Tuesday 27 August 2013

Smile...

Hey, I've got nothing to do today but smile. 

Paul Simon, "Only Living Boy in New York"


It's Tuesday again and I am wide awake as always. I love it, I have thoroughly tidied my house and that sets me up for the week. I have a few things to say tonight about smiling.

Firstly, I am smiling, because yet again I had a nice day at the chemo clinic. I got to share a coffee with my lovely, energetic friend Carla, who has been battling this horrible disease all of her thirties, she is still only 37 and has been through so much. She is a pleasure to know. I also got to see my other chemo clinic friends. I had a chat with my wonderful nurse today and we talked about me staying on my current chemo for longer. This chemo is WORKING, not only is it shrinking my tumours, but more importantly it's working for me and my life. I have very few side effects and I am living a very normal life. I am not bed ridden, I am free to do the things that I want to do and enjoy my life. This is a stark contrast to my first chemo and it is a big improvement on my second. That's the thing about chemo, it works so differently for everyone, and there is no predicting it. I am happy to say that right now I have a chemo regime which is doing all the right things. For this reason it is likely that I will continue with it but on a less regular basis. I will discuss the details with my consultant next week, but she is happy to do this because of my tolerance to it. Sadly I spoke to a woman today for whom this is not the case.  She has had a terrible experience on it and she told me that she is going to stop treatment. She wont live long. She is only a few years older than me. I was devastated to hear her say that she wants to stop. However this is her choice, I don't know how she feels and I respect her decision. It is sad to hear nonetheless. I don't know what I would do if I were experiencing this. I'm not sure how bad it would have to be for me to stop. My consultant talks to me regularly about not wanting to impact upon my quality of life through harsh treatment. I have to say that as a mother I am more concerned with quantity of life. If I am bed ridden and feeling lousy, I can still be there to talk with Olivia and give her support if not much else. That, to my mind is a lot better than not being here at all, but like I said I don't know how I will feel if (or when) that day comes. But for today things are going well and I am smiling.

Another reason I am smiling is that for a couple of days I was not, literally. Chemo has another little surprise gift. It damages your teeth. The chemo itself is detrimental to them through high levels of sugar etc and also the fact that the chemo tends to dry out your mouth means that lack of saliva production leads to your teeth decaying more easily. My first chemo had a terrible effect on my teeth and I was at the dentist constantly having fillings. Several of my front teeth broke and had to be repaired. On Saturday I suffered a broken front tooth which had been damaged originally. I did not feel like smiling. I had to wait until yesterday to have it fixed. It reminded me of the anger I felt during my first treatment. I had asked my dentist about having veneers fitted as I had heard that other chemo patients had had this done. It would cost me approximately £200 per tooth as opposed to £500 done privately. Not cheap but my teeth were falling apart (again literally). She said that she would look into it for me. She came back to me and told me that the NHS were becoming much stricter about their policy on this and that they weren't keen to allow chemo patients this luxury, or necessity depending upon your viewpoint. I was disappointed once more. I was receiving a treatment for a devastating illness which was systematically ruining many parts of my body and the NHS were turning their back. I had spent a fortune having repair after repair and this was not deemed worthy of what they called cosmetic dentistry. Another insult to injury. When my tooth broke again this weekend I decided to re examine my possibilities. I intend to ask for veneers again ( I am now going to be on chemo for the rest of my life) and I fully plan on fighting my case with all that it may take. Who knows if I will win but I am going to try. I would say to anyone who ever has to go through chemo to be aware of this and to fight their corner. I will let you know my outcome. In the meantime I will keep smiling despite my somewhat less than perfect one.

Tuesday 20 August 2013

Tuesday thoughts...

We are continually faced with great opportunities which are cleverly disguised as unsolvable problems.

Margaret Mead


It's Tuesday and so it was chemo clinic today. As always I got more than intravenous drugs from it. Firstly we all had our usual chat while waiting to see the nurse/doctor for bloods to be taken etc. We are all getting closer to the end of our treatment and we agreed that we would miss our Tuesdays, truly. I hope that we all meet up again outwith the clinic and I think that we will. We heard about Yvonne's daughters wedding on Saturday, and how the sun come out after much rain. Norma talked about her struggle to climb the stairs to her flat and we advised her to speak to someone at MacMillan who can advise and help her fight her case to be rehoused. We were also able to offer her some tips on how to do her shopping online as she is struggling with the physical demands of getting to the shops lately. Janette talked about how she had been feeling emotionally and we all listened. This and many other little chats are what makes chemo clinic much more than bearable. I also got the opportunity to learn more about the lovely woman I mentioned in another post, who liked my bid for freedom in the wig/scarf department. When I met her that day I found that she held an attraction, there was something about her. A very dignified woman with a lovely aura. Today I know why I thought this. She was keen for me to know that she has been living with secondary breast cancer for 20 years. Wow. She was my hope today. I am looking forward to talking more to her and finding out more about her journey. These are the things that keep us going.

I also exercised my new philosophy of taking full responsibility for my care today. I have been having quite a lot of pain at the site of my surgery recently. Now it is probably just the aftermath of a fairly big operation and possibly some of the numbness is wearing off and therefore I am feeling things more. However, I can't afford to be complacent this time around and so I asked to be examined. I also ensured that this was put into my notes so that each time that I see someone, the documentation is there and followed up. It's what we need to do unfortunately. It's also really good to be open and honest with experiences with others you meet as these experiences can help. I guess we go back again to my big point in all of this that knowledge is power. I am feeling good tonight, I have a more powerful belief in my future. This whole cancer crap really has enriched my life in the strangest of ways.

Let's talk

"A child seldom needs a good talking to, as a good listening to"

Robert Brault

I visited the Hospice yesterday with Olivia. She goes once a week to speak with a child psychologist about her feelings surrounding my illness and indeed anything else that she wants to talk about. Another huge learning curve for me has been to recognise the effect that cancer has on your loved ones. Family and friends are not spared the ups and downs of the journey, in fact sometimes I fear that it may actually be worse for them. I have recognised how important it is for them to have an outlet. They need to share how they feel about it. They have anger, sadness, hope and despair just the same as the person who has actually been diagnosed. There is a lot of help and support out there for these people and I would strongly recommend that it be accessed. When I was first diagnosed I viewed my situation very much as a transient one. I was not hanging around in this cancer club, I was definitely a flying visitor. As a result I didn't take advantage of all of the help that is available. With hindsight I probably should have. When I was diagnosed with incurable cancer it changed everything and I now see the importance of speaking about your feelings. I now have spoken to qualified people and it has helped. More importantly Olivia has somewhere to speak freely. The Prince and Princess Hospice is a wonderful place and provides all kinds of help and support. For anyone looking to guide their children through the minefield of cancer I would say that it is worth contacting outside agencies. Maggie's have a lot of information on this and MacMillan are excellent for advice. I think that the Hospice is only for terminal patients but I am not sure and so would say to look into it.

The hardest part of diagnosis is the prospect of leaving a child or children behind. I  have worried more about that than anything else. I have also come to recognise that children are very adept at covering things up. They don't always let on how they feel. It can appear that they are coping well but inside they are harbouring all sorts of concerns. In my experience they are best speaking to someone on the outside. Having said this Olivia presents a very balanced front. I truly don't know whether or not she is coping really well or not. I think that she is. I again am not sure if this is partly due to denial. I don't think so.When I was given the news about my lung cancer she asked me where she would live if I died. When I gave her the possibilities she found reasons as to why this would be a problem (practical ones). I assured her that she would be loved and have a good life if I wasn't around. Her answer was that she didn't want to live, full stop, if I wasn't around. This was hard to hear. My way of dealing with the situation was to point out that for the moment I wasn't going anywhere and I would be treated and we would take it one day at a time. As a child she perhaps found this one day at a time philosophy easier to deal with than me. She seemed to accept this and that is how we live. She is a typical 10 year old. She doesn't tread carefully around me or behave in any way different to any other child. She infuriates me and drives me as nuts as any other child does any other parent.Sometimes I am immature and think "how selfish". Really. I have to remind myself that this is good, this is living in the day. Yesterday she announced that she feels ok at the moment and would rather play with her friends after school than attend the hospice. This is what we are going to do and the door is open whenever she may feel the need for it. Maybe the last few  months have been enough of a help. I don't know. All I do know is that there is help and support there if it is needed and I personally would recommend that any one in a similar situation to me look into it.

Sunday 18 August 2013

More wrinkles please...


In youth we learn; in age we understand.

Marie von Ebner-Eschenbach

I turned 42 today. I felt I should give it a wee mention. In 2011 I was awaiting my 40th birthday with a strange feeling. I remember being quite fixated on the idea of it. I discussed it with my friend who had turned 40 the previous year. We pondered the whole notion of what we decided was the year that you realised that statistically you had lived half of your life (well statistically depending upon where you live, the life expectancy post code lottery and all that). I wasn't sure whether or not I was buying into a culture obsessed with age or if I was just feeling more mortal, having lived half my life. Either way, I look back on it and laugh, kind of. How arrogantly, beautifully, optimistic to expect to live to 80 or thereabout. Today I celebrate my birthday with a very different perspective. I now WANT to be old. I want wrinkles (more wrinkles), I want all of the things that modern society dread and do anything to avoid. More importantly I want to see my daughter become an adult, I want to see grandchildren and everything else that we take for granted. The reality is that I most probably won't. Despite this I get to enjoy turning 42. I'm not burdened anymore with the anxiety that age brings to many. It's great. Each birthday that I have from now in will be a blessing, a bonus. I shared a post on facebook earlier which many will be familiar with about people wanting things (more money etc) when a cancer patient wants basically not to have cancer. I believe in the sentiment behind it and thus shared it, however I also believe that everything is relative. Just because you don't have cancer doesn't mean your worries and issues aren't a big deal to you. On the other hand wishing our lives away wanting material gain and striving for the perfect body or whatever it may be, does now strike me as a bit of a waste of time. Being caught up in the fear of ageing is to my mind the biggest waste of time. Age is experience, it's wisdom, it's empathy, it's compassion it's "getting it". Without people around us who have aged where would we be, who would guide us? I would love to be able to guide others and in particular my own child, for many years to come. If this means lines and sags and bags then fine. I will embrace them because every one of those lines will be testament to having lived. I really want to live.

Wednesday 7 August 2013

Assume nothing





Answer the  phone...

Lesley Graham

As writing this blog is about sharing my experiences good and bad and hopefully giving others the opportunity to be more in control of their illness/life, I thought I should share about  my recent correspondence with the NHS. As I have mentioned in previous posts I feel that I was let down pretty badly by the system on a number of occasions. I can't change what has happened to me but I can potentially stop it from happening to others. I formally lodged a complaint a couple of months ago about the fact that I was never given a follow up appointment after my radiotherapy ended and that I was never able to contact my Breast Care Specialist nurse over a period of four months when I had concerns over what was happening to my breast. We all know the outcome of that.

In my letter I documented that I made numerous attempts to reach this member of staff and indeed had been assured by another person working at the clinic that my message had been passed on in one instance (I firmly believe this to be the case for what it's worth). My reply to all of this is thus. There is no recollection of this exchange from the member of staff cited. I cannot prove it happened. The Breast Specialist Nurse has no knowledge of any of my attempts to contact her and would have acted accordingly had she known. I cannot prove this is not the case. My lack of follow up appointment was due to a "system error" and they apologise for this. System error read "no ones's fault". At the same time I am told that I essentially failed in that I did not contact other people ( list of names was provided) mainly consultants. So that's that then. Moral of story. Take nothing for granted where your care is concerned. If a phone call is unanswered go to the top. Bug them. Turn up and lie on the floor if that's what it takes. Write things down document dates etc. Sadly it would seem that the onus is on us to ensure that we are treated properly. I have to live with my regrets, don't make such regrets yours one day. After all sorry won't cure my cancer.

Tuesday 6 August 2013

Let there be light

In the broken places the light shines through

Leonard Cohen


At the hospital today I bumped into my very first breast cancer nurse and we caught up on the latest events. In the midst of this I found myself telling her that despite everything I was in a much better place mentally, emotionally and psychologically than I think that I was before cancer. I'm not convinced that she believed me. I wanted to write about it to see if I believed myself.

We all go through life listening but not necessarily hearing about life changing experiences. We read of people who have had near death situations and people who have conquered life threatening illnesses and come out the other end. I had listened many times to such accounts but I had never truly heard them. I didn't understand on any level what it meant to have a fresh perspective or to see life differently, I think I do now.

The last two years have undoubtedly been hard. The strain and stress of this illness has taken its toll in various ways. However, it is too easy to look only at the negatives and to feel angry and resentful at the hand one has been dealt. What is more difficult is to take the good, the positive. If I had been asked 2 years ago to find positives in my current situation I would have failed the test, I could not have imagined this journey being anything more than a really unfair one. In many ways I still see this. The way my situation stands at the moment I will never be cured, I pretty much know what I am going to die of. I will more than likely spend what time I have either going through chemo or waiting on scan results, or both. That is not easy. It's not the life that I had thought that I would live. These are harsh realities. I have had to give up my job for the majority of these past 2 years, I have altered my life style (only recently, and I wish I had done it sooner) and I essentially live a different kind of life. But here's the thing; it's different, it's not necessarily worse, it's just different and dare I say it, maybe better. No, actually, better IS the right word. I have a new perspective.

I remember an adult saying to me when I was ten years old " be careful not to wish your life away". I didn't heed theses words but I clearly understood the sentiment as I remember it so vividly. I obviously didn't like this aspect of me but I didn't know how to change it. Today I'm learning. I have spent years not only looking forward to future events and thus utterly ignoring any good in the current moment, but also worrying about the future. Not tomorrow but years away. Literally stressing over the ever increasing retirement age and imagining turning up to school in my 60's or 70's. Now we all project a little about such things but I did it a LOT. It's a bitter sweet pill to now be freed of this with the semi safe knowledge that I won't see my 60's or 70's but it's freeing. Perhaps I am able to swallow the pill with relative ease because as I have said before we humans are brilliant at finding hope in apparently hopeless situations. I wake up every day with the belief that they may well come up with a better solution to my problem. I have faith that with time and research my seemingly incurable cancer will be cured. Its not impossible. In the meantime I live in the day (or try to as best I can).
I suspect that a great many people facing cancer find a lot of things in their journey that they would not have believed possible. I personally have met some amazing people through it and have made new friends whom I would not have met otherwise. Just the other day a good friend of mine who has been coming to my chemo appointments with me lately, commented on how much laughter there is in the chemo clinic. It's true. He said that this had surprised him and wasn't something that he would ever have thought to be the case. Everyone is rooting for one another and while we all have a wee moan about our latest cancer disaster; they couldn't find a vein for bloods, the scan took forever to come back, the side effects are getting worse, we feel a bit shit etc etc, we do also (mostly) laugh. I am on weekly chemo and so I attend on a Tuesday along with other women in pretty much the same boat as me. Its the metastatic clinic and we're all a bit screwed really but we have coffee, and lunch and then more coffee (its a long day) together and so we know each other pretty well. We invest more in one another than we would in virtually any other circumstance. We leave there with a restored faith in humanity (and poison in our bodies but that's a technicality).

This is fresh perspective. Its embracing change and accepting that you don't have control over your life but you do have control over how you live it. All of the clichés come back to me with a vengeance, " you only get one life" "you never know what's around the corner". I  listened to these clichés in the past but I didn't hear them. I'm really not sure if it is possible to hear them without the experience I have had or if this is just a part of my character failings, I would like to think that for many, living for the day is a reality not only realised through adverse circumstances. For me it took something like cancer to get it. That's ok it really is. It's why I say that, in a way I am thankful for my journey. In an ideal world I would have come to this conclusion all on my own and I would be perfectly healthy today. It's not the case, that's not how it happened and it's ok. Being forced not to take life for granted for me is a gift. I did take it for granted and I completely lost sight of the here and now within it. I now want to try new things. I want to be proactive and not reactive. I would like to think that I could learn to complain less and do more. I am on that road. I don't know about anyone else, but I believe me.
Living in the day is not something that I have ever been good at. Since I can remember I was looking at what was going to happen next week, month, year. I wasn't able to enjoy what was happening right now. By the same token I would worry about what was going to happen next year or in ten years. The ever increasing age of retirement was a regular concern for me. Really! I could say that I no longer have this luxury. OR I could say that I no longer have this limitation. I am free of it. I believe that the latter is true. Thinking constantly about the future whether near or far, only limits your ability to live in the day. I remember an adult saying to me as a 10 year old "be careful or you will wish your life away". I didn't necessarily heed these words but I do clearly remember them and so I obviously understood the sentiment but didn't know how to act upon it. I'm now learning though. I'm learning to live for today.