for women with triple negative metastatic breast cancer is one year". Well I have outlived this statistic already. I choose not to believe statistics as I am an individual. I am me. I have a very positive attitude these days and my journey will be as individual as I am. As a Modern Studies teacher I spent many a lesson explaining to my pupils to be very wary of statistics. I am practising what I preached. I wanted to post some statements from women on various forums who are aboard the seemingly sinking ship.

" I feel as though I am living on borrowed time"
" I hate this evil, clever cancer"
"Every time I look up anything on triple negative cancer it fills me with gloom about how aggressive and  difficult to treat it is"
"The trip neg is a stinker...sneaky, unknown, and criminal.
"On July 24, 2007 I was declared NED. On Aug 15 (my 41st b-day) I had a local recurrence...on Aug 24, I was told the cancer has spread to my bones and liver.I really can't understand how all this could happen in a month...total elation, to total devastation."
"I am triple negative and I  have no intention of  only living for 12 months"

I choose to go with the last statement. Statistics shamistics. I also looked up various sites on new developments on TNBC. There are many. It is encouraging and it gives me hope. Every day is a new day in the cancer research world and this particular type of cancer has been recognised recently for what it is; deadly and hard to understand and under researched. For this reason I believe that new research will overcome this. I am hopeful that Janette and I will share many more chats at clinic when the time comes for us to go onto a new chemo. In the meantime I have to live in the day. One day at a time and all that. Here's to that Janette.





Thursday 5 September 2013

Giving in to it...

"Fill what's empty, empty what's full, and have a scratch for every itch"

Alice Roosevelt Longworth


After my emotional day/evening I was glad to go to sleep last night. I was therefore annoyed to be wakened during the night with an insatiable itch around my mastectomy scar. It was an itch which came from the inside and just couldn't be scratched. I ended up getting out of bed and going downstairs for a while. This left me pretty tired this morning but it got me thinking.

My emotions yesterday were an itch which needed to be scratched, but like my scar tissue they were hard to access. I realised that we all need to cry sometimes. It is naturally healing and it soothes. I haven't done too much crying of late. I quit alcohol completely some time ago. This has given me wonderful health benefits of that there is no doubt. However I suppose like for many, alcohol loosened my inhibitions and sometimes allowed me to cry. To be fair it was making me cry far too much in the end but it had been a release at times. I needed a little cry today. I have listened to some of my favourite songs both happy and a bit sad and I have shed a few tears. It felt good. It was a release. I didn't wallow or get carried away with it. I just allowed some of my emotions to be released through tears. I scratched the itch. We cant change what is happening to us when living with cancer and sometimes we wont feel like smiling through it. It's ok to give in to this, in fact it's necessary. I'm now ready for a walk in the park with Oscar. Its a gorgeous day and I'm looking forward to basking in what remains of the summer sunshine without worrying too much about its imminent departure.

Wednesday 4 September 2013

Some days are better than others

Some days you wake up with her complaining,
some sunny days you wish it was raining,
some days are sulky, some days have a grin
And some days have bouncers and won't let you in

U2 - Some Days Are Better Than Others


Moods are a funny thing  and can change like the weather. I had a very upbeat day yesterday and I came up with lots of reasons to be happy. I meant every one of them. Yet, today I woke up with an unsettling and unshakeable feeling of ennui. I have rationalised it, I think. As the day wore on and the sun broke through the clouds my mood became increasingly restless and a little bit sad. I believe that this was due to having spent some of my day yesterday discussing what I didn't ever think I would be discussing at the age of 42; how best to keep me alive. Todays latter glorious weather I believe made me sad because as it is late summer I was acutely aware of the fact that these sunny afternoons were coming to an end. I love summer and the sun. In late summer I always sit out whenever possible. I do this with a hint of melancholy at the best of times, but normally I tell myself that it's OK as summer will be here again. I think this is where I  stumbled today. I asked myself  if summer really would be here again for me. I tried not to enter into this dangerous zone but I did. I let my mind go the dark side for a while. I found myself thinking ridiculous thoughts like, what will I do with all of my lovely summer clothes if I don't live until next summer. It's good to know that I can still be shallow in profound moments! I also let my mind wander into the awful "how will I cope on my death bed" scenario. None of it good. I was humbled today and reminded that living with incurable cancer is not easy and it's wholly unpredictable. It takes a lot sometimes to stand up to it and not be beaten by it. My blogs are mainly positive and this is an honest account at all times, but today I gave in to a wee bit of sadness and I thought that I would share it. Tomorrow is another day.

Tuesday 3 September 2013

Living...

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

Douglas Adams





It was confirmed today that I will remain on this chemo indefinitely. This, of course, is dependent upon a "committee" agreeing to this. Now it's not supposed to be about money, (yeah right) but the good news is that this chemo is relatively cheap so I'm hopeful, if not cynically so, that they will agree to my consultants recommendation. Oh and I'm sure that they will note that it is keeping me alive with very few harmful side effects.

I have a mixture of feelings about this decision. Firstly, I am happy and truly grateful that a chemo is doing the job and leaving me with a healthy quality of life. Apart from hair loss and some fatigue, I am living a full life. I walk the dog, I make the dinner, I meet friends for coffee and I'm feeling good most of the time. On the other hand, I had been looking forward to the end of my 18 week sessions. The 24th of September was earmarked. I suppose I was glad to be coming off a drug that is systematically wearing my bone marrow down. I was also told today that I have a delicate bone marrow anyway! Of course I do! I was also looking forward to looking normal again, I have now lost my eyebrows and most of my eyelashes. I do have some hair regrowth on my head but not much. However, it is a small price to pay to be alive. I am embracing my new philosophy of living in the day and taking it one day at  a time. I have therefore come up with a list of all of the good things in my life right now, I thought I would share them. Maybe I need to strengthen my own  belief. My goal is 20.

  1.  As I no longer go to work I don't get up at stupid o'clock.
  2.  When I do get up I enjoy my morning coffee free from mentally planning my inevitably stressful day.
  3.  I walk the dog once I have dropped O at school. I love the dog walking life and have met some new friends. Autumn is coming and I love this season. I am looking forward to park walks in the leaves.
  4. I get to plan my days the way that I want to apart from Tuesdays which is chemo clinic, but I enjoy my socialising there.
  5. As I have the time, I enjoy dinner time more and actually get to sit down with my daughter and share the evening meal.
  6. I have recently been in touch with several old friends. We have met for coffee and it has been lovely. I would never have done this had I still been living my old life.
  7. I generally see much more of my friends as I am no longer slotting them in to the holiday periods.
  8. Weekends are not spent recovering from the stressful week. They are spent doing the things that I want to do.
  9. I read more.
  10. My house is tidier (sometimes)
  11. I speak to my mum more.
  12. I have gone back to listening to music more regularly. I have a re kindled love for my ipod.
  13. I plan on re reading some of my favourite books.
  14. I have patience to do homework with O.
  15. I get to go to O's school things, most recent being a Titanic showcase, it was good.
  16. I go food shopping without resentment as I am not rushing to slot it into my working day, therefore saving money as I no longer just pick things up and throw them in the trolley.
  17. I am looking into doing some courses that I have been talking about doing for years, and I mean YEARS.
  18. I actually water my plants regularly.
  19. I choose to do things which enhance my mood, I am proactive not reactive.
  20. I write THIS.
That was so easy. I could go on, but I fear I may start to sound smug.