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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

I'm not having a bad hair day

Feeling healthy and feeling good about yourself is not a luxury it's a necessity

Eleanor Roosevelt


I decided after my good news on Monday to follow my own advice from way back in the first chemo and ditch the head covering, in my case the scarves.

I have found it interesting as a genuinely interested person to examine the social norms that surround being a chemo patient, well that is more precisely being a female chemo patient. I am not going to start out with any lies. When I was first told back in August 2011 that I would need chemo and that I would definitely lose my hair very quickly, I cried. I cried in the doctors consultation room and I cried down the phone to anyone who would listen, glass of wine in hand. I am vain, I am a victim of our societies norms. Certain phrases spring to mind; a woman's crowning glory is her hair, being the main one. Now to qualify, I didn't have particularly great hair, it was thinner with age and pregnancy. It was a crappy texture, I honestly looked like Eddie Van Halen (Russell will happily testify to this) before I used the GHD's and yes I moaned about it really quite a lot. BUT it was hair for good or bad, it was hair. It was an alien concept to not have any ( to, em, moan about). These are natural first reactions in a society which increasingly values looks and beauty above all else. There are papers being written about how damaging this is at this very moment. People who challenge what is wrong in our society and in particular learned feminists, question constantly why women in particular still face a constant battle with being judged above all else on their physical attributes. I  read these articles and question as much as the next person and yet my tears had come quickly at the thought of hair loss. Yes I am a victim of society. However with the right attitude towards the reality of chemo and hair loss this could be less of a blow. This is a health issue first and foremost, this is potentially life saving and should at least escape from the crippling fear foisted upon us in normal, daily life of not looking "good enough".

 For this reason I find it amazing that one of the very first things that you are counselled in is your imminent hair loss. Prior to chemo you have a consultation to take you through the main aspects of what you are about to face. Hair loss is very near the top of the list. Your NHS wig voucher is doled out early on in the session. Now I get it, I do. Obviously it causes a great deal of stress for very many women. However, it's a funny thing because it's really a bit of a chicken and egg scenario. The higher the priority they make it the more important it becomes to the patient, or do they make it so because it ultimately is the patients priority? Who knows. Lets face it probably a bit of both. Anyway you look at it it's all a bit crap. It was only some time later that this would play on my mind. When you are told that your body was hours away from closing down and going into a septicaemic coma, the whole hair loss issue becomes quite meaningless. Indeed when your life becomes confined to a bed for 18 days out of 21 it is inconsequential. These were my experiences. Such experiences made me think more about this societal stigma of women and hair loss when chemo realistically has so much worse to offer. When I stopped chemo my hair came back extremely quickly and I stopped wearing a scarf. I will mention that I never wore my wig as this felt far more ludicrous to me than being bald. My experience at chemo clinics (and in general public places) was that most women just didn't look right with their wigs. For example many women who were considerably older had wigs on their heads which would be best suited to a teenage girl and even then wouldn't look that natural. The main reason of course is that NHS wig vouchers don't stretch to high end wigs which do look natural and good. This I found quite sad, these women were desperate to appear normal and yet the opposite was true. I had been house bound for most of my chemo and so didn't really encounter the day to day struggle with the annoying scarf ritual. Once I was up and about again I realised that it was a real bloody inconvenience and so, like I said, I stopped wearing it with just a little hair growth. I remember my daughter being slightly horrified by this. She was 8 at the time, so young and yet so entrenched in our societal stigmas. Outings were interesting and yes people did stare. The beauty was in the stares of the very young children. They didn't quickly look away. They are the innocent they look without embarrassment at what they find unusual. What, essentially is not their norm. This I truly didn't mind, and actually was amused by. I remember saying at the time that I felt that it was very wrong that women who were going through arguably one of the worst times of their lives were further compromised by this whole wig/scarf versus bald situation. In truth it was a very short window of time in which I chose to go bald. My hair was deemed socially acceptable in weeks, by that I mean people stopped staring. This whole thing resonated with me though and I said that it was a shame that this was how it was. I also said that should there, god forbid, ever be another chemo for me then I would address this issue from the start.

Well, as we all know I didn't' have to wait long to be put to the test. Hands up I failed. I lost my hair just over 10 weeks ago and have been wearing scarves since then. I have many, nice ones at that. I have a scarf to match most outfits. I am very clothes conscious. However it is all a bit of a pain. I don't like feeling forced to comply with this tradition. My real question is this, is it the case that part of the reason that women do buy into it, is because we want to save  others from embarrassment? It's true that people feel uncomfortable with it. I remember answering the door many times to strangers and them not knowing where to look. I felt strangely apologetic. Yes "I'm sorry for making you feel uncomfortable for my shit life right now" eh? I don't even remotely blame them. I blame society. Whilst we have stopped using strange euphemisms when referring to cancer, we still feel uncomfortable with bald women and in turn of course bald women feel uncomfortable with themselves. So yesterday I went out without doing the appropriate thing and covering my head. It felt very liberating. I was at chemo clinic and the nicest thing happened. An older lady who I have seen around approached me to say how happy she was to see me without a scarf and how this should encourage others to feel more confident. She was about to lose her hair for the fourth time and she only wished that she could do the same but she felt that she was too old( I was wondering if she had poor vision as I've got a few lines myself).  I told her that I didn't think that this was the case and maybe my words will encourage her to ditch the wig when the time comes. Who knows? All I know is that I am putting my money where my mouth is and welcoming the stares, as it is a statement. It's the old saying that by changing nothing, nothing changes.  I wholeheartedly disagree with the notion that women should be psychologically pushed into covering up. For women who truly want to do this then that's equally fine. But it should be about individual free choice. I may well don a scarf again, as sometimes they look quite nice and I get to relive the bandana 80's. However it will be my decision if and when to do so. Small steps and all that.

Good news does come around

No problem can withstand the assault of sustained thinking.

- Voltaire

Yesterday was a very  big day. It was 19 days since I had been for my scan and each and every hour of those days passed painfully slowly. Even whilst sleeping the pain of waiting for the news was felt in every muscle of my body. I said before that the mind is a powerful thing. It can be amazingly powerful in a positive, healing way. Equally it can be deceptive and cruel and lead to all sorts of damage. My mind has caused mayhem these last couple of weeks. As time went on I became paralysed with fear. My mind took me to terrible places and my body suffered massively. Chemo does a lot of harm to your body and all of my pains are no doubt caused by it. However the last weeks I have been unable to rationalise this and instead every pain feeds a new worry. My pains are also, I'm sure, caused by my stress. I have never doubted the ability of stress to wreak havoc on the physical well being. I have always known this, the year long backache which always eases up a few weeks into the 7 week summer holiday for example, but never known how to stop it, to act upon it. This is something that I am determined to find out more about. My meditation class last week was really good and I intend to go further with this. Anyway, I did what any person who is consumed with fear does and I set all kinds of stumbling blocks in the way of my news. If I don't get a phone call by 4pm I am not answering the phone after that, I don't want to know bad news at that time. If they don't leave a message I will just leave it as it can only be bad news etc etc . The hospital did call (eventually) on Friday morning. Both phones. I didn't make it to the phone (or did I tell myself that?) and no message was left. I waited all day for the phone to ring again. It didn't. By half past 3 I decided that I couldn't take bad news over the weekend with no doctor to speak to. I left it. I then got to sunday night and my mind had completely done a job on me. I had all sorts of scenarios going on in my head, and pain, I had a lot of pain. The mental anguish becomes the physical malady. This is living with cancer and it's not good. Monday morning came and I was fully intending to make the dreaded phone call first thing. Of course I found a million reasons not to. By the afternoon a very good friend finally said, to paraphrase, "just fucking do it Lesley", and I did. 19 days of fear and anguish were blown out. My scan result was showing that the tumours were reacting to the chemo. My largest tumour had reduced by more than 50 per cent. WOW. This was the first time in over 2 years that I had been the recipient of uncompromised good news. I could have known this last Thursday. The thing to be mindful of is that you are one of many cancer patients and the people on the other end of the phone are not worrying like you are. They are BUSY. Therefore it is really up to you to push for the information. Fear is sometimes all that stands between you and an answer that can change everything from black to wonderful white. This is living with cancer. Conversely fear can also be realised with one short phone call, lets be honest, but again bad news is still better than no news. Bad news gives you something to work with. I am delighted to say that this is not my situation today, but it no doubt will be sometime in the future. This is why I have to seriously work on my mind. I will keep you posted

Scan fear...

The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.

William Arthur Ward

 

 

 

I have in the last couple of weeks outlined my 2 year journey with breast cancer. Obviously I have been fairly concise,(believe me there was a lot more I could have said) but I'm confident that readers have got the picture. It's not as straight forward and "curable" as recent media hype would have us believe. It's complex and dangerous and yes it kills. For these reasons women should be acutely aware of what they may be facing should they end up with this horrible illness. With this awareness they can "adjust the sails".

 

 

 To come completely up to date this post will look at what's been happening in the last few months.

After my recovery from surgery I went back for another scan in March. Part of me ( a very small part of me) was wondering if there was any chance that these nodules could be benign. There had been no biopsy done and they had remained the same size during chemo whilst the breast tumour had grown! I know that many people close to me were wondering( and hoping for) the same thing. There is nothing whatsoever wrong with hope but preparation for reality not being what you wanted is equally important. I was fully prepared for such reality. I found out in April that my lung tumours had grown and that there were new ones. So it was time to talk more chemo. It was decided that I should go onto weekly doses of a chemo called paclitaxel. It was thought best to go for weekly doses as the doctor didn't think that my body would cope with larger doses every 3 weeks. So far so good. I have been very active and have felt really good in the last couple of months. My white blood count has not always recovered and I have missed a few but on the whole, if this is chemo then I can live with it. I am a bit bored with the head scarves but again I can deal with it.

I am almost half way through the 18 week regime and am now awaiting the mid way scan results. I had my scan 12 days ago and am most likely getting the results tomorrow. The best outcome will be shrinkage and the worst will be growth and spread. I would love to say that I am living the words of F Scott Fitzgerald and Buddha but it would be a lie. I am a wreck. For people who go through these scans it is probably the worst time of their lives. The rational side of the brain copes, the other bit is a minefield. In the last few days I have self diagnosed multiple tumours in all parts of my body and I have the pains to back it up. The mind is a powerful thing. I found out today that a woman I have become friends with at the chemo clinic and who has the same type of cancer as me, had a very positive scan result. Great news. It should give me strength and hope. In my rational mind it does. Janette is receiving the same drug as me for the same type of cancer and it is working. It may well be working for me. But today I am in not in possession of rational thought. Today I am crazy and lacking in intelligence. Today my head tells me that Janette got all the good news, there's only bad news left for me. This is the power of the mind and this is the reality of living with cancer. My next step on this journey is to find ways of coping with these days. They will be here again. I am starting a meditation class on Wednesday and I am intending to explore other avenues which could preserve my sanity (and energy) in the future. These are the things that are not explained to you when you are diagnosed. These are the things that we need the most help with. I will be sharing my findings and I am hopeful that there are measures that I can take which will help me and then, through this blog help others.

SO, just in case Janette didn't really get ALL the good news, keep your fingers crossed for me.

Living with cancer

The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.
       - Buddha



Coming to terms with having incurable cancer was pretty hard. I doubt that will come as a surprise. I was put forward for a clinical trial. As I have triple negative breast cancer, this means that drugs such as Herceptin and Tamoxifen don't work. Researchers are now looking more closely at triple negative cancer. As it affects roughly only 15% of breast cancer sufferers it has not been as well researched as others, which is understandable. For women who may be diagnosed with this rarer form of breast cancer I would recommend finding out as much as you can about it and using your knowledge to take more control of your illness. I pray that I can survive long enough for them to come up with a wonder drug for my type of cancer. In the meantime I will continue to take chemo. Anyway, I was put onto Carboplatin, a chemo commonly used to treat primary lung cancer but recently discovered to work effectively on secondary or metastatic triple negative lung cancer. I was willing to try anything. The other bonus was that this chemo didn't result in hair loss. The side effects generally seemed a lot less brutal than my first chemo. I was fairly open minded. Despite having a significant tumour in my breast the main priority was dealing with the lung lesions. I started my second chemo in late October. As I had been told, it was indeed less debilitating. I had side effects but they were tolerable. The only problem was that my white blood cell count and my platelets were slow to recover and my 3 weekly cycles were regularly delayed. This of course caused stress. After 3 treatments I was due a scan to see how effective the treatments were. I went for my scan on Christmas eve. I then waited and worried until Jan 3rd for the results. I tried to take on board my specialist nurses advice, which was to live one day at a time. When she first said this back in October I remember thinking that I had no idea of how to do that. I am now better at it and believe it or not it is actually a very liberating feeling and definitely something that we could all benefit from. However, I would be lying to say that I don't worry prior to scan results. On the day of the results I was tired from lack of sleep and my mind took me to all sorts of dark places. I was being seen at 2 pm and it made for a very long day. Waiting to be called was painful and following the doctor into the consultation room felt like a very long walk. As always I was trying to discern the news from her body language. She didn't beat about the bush and basically told me that the news was not the best. I felt sick. In the space of 5 seconds I had myself dead and buried. I'm sure I will go through such emotions again. The news was not as bad as I had mentally prepared for. Unusually, the scan had shown that my lung lesions had not changed (this is considered good, shrinkage even better) however, the tumour in my breast had grown. While this was not a common finding, it was not unheard of. Strange as it may sound I was pretty happy with this news. The doctor advised that we put the chemo on hold and go for surgery to remove my breast. She booked me in to see my original surgeon the following week. I was very keen to have my breast removed. I saw the surgeon and she agreed that this was the best course of action. She was also keen to remove all of my axillary lymph nodes. To explain this, basically breast cancer cells can break off and spread to the lymph nodes in the armpit. This of course increases the chances of the cancer finding its way to other parts of the body. When undergoing breast surgery  a sample of lymph nodes will be taken (there are approx. 20 - 30) and examined for disease. As far as I know should there be disease detected then the entire axilla is removed. My sample had come back clear during my initial lumpectomy and therefore this hadn't been necessary. When the doctor recommended removing the lot this time around as I said, I was less accepting of everything in the medical world and challenged this. I asked her to give me information on what complications this could bring. She told me that there was a one in five chance of developing lymphedema. Here is a medical definition of lymphedema;
Lymphedema  involves blockage of the lymph vessels, with a resulting accumulation of lymphatic fluid in the interstitial tissues of the body. The lymphatic system consists of lymph vessels and lymph nodes throughout the body. The lymph vessels collect lymphatic fluid, which consists of protein, water, fats, and wastes from cells. The lymph vessels transport the fluid to the lymph nodes, where waste materials and foreign materials are filtered out from the fluid. The fluid is then returned to the blood. When the vessels are damaged or missing, the lymph fluid cannot move freely throughout the system but accumulates. This accumulation of fluid results in abnormal swelling of the arm(s) or leg(s), and occasionally swelling in other parts of the body.

Lymphedema is a very serious condition. There is no cure for lymphedema and once it develops, it can be a long-term, uncomfortable, and sometimes painful condition requiring daily treatment. When lymphedema is not treated, the protein-rich fluid continues to accumulate, leading to even more swelling and hardening (referred to as fibrosis) of the tissues. This fluid is a good culture medium for bacteria, thus resulting in reoccurring infections when there are injuries to the skin, decrease or loss of functioning of the affected limbs, and skin breakdown. Infections, referred to lymphangitis, can affect the connective tissue under the skin. Repeated infections may result in scarring, which in turn makes the tissue susceptible to more swelling and infection. Over time, these infections result in tissue hardening (i.e., fibrosis), which is a characteristic of advanced chronic lymphedema. In very severe cases, untreated lymphedema may even result in a rare form of lymphatic cancer called lymphangiosarcoma.

 

Hmm I wasn't too keen on this!

Given the stage in my journey I sought a second and third opinion. I had not been particularly lucky with the news so far and was determined to be more in control this time around. What if there was no disease in my lymph nodes and I ended up with lymphedema. Two other doctors agreed with me that during surgery only sample nodes should be taken. Should these show disease then further surgery could be done and so I was decided. I underwent a mastectomy in January and again the surgery was straightforward. I was discharged the following morning and recovered well. 10 days later I returned to hospital to have a check up and get the results of the lymph node biopsy. I was again worried. For the first time in19 months I was actually given good news. There was no disease in the lymph nodes which had been removed. Well how about that. Taking a bit of control over my illness had paid off, it was one less potential health problem to deal with. Ask questions, make decisions, it's YOUR body.

Rolling with the punches

The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function. One should, for example, be able to see that things are hopeless and yet be determined to make them otherwise.
F. Scott Fitzgerald



No one had to speak, the news was delivered through silence. In fact it was me who spoke first. For some reason I was stunned. While I had been worried and fearful of the worst I was still utterly taken aback by the fact that I was about to face all of this shit again. How could this be? The nurse tried to comfort this inconsolable hysterical woman and  I remember saying through my tears that I couldn't go through another chemo. I was only just psychologically coming out of the last one. I remember swearing a lot and incoherently shouting about being let down and shit care etc etc etc. It's a bit of a blur. My lasting memory is of ruining a really nice scarf with tears and snotters. It lay in my car for months and every time I saw it I thought of that day. I've only recently felt able to clean it up and wear it again The doctor told me in a sombre manner that it would be necessary to remove my breast and I remember not quite understanding why she thought that this news may upset me. This was NOT my primary concern. My big fear was that a grade 3 tumour had been left unattended for up to 6 months. Why was I seemingly the only one in the room who saw this as a concern, a huge fucking concern. When I voiced my fears the nurse said that this was not necessarily the case I was healthy, felt fine etc. Now I realise that she was only doing her job and trying to allay fears but come on. Despite the potential threat of spread not being fully addressed, I was told that standard procedure was for a full body, bone and brain scan to be carried out. In the meantime I would be seen by a plastic surgeon and a mastectomy would be done followed by reconstruction. If this was all that I had to face then I would be happy. It's funny how your perspective changes.

Russell and I absorbed the news over the next few days and probably adapted to it with relative ease, all things considered. At this point we decided to get married. A wee bit of a theme was emerging here. Cancer diagnosis; house move, cancer diagnosis two; a wedding. Yes we appeared to like layering stressful situation upon stressful situation. Its how we roll apparently. As it turned out organising the wedding was pretty easy. Going through scans and awaiting the results was less so. I busied myself in getting a wedding together in 3 weeks. It turned out that having cancer was quite useful in persuading the lovely man at the registry office to slot me in for the 29th of September in Hamilton registry office. Job done. Just a few outfits to organise and a hotel to book for a very quiet reception. Meanwhile I had a lot of appointments to attend. On the day of my brain scan, Tracey spent the day with me and we went for lunch in between procedures. We talked honestly for the first time about the prospect of me being given unwanted news and how we would cope if this news was delivered prior to the day of the wedding. We both agreed that we would cope and enjoy the day regardless, but it was a sad wee moment. We quickly changed topics and moved on to what we do best, looking at dresses on Tracey's iphone.
I attended the Royal to see a plastic surgeon and he outlined potential options for reconstruction. Now, call me shallow but my mood improved dramatically when I realised that the outcome was going to mean that I would have a new breast built from my tummy fat. I feel compelled to mention that there wasn't enough fat in my tummy to build a breast the same size as my other (vanity is a defect that I am working on) and so it was agreed that I would have the other one reduced. This was sounding good, new boobs and a flat stomach. This I could cope with. With the bad can come the good. I used this to get me through the next couple of weeks. I was due to have surgery on the 10th of October and was finishing work on the 28th September, the day before we were getting married. And so life went on.
On the 20th of September I was in my classroom working when my mobile phone rang. I recognised the number, it was the hospital. I answered filled with dread and fear. It was indeed my doctor. She introduced herself on first name terms, I was good at spotting the calm before the storm and instantly recognised bad news ahead. After the initial pleasantries she asked me if I could speak privately. She told me that the chest scan had shown a "nodule" on my left lung. Again I was surprised by my reaction. It felt like my very first diagnosis when I was able to take the news without falling apart. I calmly asked her what this meant. She told me that it could be nothing but that given my situation they would have to investigate further. I concurred!(that one's for you Louise/Alan Mairs) I was booked in for a PET scan the following week. This scan is the latest technology which is able to detect metabolic activity at the suspicious site. Cancer cells are fast moving (of course they are, little bastards) and this can alert doctors to potential tumours as opposed to the more innocuous "nodules". This scan is not too pleasant but really it's the results which are the killer(pardon the pun).

I had the scan and of course feared the worst but I was getting married and so tried to keep bad thoughts at bay. I (and many others) was also mindful of many years of chest infections and one bout of pneumonia and was quietly praying that this was nothing more than scar tissue from this. I have realised on this journey that as human beings we are very resourceful when it comes to finding hope in seemingly hopeless situations. It has been a nice realisation. The wedding was great and I managed to forget all about the results which were due the following week, alcohol does that. Sadly that would become another issue but that's a whole other blog which some day I may write. Post wedding fear soon set in and suddenly it was time to go back to the hospital. When we arrived I remember looking at the over crowded waiting room and thinking that if I was called quickly then it wasn't good. Sure enough after a few minutes my name was called. Another wait which seemed to go on forever ensued in the room of doom. When the door opened, yet again the doctor had brought along the nurse and yes there was more silence and general awkwardness. I suppose I must have prepared myself more than I realised because again I spoke first and said it for them, it was cancer in my lung wasn't it. Yip, they didn't put me right. More apologies and platitudes which I didn't really hear. I was told that without a biopsy they could only make an informed decision on calling it cancer, there were actually 2 nodules and the medical team had agreed that they would be treated as cancerous tumours. It was decided not to biopsy as this would be too invasive. I agreed. I was scheduled to see an oncologist that morning and told that surgery would be cancelled and immediate chemo put in place instead. No flat tummy after all. The oncologist talked us through the options and I was told that I could be put forward to take part in a clinical trial which was aiming to determine whether or not a particular chemotherapy was effective on my type of cancer, non hormone sensitive or triple negative as its known. This whole mysterious, unusual form of breast cancer was now going to become more readily talked about and I was about to learn a whole lot more about it. I saw my original oncologist the following day and she put me forward for this trial. Russell asked her if this was curable and when she asked me if I wanted the answer to this question, I think we all know what it was. I wasn't quite as composed at this point and there would be many tears before the day was out. The dreaded chemo was now well and truly going to be part of my life. My cancer from here on in would be "managed" through the use of the thing that I hated most. This time around I would not be so accepting of it.

know your body

'Tis a lesson you should heed.  If at first you don't succeed, Try, try again.

1840 T. H. Palmer Teacher's Manual 223
Once I was admitted to hospital I was put on intravenous antibiotics and started to feel a bit better. We were due to move house that week and I was a bit stressed by that. Poor Russell had  a lot of running around to do and it wasn't helped by the fact that my signatures weren't matching up to computerised ones. Thank god for the lovely man at the RBS for trusting. When I was visited by a doctor she asked me to talk her through the last couple of months. She wasn't impressed by my tale and said that my chemo regime should have been changed long ago and my side effects were intolerable and unacceptable. Hmm my thoughts exactly. She asked my permission to write to the oncology staff stating this. I didn't argue.

I recovered and was dismissed in time to move into the new house. The bonus was that many friends had come round and spent their Saturday painting the whole house from vile magnolia to white. Thank you all of you. When I went back to the clinic I was asked if I wanted to stop chemo at this stage as it was doing so much damage. Anyone who has been through this type of situation will know how hard that was. The thought of another dose was hellish but at the same time I wanted to protect myself in the future. I decided to have another round at a reduced dosage (at last some tailoring of the drugs) and see how it went. I remember thinking that I couldn't live with myself if it came back and I had chosen to cut it short. This time around it was less awful, that's about the best I can say about it. I did get through it though without major health issues but it was still hard. At my next appointment it was decided that we would call it quits. I was delighted as it was nearly Christmas. Within a very short time I was feeling good and my hair was coming back. We had a nice festive season.

I was due to start my radiotherapy early January and I was dreading what that would bring. This regime means that you go daily for a session for a month. To be fair it was straightforward. During this time I started to have other problems. What I didn't know about chemo was that the effects linger on. Its not a really a big surprise I suppose. I had developed painful joints and other ailments. I was told that these were just the chemo hangover. I had also gone into early menopause and the hot flushes at night were causing massive problems with sleep. Again, just another nice wee reminder of the chemo. I ended up agreeing to take part in a piece of research into post chemo menopausal symptoms and the effects this had on sleep. I kept a sleep diary as part of this and only then realised that I was averaging about 3 hours sleep a night.

On February 10th 2012 I had my last radiotherapy session. It was over. I asked one of the radiographers what happened next and she told me that I would be sent a letter for an appointment with a consultant in about 6 weeks. That letter never came. Here is yet another example NOT to follow. I got energy back and tried to get back into a normal life. I was actually pretty down and I think its probably not uncommon to feel this way after such an experience, but at the time I couldn't understand why I didn't feel happier. By March I was noticing changes in my breast. It felt strange and the area around the scar from the lumpectomy felt hard. I wasn't overly worried as I rationalised that after all of the shit I had been through there couldn't possibly be any cancer. The changes continued though and when I went to the clinic as part of the research I was taking part in I asked to see my breast care specialist nurse. She wasn't available and I asked for a message to be passed on about my concerns. I never did get the chance to see her. I was confident that my follow up letter would arrive and that I could discuss the issue with a doctor soon.

Time slipped away and before I knew it, it was Easter holiday and then it was May. I still had no appointment through. By the May I was having pain in my breast and there was what I could only describe as a lump where the scar was. Russell told me to see my GP but my argument was that I was now in the care of the Beatson and my GP wouldn't really be able to do anything. Like most people I had always believed that breast cancer was not painful and that if you had a painful lump then it was more likely to be a cyst or some other benign problem. I didn't bury my head in the sand but I also didn't do as much as I would recommend anyone else to do about this. I did make many phone calls to my breast care nurse to find out about my follow up appointment and get general advice but these were unsuccessful. Getting through to the right people isn't easy and if I could go back in time I would turn up at the hospital and demand to be seen, please don't make my mistake if you are ever in such a position. Listen to your body and MAKE the care staff listen to you. More time passed and before I knew it I was back at work. The pain etc was still ongoing but I was less free to pursue the issue. By June I was no further forward and very frustrated. I decided that I would just wait and see my original consultant after my annual routine mammogram which was due in late June. I went for this and was going back for the results in the July. We went on holiday and my breast was becoming more painful and looked pretty mental by this point. I was back to the clinic to where it all began a year earlier, at the end of July. My original consultant came in to the room and announced the good news that the mammogram was clear. Great. I was less confident. I told her about the problems I had been having and she asked what they had said at my follow up. What follow up? This wasn't discussed any further. Deja vu? When she examined me she agreed that my breast looked pretty awful and suggested plastic surgery. She also said that we should have an ultrasound just to be on the safe side. This was scheduled for the following week. I was beginning to worry. The ultrasound again showed nothing suspicious and I was told that there was a lot of bad scar tissue but no sign of cancer. As a final precaution I was given a biopsy and would get the results the following week. I was told not to worry too much as I left.

The following week I went back for the biopsy results, I had taken the advice and not worried too much. So much so that I went alone as didn't see the point in Russell coming home from Ardroy. As I waited I was thinking about my Higher class and a couple of things I wanted to say to them later that morning. It was only when I was called in to the consultation room and left on my own for a few minutes that I asked myself "I wonder if I should be worried"? In no time my question was answered. The doctor appeared and yes the angel of doom just over her shoulder. The journey was about to take another twist.

Chemo days continued...

The 3 weeks between my first and second chemo were long and a bit crap. I felt pretty rubbish but I would say that the biggest issue was the non stop headache. The pain was kind of on a par with a migraine and I found it difficult to do much. The other side effects weren't too great either. I did have a respite period for a few days before it was time to do it all again. The system works in such a way that your breast cancer specialist nurse sees you every 3 weeks prior to the next chemo to assess how you're coping with it. I was hopeful that when I saw her and told her about the problems and in particular the headaches that this would be looked at and maybe something done about it. Wrong.

I said in my first post that I wanted to share with others my experiences so that they could learn from them should they ever need to use such an education. Hopefully this will be the case. Despite my awful headaches and numerous other symptoms I was back at the clinic on the Thursday for round 2.
The drill was much the same, and after treatment was given I went home. This time my headaches were even worse. My nurse had explained that she felt that these were being caused by the anti sickness drug which was given intravenously and then in tablet form to be taken for several days after chemo. She said that without these drugs I would throw up constantly and therefore they were necessary. I didn't think to question this. This time the headache was constant for about 18 days and no pain killer helped. It was difficult to function. I found myself in bed most of the time. My hair had completely fallen out. This had started about 2 weeks into the first treatment. My head had started to tingle and then hair began to shed. It was a wise move to take the clippers to it as the house was filled with hair. It actually wasn't as bad as I thought. Russell did the deed and I quite quickly came to terms with my new look. To be honest I felt so awful that I didn't really have time for vanity. Another major side effect for me was constipation. My bowel didn't work and the advice was to take lactulose. I don't know how many people have tried this liquid but I find it pretty hard to drink at the best of times, so trying to take it whilst nauseated was not easy. The constipation was to become an increasingly big problem.

I became increasingly withdrawn and depressed I suppose looking back. I was in bed most of the time and had no energy. When I went back for my check up I again relayed the issues but the regimen remained the same. Before chemo is given blood tests are carried out and your white blood cell count has to have recovered enough for the next dose. At the end of cycle 2 mine were too low and chemo was delayed a week. I suppose this wasn't a surprise given how hellish I felt. I got a "holiday" and it was nice to feel slightly normal. However the next round came around all too soon. It was taking longer at the clinic as my veins were less able to take the chemo, as they were being destroyed by it. It also becomes really hard for the nurses to find a vein to take blood from or put the canula into, this for many of us is a problem that we continue to live with. Sometimes its necessary to use veins in the feet. Again I had the constant headache along with all of the other shit. It was another 18 days in bed and a wee sense of relief for 3 days before going into the next session. I was definitely depressed by this time. In a moment of true wisdom we had bought a new house and were due to move in in a couple of weeks, funnily enough I didn't really feel that I had the energy!

By treatment 4 I had had enough and though I was trying to focus on the house move I felt crap. This one was particularly bad. After a couple of days I developed a really sore throat on top of everything else. Now when having chemo a sore throat can be dangerous as it is a sign of an infection which can then rapidly spread through your body leading to septicaemia, so not good! Its recommended no actually recommended is like a dish in a restaurant so forget that, its bloody imperative that you are seen by a doctor. Russell phoned my practice and requested a house visit. One of the doctors called back and said that instead of a visit he would leave a prescription for antibiotics to be picked up. Hmm wouldn't an examination be more appropriate. When we phoned the Beatson they said that this was unacceptable and that a visit was necessary. Another call was made to the surgery and much to the Doctors annoyance he agreed to come out. 5 hours later he arrived and was clearly not happy. he told Russell that this was a waste of his time and that antibiotics were more than enough. He came through to what felt like my death bed and after a cursory glance at my throat, said triumphantly, yes as I said just an inflamed throat. Jesus Christ this man was something else. After a few more words with Russell in the hall, whereby he told him that he had been through chemo and sore throats were just par for the course, he left. What brilliant care. 2 days later I developed more throat problems. To be fair this time a different doctor came quickly and diagnosed oral thrush on top of the infection. Life was good, ha! Another 2 days later I felt as bad as I ever had. I had a temperature which again is a vital sign of danger and couldn't get out of bed. A doctor was sent from NHS 24 and he asked me if I wanted to go to hospital. Hmm I didn't think it was about WANT, again the care was pretty shit. By the next morning things were bad enough that Russell called an ambulance and I was taken to hospital. For the first time I met a doctor who actually listened to me. I was neutropenic sepsis and she didn't hesitate in admitting me. Finally I was about to get some actual care. The things you have to do to get some attention! I hope that this message alerts others to being less accepting

Chemo days

He who has a “why” to live can bear with almost any “how.”

 Nietzsche


2 days before I was due to begin chemo I met with my breast cancer specialist care nurse. I was interested to see that the girl in front of me was the other under 60 from the previous weeks clinic. It looked like we had both drawn the short straw. In true conveyor belt fashion I would see her regularly, one step in front of me for the various checks and tests prior to the dreaded day of chemo. I was half expecting to see her at the hairdressers with my friend cutting her hair off before it was my turn.

I was told all of the things to expect on this 6, 3 weekly cycle drug regimen. Interestingly and only slightly amusingly named FEC, it was very aptly named it transpired. This particular regimen is a combination of three different chemos Fluorouracil, Epirubicin and Cyclophosphamide. It is used on breast cancer patients and is known to be a hash treatment, unfortunately I learned this to be the case the hard way. The common side effects I was told were, fatigue, skin irritation, definite hair loss, mouth sores/ulcers, nausea, constipation and a strange taste in the mouth. These didn't necessarily effect everyone and could be short lived I was told. There were other side effects too lengthy to mention but all listed on various cancer websites. It was daunting to reconcile that in a few days I would willingly allow this poison to be put into my veins, but so it was to be. My GP once said to me that our children would look at chemotherapy one day in amazement that it was inflicted in the name of medicine. I certainly hope that's the case. In the meantime I'll keep taking it. Anyway my breast cancer specialist nurse talked me through the various precautions to take, such as using a child's toothbrush as my mouth would be delicate, using baby shampoo (to wash the bald scalp I may add), avoiding the sun, eating bland foods, and other tips. It was all a bit overwhelming and in a sense unreal. What couldn't be advised was how to deal with it psychologically. That was down to me. I didn't have a clue!

I didn't really sleep in the couple of days prior to the first session and was slightly dazed on the morning of it. It was odd to leave the house feeling perfectly healthy and not having any idea of how I would feel on return. I'm sure I felt like the vast majority of people feel going into round one...ding ding.
The nurse at the clinic was very helpful and offered some advise on what to do once the chemo had been administered. It was important to drink copious quantities of water in order to flush out my system as it can cause UTI's. A strong memory I have of those days is standing in my kitchen drinking glass after glass of water until my urine went from bright pink back to normal and only then would I go to bed. The whole process between pre meds, which include anti sickness drugs and steroids, and the chemo drugs themselves took a couple of hours. The sensation of the chemo going through my veins was strange and pretty unpleasant. This would get worse as treatments went on. For me one of the worst things about this regimen was the damage that it did to my veins, damage that is lasting, unfortunately. Once it was over I was sent home. We stood in the kitchen and I drank and drank and drank (water, not wine, although I would try the latter later). I went to bed afterwards and waited for the side effects to take over. Who knows whether or not my mind was working overtime or if I had just been so tense, but my legs were in bloody agony. This was not a side effect I had been told about. The Beatson weren't too much help when we called, to be honest I think stress was the most obvious culprit. I drifted in and out of sleep and did feel nauseous I also had bizarre kind of trippy dreams. In short I felt WEIRD. Sleep that night proved difficult as I had strange cramps in my legs and more trippy dreams. I woke up the next day feeling just as shit and had a thumping headache, horrible taste in my mouth, nausea and general tiredness. The good news is that this only lasted, em most of the 3 weeks before I was due back for round 2! This was one fucker of a chemo.

and on it goes

 "None loves the messenger who brings bad news"

Sophocles







Having thought about the previous post I have realised that I would advise anyone to check out waiting times for examinations, surgery etc through their hospital guidelines depending upon which Health Board you come under.

I talked before about my waiting time and the problems that it brought. I would like to say a bit more about this. In the days between diagnosis and surgery I was in touch with breast care nurses at the hospital. I was told that in all likliehood after my surgery I would be referred to the Beatson for radiotherapy. It all sounded really quite straightforward (I had a friend who had ben through this without complication) and I have to say I didn't worry too much. The general feeling was that this situation would be dealt with in a straightforward way. It was with this feeling that I went in to both my surgery and my follow up appointment. The surgery itself was straightforward and I was home that evening. Recovery went pretty well. I returned to see the surgeon a week and a half later. It was interesting to see all of the women who had had surgery on the same day as me all gathered again to find out their fate. As you would expect I was definitely one of the younger women and out of 6 of us only 2 were under 60. One by one we were called in and judging from most of the faces on coming out the news was positive. One woman was happy to tell me that her tumour was grade 1 and she only required radiotherapy. Good for her! When it was my turn I was still not too concerned. Imagine my disappointment when the doctor broke the news that firstly; there was no disease in my lymph nodes, the drill seems to be that they start with a positive, although these would become increasingly hard to find, and then give the bad news. So, no lymph node disease, brilliant. Hmm, the BUT was coming, the tumour was grade 3, very aggressive and non hormone sensitive. The last bit of information was glossed over and I would only learn the real ramifications of this later. So what did this mean? Essentially it meant that rather than the straightforward scenario I had been expecting, instead I would be going through chemotherapy. This, I was told, was a belt and braces exercise. In other words they were confident that they had successfully removed the tumour, however the chemo was to clear up any potential stray cells. I was devastated for the first time. I had gone from looking at a month of therapy which would make me tired to 5 months of therapy which would do god knew what to me. This time I didn't cry for the doctors benefit. I was referred to an oncologist and the appointment was the following week. At this appointment I was given more information about my condition and why chemo was being strongly recommended. Again the whole non hormone sensitive issue was raised but not really explored or explained. Basically what I heard was that my type of cancer wouldn't respond too well (if at all) to the newer breast cancer drugs which are thought to be the wonder drugs, like Herceptin and Tamoxifen. Tamoxifen is a tablet which is prescribed to women who have an oestrogen based cancer and is taken for up to 5 years post surgery. For many women it is indeed a lifesaver. This wasn't the case for me. And so I signed up for the dreaded chemo. I stipulated that I would only begin treatment after the 20th August as I was having my 40th birthday party. They agreed. Chemo was scheduled to begin on August 25th. This was definitely the real test of my endurance.