Trust

I have had most probably the worst few weeks of my life. This is the first time in a while that I have felt even close to normal and the fact that I can even use my vision to type feels good. Basically I was put on to such a ridiculous dose of steroids to reduce my initial symptoms that my whole body went into shutdown. In the first instance I did not question this and I should have. This is my message tonight.A t the beginning of December I blindly allowed myself to be sent home on a dangerous dose of deadly drugs...because I was terrified of dying quicker than I was ready for. The steroids quickly changed everything about me and I knew in my heart that it wasn't right. Over these last weeks I have had to speak up and truly fucking fight to be heard (not easy when pretty much catatonic). I told the doctors that I believed that the steroids were the main harm to me and that I just simply would not take the dosage anymore and lo and behold I have been taken from 16mg per day down to 2. The difference I cannot explain, yes brain radiotherapy is leaving me with horrible head pains BUT I don't have literally dozens of other side effects which in all honestly had taken away every fibre of ME! That includes my personality. So tonight I feel well enough through my choices to continue to send the message that we must know our own bodies and not just be passive recipients of a truly vile drug cures all culture. TRUST your own instincts.

A quick note...

I am going to write a short one. My health is poor so I will say what I can. I am due to start radiotherapy on xmas eve and I have been prepared for the fact that it may not work, there is a good chance the end is quite close. This is ok and I have acceptance. Im in a great place as I am both ready to live and at peace with the alternative. The steroids have reduced some of my symptoms but the actual cancer cells are playing havoc with me and my quality of life is at rock bottom. I have great people around me and my household is peaceful that's all I need right now. Christmas is inconvenient but I smile as I write my will on Tuesday night as people are out stressing over stocking fillers, such perspective to be gained. I want to thank everyone for their kind wishes and genuinely mean it when I say don't be sad.  one day at a time.

Winning the war...

Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behaviours. Keep your behaviours positive because your behaviours become your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.

Ghandi



Cancer affects so many people when one person is diagnosed, in this respect I have both a battle and a full on war to fight. My battle is simply to keep on fighting to keep it from ending my life. My war, on the other hand is of course full scale. The war is to protect those I love from having their lives devastated. I am currently awaiting battle but fully waging the latter.

I have no real control over the actual cancer at this very moment, that will begin when I have met with the specialists, in the meantime I'm doing what I can to make life as normal and productive as possible both today and in the future. Its all about the practical right now. My biggest war casualty is and will be Olivia, the love of my life.

So, I am going to talk about my gratitude since the news on Tuesday. Firstly I am so glad that my mum doesn't have to be here to endure this because that would be too much. Secondly I am so grateful for the amazing people who always rally round me when the shit once again hits the fan. Many of these people have been in my life BECAUSE of the cancer and the way in which it forced me to shake up my life and change it and without the cancer I wouldn't have had the privilege to know them. And they remain and they enrich. I had drifted rather far these last few months and I had lost all of this good and having this news forced my hand and brought the good back. Cancer is my physical illness but my biggest danger is spiritual malady and while cancer has reared its ugly head for now, my spirit is in the best shape it has been since August. I know where I would rather be. My fighting, nurtured spiritual wellbeing will let me win the war if not the battle. It will let me today create good in the lives of those who may be left behind, those in the crossfire. I am putting so many practical things in place for the future because while I am sad I am not feeling sorry for myself. I am putting others before me and its a wonderful place to be.My brother and sister were very upset by the news and they too have only recently lost their mum. I want to help them as much as they want to help me, but here s the thing their power is limited over cancer but mine is not when it comes to helping them cope My oldest and dearest friend makes me want to cry with her kindness and love and friendship. She has moved in and we are taking our lives forward positively. We are moving to the new house in January and we are all genuinely excited, its not a contingency plan its just a plan that works for today and for any other day down the line, cancer or not. I am providing everyone, myself included with the best possible Lesley that I can be. If that means a Lesley who has physical health issues then that's fine. If I don't have my peace and inner belief in doing the right things then tumour free or not I am not healthy and I am spreading an illness far more potent than cancer. I have gone back to taking a moment in the morning to reassure myself before I start my day that "everything will be alright" I don't try to control what that will actually be nor do I have an agenda, that's living and that's winning the war.

I don't know how to die...

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment
Buddha


I only recently learned to live properly so here's the thing, I'm not ready for any new learning projects and I don't know how to die. Quite simple then I CANNOT.

Its been quite a couple of weeks. I haven't been feeling too well and I had a horrible feeling that it wasn't just a winter virus. SO what did I think? I thought, of course that the cancer had returned and sometimes it just sucks to be right. My head had become painful and wouldn't shift but fear kept me from addressing it full on. When I began to lose my motor skills I knew that I was in trouble. I was eventually unable to stand up and I was vomiting. The outlook was ominous. During this time I was devastated to learn that my beautiful friend and fellow cancer fighter had passed away. Carla was only 38 and she had fought her breast cancer for many years. Her passing has been a blow. We helped each other these last few years and I will miss her terribly. However I am also relived that she is no longer suffering. My symptoms were so bad that I couldn't even attend her funeral.

My condition continued to worsen and I had to make the necessary move to be admitted to hospital on Monday. Of course they did a brain scan and the rest is history. Yes this evil disease has found its way into my prized possession (I can cope with my boobs being overtaken but not my brain). I have multiple mets to my brain and they have most probably been there a while. The news was delivered somewhat badly and so thankfully I've had enough experience of such news that I didn't have a melt down (in fact me and my group of visitors were asked to keep the laughter down later that evening...that's my coping mechanism). So what NOW??I am hoping that they can blast the tumours with radiotherapy and then I will take it from there. I have through no choice been forced to practise living in the day.

Once I had a couple of hours to digest the news on Tuesday night a sudden realisation dawned. Since my mums death I have not been in a good place and i was falling into a depression I wasn't doing my stuff and had slowly stopped attending the places which keep me spiritually whole. I had lost a lot of me and it was noted. his horrible news has given me a much needed kick into shape. I told myself on Tuesday night that I AM alive so lets get back to living. I spent the night in my hospital bed finding positive information on my condition and believing that I could do this. It helped, my spirit came back. I am now ready to re enter the world because really I am no different from anyone else in the fact that all we truly have is the now so make the most of. SO I am home and the tree is up and Olivia is going to have a great Christmas. I'm excited to be spending the first Christmas in a while with my brother and sister and nieces and brother and sister in law. That's my focus and I will keep from my mind that I am due to move house in January. Definitely ONE DAY AT A TIME.


P.S

I have so many amazing people in my life Tracey Arneil you are my hero and Carla Burns it was a privilege to have you in my life I only wish it could have been for longer. And you all know who the rest of you are.

A Mother's Love

I haven't written for ages. Is there a reason? I don't really know. All I know is that I am grieving for my mum and I don't know how to get past it. I miss her every minute of every day. She was such  a massive part of me wanting to beat this shit disease and without her I honestly don't know how to feel. I saw the pain my mum went through during all of my diagnoses and I just wanted to make it better for her, to somehow ease her pain. and so it was vital for me to fight to stay alive. This is also true for my daughter but its different because an eleven year old deals with things so differently and much as the thought of leaving Olivia fills me with horror, she processes things differently from adults. My mum was my support while simultaneously being my reason to keep going as I knew she couldn't cope without me. Now that she has gone I am definitely struggling to make sense of things. I am more scared than ever.

Honesty

“Don't be afraid of being scared. To be afraid is a sign of common sense. Only complete idiots are not afraid of anything.”

Carlos Ruiz Zafon      


I last posted that I am NED, it is a great piece of news and I truly appreciate it. However its a strange life with cancer and I am writing, honestly, tonight about how I truly feel. The truth is that I am very depressed. I have spent the weeks since my surgery in a black hole. I just can't get excited about life and it baffles me as much as anyone. I am thinking that a lot of it comes from the loss of my mum because I don't believe that I have fully dealt with that yet. Whenever I think about the night that she died I send it from my thoughts (not healthy). Since surgery I am actually lower than I was before it. It is pretty inexplicable but I think that I may have some answers to my feelings. I think that I have recognised the cold harsh reality of living with a disease that hovers over you on a daily basis. The problem is that you are very alone with it. In the beginning when you are going through your first chemo people are there and want to help. When its 3 years  down the line that fades and you're pretty much on your own. People have their own lives to lead and they quite simply disappear (not everyone I have a few special people). People don't see a physical difference in you and therefore choose to believe that you are "fine". The reality is that I'm not fine. I'm still as scared as I have always been. I'm still living with secondary cancer. I read the article this weekend about Lynda Bellingham choosing to stop her chemo and die and I cried because I am aware that this will be my situation one day. This won't be tomorrow but it will come and it's fucking hard. I try to find the good in my situation and the vast majority of the time I manage to, however I am not coping too well with the hand that I was dealt lately and I thought that it was important to share because this blog was started with the view to being truthful about life with cancer. It really isn't easy.

Keeping it simple...

There is no greatness where there is not simplicity
Tolstoy

Very few people in Scotland like the idea of the term NED being used to describe them. I am not one of them. In the cancer world the term means No Evidence of Disease. This is my status today. Having had successful lung surgery the last evident piece of cancer was removed from my body. How amazing. 3 weeks ago today Mr Kirk (surgeon extraordinaire) spent a couple of hours checking out my insides and managed to take out the only piece of cancer he could find. I got my pathology report of this cancer yesterday and as expected it was the same pathology as was removed during my second breast surgery. The great news was that there were clear margins, which simply means that the tissue surrounding the tumour had no traces of cancer in it. So what does all of this mean? A good question and one with no clear answer. Am I cured? NO. Am I free of chemo? NO. Will I be free to go on and live a completely normal life? NO. All sounds a bit negative doesn't it.? NO. Not to me. 2 years ago I could not have imagined being told I was NED. For these 2 years I have become very accustomed to my very altered life, a life which requires a lot of effort in order to hang on to it. However, here's the thing, when diagnosed with incurable cancer all that matters is that you stay alive, and you really don't mind the how of it. If it means having intravenous chemo every week, having no hair and just as little energy then its ok, you are alive. For the moment as I am NED, this will not be my experience, however, the most difficult part of it all will remain with me for life. That is, the not knowing and of course the 12 weekly scans. So while I will not go to chemo clinic in the next months I will go for scans. For so many weeks every year I will be filled with fear. Fear that my scan shows the return of the cancer. It will not be a surprise to anyone if that turns out to be the case down the line. Therefore it is imperative that I continue to foster the "living in the day" philosophy. Truly live life one day at a time. As I have said before it is a strategy that would benefit anyone in this world regardless of their health status but for me it is essential. Living with secondary cancer really encourages you to make the most of life. There wont be a day for me when I am given the "all clear" my life will simply be NED or ED. For the moment its the former and I couldn't be happier and more grateful. So in the spirit of this I am going out to enjoy the beautiful late summer sun, like my good health, who knows how long it will last so best enjoy it while I can, simple really.

A new era...

It won't leap past us
The incredible is approaching from over there
It won't leap past us
We won't be left in a dark vale
To watch it go

 The incredible is approaching from over there

 This time
It won't leap past us
Won't be left no
It won't leap past us

This time

A woman transformed into twinkling stars, headlines, headlines
No going home tonight, no going home tonight
The wrath of angels
 

 

David Gray The Incredible

 

 

The incredible did not leap past us and we laid my mum to rest on Wednesday morning. She is now indeed twinkling stars.

 

It has been the hardest two weeks of my life and yet as always through the heartache, joy and miracles have shone through. The day after my mum died I was telephoned by my surgeon and told that he was willing to do my surgery and that I will be operated on this coming week, the 20th of August. 2 days after my birthday and 2 weeks after my mum's death. What a month August has been. It will be one to remember and will always hold very special memories. I am in awe of what life can offer. It is approaching the 2nd anniversary of my terminal diagnosis and no one could have imagined that today I would be preparing to have the only remaining evident piece of cancer removed from my body. I truly am grateful. In some respects its seems so so sad that it comes at this time when my mum isn't here to see it. However, I have to believe that she knows exactly what is going on and that she is smiling upon it all. She found her own peace, safe in the knowledge that I had learned to live a different kind of life, not in spite of, but because of my cancer (she was an avid follower of this blog and it hurts to know that she wont be reading it any more and telling me what she thinks) and that it helped me grow as a person. Without my diagnosis I would not be the person that I am today and now there seems to be hope on the horizon for me. I am so lucky to be, in the truest sense, given a second chance. I am determined to make it worthwhile.

Peace

No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star.


Edwin Hubbell Chapin


My amazing, wonderful mum passed away last night. I am grateful to be able to say that it all happened in the right way. I knew in my heart that the 6th of August would be her last day and so I arranged to sleep over at the hospice. It was with a heavy heart that I packed my bag to go last night, but somehow I really did know. My sister and I spoke earlier in the day and she said that she felt it wasn't what she wanted, to be there when she passed. That was fine because it was something that I needed so no compromise was required. Anyway things have a funny way of working out and Diane felt a need to come down last night. Miraculous because after I spent time alone with my mum telling her that I accepted it all and that I loved her, Diane and George arrived whilst I was making a phone call and she also got time alone with Janet to speak. I returned to the room, we were both there and she passed away so peacefully. I broke down of course but then I found an inexplicable strength to sit with her and tell her I would do my best to move forward. I drove home with the CD my mum bought for me a few months ago full blast and I cried and I laughed and I toasted my lovely mum. I am truly heartbroken but as the song says I will survive. May you find peace mum. You truly deserve it. Thank you for being you.

Determination to find acceptance...

Just when you think it can't get any worse, it can. And just when you think it can't get any better, it can.”  

Nicholas Sparks

I've had a week of extreme news. On the one hand I am grateful that I received the results of my PET scan and it is showing that there are no other cancer "hot spots" in my body, meaning that the one remaining, problematic tumour is indeed solitary and I assume that I am now eligible for surgery. This truly is remarkable news and quite unforeseen not so long ago. Sadly it is overshadowed by the fact that I was told by my mums doctor that she has weeks to live at best and he wanted to alert us to the fact that it could be days. This was very hard to hear and I am struggling to feel the motivation that I need to get through my own treatment. However I must. My mum would want me to remain strong and positive and she would want Olivia and I to be fine. I am continuing to spend a lot of time with my mum at the hospice but she is deteriorating daily and my strength and resolve is being tested more than ever before. My sister came home from Malta on Thursday and it was really difficult to watch her reaction to my mum's decline since she last saw her (just a few weeks ago). She was shocked by it and in a lot of pain and that brought everything even more into focus about this dire situation. The one blessing from all of it is, that it is nice for us to spend time together as a family (we don't that often) and all be there with one common purpose, which is to help our mum die in the best possible way. It is good to be reassured of our mutual love for Janet and to remember that she has been a great mum. Another positive aspect of this is that, just like with my own illness, I am able to see and appreciate the best in people and be reminded of the truly wonderful friends that I have. People have been brilliantly supportive and as well as help me, come to sit with my mum and help her in this awful time. This is what keeps me going. Death is an inevitable part of life but that doesn't take away the pain of it, however when I find it difficult to get out of bed in the morning I think about the good things that I have. I have had 42 years of unconditional love from my brilliant mum, I have a daughter who is also struggling and who needs me more than ever and I have the continued love and support from many others in my life. I need to focus on this in these coming days.

Another unwanted visitor...

"God could not be everywhere and therefore he made mothers"
Rudyard Kipling


I haven't written here for a while and so much has happened in that time. I have actually felt too scared to put down my feelings, scared that by putting them in writing that I will be too overcome by my emotions. However, several things happened today that I believe to be signs that I need to get better again ( my spirit has been bereft for a while) and I couldn't ignore them. I have come in touch with a lot of people today who have put me back on the right path, the final happenance was bumping into a wonderful person who I reconnected with through this blog way back when I first started writing it and who I had communicated with online. I actually came face to face with her tonight by chance and had a long chat and I realised that it was time to get back on track. Thank you Paula.

The main reason for my emotions being so fraught is that after coming home from my holiday to Malta I learned that my mum is dying of cancer. There I said it. My lovely, brilliant mum is not going to be with me for as long as I wanted. I am devastated, I am hurting so much more than when I had my own diagnosis. I am hurting in a way that I never have before, because the truth is you only have and only get one mum and she is going to be gone soon. The fact of the matter is, that my mum is actually ok with it all, and she feels that things are finally happening in the right order; she will go before me. She is right of course and silently for the last year I have prayed that this would happen and that she would not have to watch me die, she has already lost one child and I have been only too aware of the devastation that my death would have upon her. Sadly it doesn't make it any easier and I definitely wasn't prepared for how much pain I would feel at this. However I realise now that I have to face it with the same attitude that I face my own situation I have to accept it for what it is...death is a part of life and it has to be faced with courage and dignity and absolutely most importantly with acceptance. Acceptance brings peace and allows us to celebrate what life is and ultimately allows us to let go and treasure the good. I am spending time with my mum just now crying, laughing and accepting. Yesterday we sat in the family room of the hospice and we reminisced and of course this brought back funny stories to us along with the sad ones, stories which are quite simply our history and the history of my family that I will pass to Olivia as I was passed stories of my mums life. It is what it is and painful as it may be I have to accept it and somehow find the good and the right in it. I will do my very best.

Share and share alike...

Keep it simple



I received a message from a girl who I don't know tonight but who has been reading my blog. God I love the power of sharing. She basically advised me that while the Budwig cancer regime is absolutely genuine the clinic in Spain is not. I have now looked into this and indeed this would seem to be the case. So, here's the thing, I get to do my own research and subsequently embrace the Budwig diet (on it) but save myself a small fortune in visiting the seemingly iffy clinic. Win win, I say. Thank you Caroline for being so kind as to bring this to my attention and I in turn am bringing it to the attention of others. Happy days. P.S the Budwig diet starts soon goodbye all treats...it's worth it.

Getting to the root of it...

I dwell in possibility.

Emily Dickinson


I have just returned from a lovely 5 day break with my sister in Malta. 5 days of doing nothing but reading books and enjoying the sun. I feel very rested, in the main, however my scan is looming. I am having to use all of the tools I have to keep my mind in the day and not project. I certainly haven't perfected this but it is a work in progress. I had not only a relaxing time but also an informative one. My brother in law introduced me to a new clinic in Spain called the Budwig Clinic and I have to say I am fascinated by its somewhat novel approach to treating cancer. Unlike conventional therapies, it looks beyond the cancer itself and aims to understand WHY a person has cancer in the first place. This I am up for. One of the things that struck me in the literature was the mention of the link between root canal treatment and cancer (especially breast cancer). I have had root canal for 20 plus years and I am looking to have it removed. I would say to anyone who has this dentistry work to investigate, who knows it could save your life. Apparently this is no secret in the dentist industry but they prefer not to share it! This clinic has really caught my attention and I am hoping to go there for a 2 week visit where they will run all sorts of tests and then hopefully give me some answers as to why I ended up with cancer at 39. They then offer a lifestyle plan which could potentially add some time to my life. Of course it's not cheap and I have decided to try to do some fundraising to make the trip possible, so anyone who has any ideas on this please get in touch. It is yet another avenue to be explored and it keeps me from getting too down hearted about my future. Since my return home we have had some sunshine so I am making the most of that. I will spend the next couple of weeks before my scan result enjoying the small things and investing time in my plans for a trip to the Budwig clinic. I cannot afford to get ahead of myself and like I always say I will hope for the best but prepare for the worst. Fingers crossed.

May it be good...

May, she will stay
Resting in my arms again

Paul Simon,  April Come She Will

I love the month of May. It brings hope and promise. Promise of the summer ahead, sunny days and good feeling. May is a time for optimism, blind, eternal faith. Sadly it often tricks us and the promises are unfounded the rest of the summer but I still love it. It sums up the way I feel. I kind of know that my future could be a broken promise but I refuse to believe it. I am currently doing work in my garden and I'm very excited about how it will look soon. I'm equally working on my mind. This is the key to keeping sane. Although the sun is hidden this morning (but I am hopeful for cloud dispersion) I have been up since six. Just doing little jobs around the house and generally feeling good. I don't waste days anymore. If I wake up early and don't feel too crap, I get up. I do this because I value the day and I especially value the ones where I feel good. Adverse circumstances, including death serve a purpose. They serve to remind us to live and take what pleasures we can. So I attended a funeral on the cusp of my very special month and I tried to remember that no matter what, it is our duty to live to the fullest capacity. The sun came out for Jordan on Tuesday and hundreds of people said goodbye. Experiencing the death of someone so young brought me hope, hope that there is something else once we die and in a way it chipped away some of my fears about my own future. I am due a scan and I will be on a rollercoaster ride again the next couple of weeks but I refuse to be scared. May is the month for optimism and for believing that anything is possible.

Mindfulness

“These woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.” 

Robert Frost,   Stopping by Woods on a Snowy Evening


    It has been a strange day and one that has brought me to this page. A wonderful young friend of mine tragically died recently and I attended the funeral parlour today to pay my respects and to give support to both of his parents who are also dear friends. It was, as expected, an emotional experience. His funeral will be held tomorrow and I, like many others, will say goodbye and grieve for the loss of a young life. I then came home to an unexpected and very welcome message from one of my old pupils. It really lifted my day. She got in touch to say that she had read my blog and wished me and Olivia well and that she thought that my blog could benefit others. It came at an incredibly appropriate moment (thank you Emma). It reminded me to be grateful. Grateful that I am alive, that I can still be a mum, a daughter,a sister a friend, a help to parents who are burying their son. I can also be of use to others who may learn something useful from my experience with breast cancer. Today reminded me that I started my blog with the view to passing on information as well as it being cathartic for me. I haven't been writing lately, and while this is no bad thing, as it essentially means that I am living my life and by no means dwelling on having cancer, nonetheless I was reminded that I shouldn't forget about this. Lately I have been able to live normally and put my disease to the back of my mind (most of the time). It's been three months since my last scan and I feel (in the main) healthy. This is great and long may it continue but I must remember to share anything of value here. As I have been doing well I haven't really been researching like a fiend as I often do, but I'm sure that will come again. My next scan, which is due soon, may or may not indicate if my using LDN is proving beneficial. I will report accordingly. For the moment I am reflecting on how valuable living with a positive mind set can be and how by doing so we can enrich not just our own lives but those of the people around us. Life is too short to be angry, or resentful or even just caught up in ourselves in a general way. We really must be the best that we can on a daily basis because as I was reminded of this afternoon, in the company of friends, we really only have today. I am not going to think too much about the forthcoming scan nor the results, I am simply going to try to live my life while I still can and as best I can.

The naked truth

 The only thing we have to fear is fear itself.

Franklin D. Roosevelt

So today people are showing their support for breast cancer by posting photos of themselves free from make up, naked and exposed, very appropriate as its exactly what being diagnosed with this disease feels like. On the positive side of that though, there is a certain liberation in such exposure. My breast cancer has made me look at who I am and I have faced up to a lifetime of insecurities and fears. Fear is what keeps us from happiness, it stunts us and blocks our emotional well being and balance. A good friend of mine quoted a wonderful AA saying FEAR can stand for Fuck Everything And Run or it can mean Face Everything And Recover. I am happy to report that I'm trying very hard to live in the second camp. In a strange way being diagnosed with secondary cancer allows you to do this. Maybe it's because you've already faced the thing that was always the biggest one. I read recently that the most feared word in the English language is cancer, not death but cancer. Not that surprising really. So perhaps when this has been faced down the rest becomes small stuff. This amongst other things has opened up the door for me to face up to the multitude of other fears that we all live with on a daily basis and this has changed my life and enriched the lives of those around me. It was facing fear that got me to the Jubilee hospital yesterday without concern. I was seeing the thoracic surgeon about my future in terms of surgery. I didn't have a sleepless night on Monday and I didn't let my mind race or project I simply went to my meeting with an open mind. This meant being prepared for him to tell me that he couldn't operate, that my condition was hopeless in this respect. He didn't. He was an amazingly open and straight talking doctor and I instantly liked him, and felt very comfortable with the thought of his hand at some point poking around in my lung! The upshot of the meeting is that he is willing to perform surgery to remove my tumours at some point but at the moment he feels that my disease is so "low level" that he would rather wait until further down the line. As I am only 14 months away from my surgery to eradicate my primary tumour it would be naïve to conclude that there is no disease elsewhere on the lung, it is too early for that. However that also doesn't mean that there is. So I am going to continue with my current chemo and keep being scanned regularly. I will meet with him again and we will review the situation. It's good, it gives me hope and we all know what happens when we don't have hope. It was also uplifting to be sat with a doctor telling me that my disease was low level, those were definitely words I liked hearing. I couldn't help but think that should my LDN work then the whole thing may only ever be theoretical. Let's hope so. All I do know for sure is that I continue to be optimistic, positive and most importantly I am happy today to face my fears, god knows I've had lots of practice

Sunny disposition...

Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.


Voltaire


I'm feeling good today, the sun is shining. I love summer and today fills me with hope that it is imminent. I haven't blogged for a while, not for any particular reason, just not that much to say I suppose. I'm still on my chemo and yesterday I had number 29. It's nothing short of remarkable in my opinion. From being told that I most probably wouldn't cope well with the 18 weekly cycle to this, we are truly individual. I also have an appointment next week to see the thoracic surgeon. It's 18 months since my secondary diagnosis and I still have no new disease, this is such good news and I am keeping an open mind to what my future holds. I try not too get too excited as I don't want to get too disappointed but on a sunny day like today I feel pleasantly optimistic. I am also continuing to take my LDN and just my faith in that keeps me feeling brighter each day, time will tell if this faith is merited, in the meantime it can do me no harm. I've actually been thinking a lot about taking responsibility for my own treatment and find it hard to understand why more people don't. I met a woman recently who has a similar diagnosis to myself. Her disease is under control just now but we were chatting about how uncertain life is living with secondary cancer. I told her about the LDN with great enthusiasm and was certain that she would be as excited as me by this potential wonder drug. The reality was that she wasn't. She listened to me and I insisted on writing things down for her but I was left with a certain knowing that she most likely wouldn't follow up. Each to their own, that is indisputable but it does make me wonder. When you're told that you will die from your cancer why not try everything, that's my philosophy anyway and it helps me in lots of ways. It is empowerment I guess and that means a lot to me. I refuse to be passive in anything in my life and I will not give up fighting this disease. I would also take this opportunity to ask anyone who reads this to look into LDN as it really does have amazing properties for all sorts of illnesses particularly auto immune conditions. Anyway, today is a good day and I am very conscious of being thankful for the life that I have and indeed the determination that I have to keep it.

Exploring new options

Remember always that you not only have the right to be an individual, you have an obligation to be one

Eleanor Roosevelt


I had a very encouraging meeting with my oncologist on Tuesday. She went over the scan results in more detail and they were more positive than first appeared. One of the tumours they are pretty sure is necrotic. This means that the tumour rapidly outgrows its blood supply, resulting in tumour cell death. This is good and bad as far as I can gather. Its good in the sense that what appears to be the tumour growing on the scan is more likely the dead cells. It's bad in the sense that it is very aggressive cancers which result in tumour necrosis. I am currently going with the good. The other tumour has grown by 2 mm which my oncologist says is negligible and the other tumours are still responding to chemo. I think that's a pretty good result all in all. I am therefore going to continue with my current chemo regime and I will be meeting with a thoracic surgeon in the next few weeks to look at possible lung surgery to remove sections where the tumours are. It is a fairly big operation and I will keep an open mind as to what the doctor has to say. If it gives me a chance to stay alive longer I will of course gladly sign up. I am also going to be meeting with the doctor who will advise me on Radiofrequency Ablation. This is keyhole surgery and would therefore be my preferred option. To have these potential surgeries open to me is amazing and I am feeling positive. In 16 months there has been no new evidence of disease, this is encouraging and leaves me hopeful. It reminds me of why I started this blog. We must not be defeated by statistics. We must find strength to fight for our own lives and we absolutely must always see ourselves as individuals. Only then will we believe we can overcome anything.

A new challenge

If you don't get everything you want, think of the things you don't get that you don't want. 
 
Oscar Wilde



Well I got my results of the scan. I had prepared for the worst and was still hoping for the best. I got something in between. The great news is that I have no new signs of disease, so it has not spread to other parts of my body. The not so great news is that unfortunately my chemo doesn't appear to be doing the job that it was doing anymore. 2 of my tumours are starting to grow again. It's assumed that these are the tumours which were originally found 16 months ago as it makes sense that the older (wiser) ones have learned to fight against the chemo. They are still small but for how long? I am disappointed as I was hoping to continue with my existing regime and essentially eek out more time on one of my lifelines. The list of drugs which can be used is by no means endless and it feels a bit like ticking one off and taking a step closer to death. However, I am determined not to get too down about this as it also potentially opens up other doors. I was told back in October that because my tumours were so small that it would probably be difficult to have radio frequency ablation. So in  a way you could say that this little growth spurt now enables me to become a candidate for this treatment. So maybe I should be thankful for it (every cloud...). I have also started the LDN and within just a few days I have a noticeable difference in my joint and bone pain, wow I am hoping it is having the same effect on these bastard tumours, who knows. All I know is that I am merely going to view this is a new chapter in my life with cancer. I am seeing my consultant today and we will discuss the next steps. The road is still (fairly) long I think. All I can do is travel that road one day at a time.

Other options

"Try and fail, but don't fail to try"


Stephen Kaggwa


.I haven't written for a while and the reason is basically that I haven't been feeling as positive as I would like. My mood has been low and I am filled with fear as I approach my next scan. That day is tomorrow and I will probably have my results by the end of the week. I am, in all honesty, terrified of what it will show. On a good day I think of a positive outcome and brace myself for a less than positive one with the attitude that I will just go on to a new chemotherapy and that will be that. On a bad day I can barely get out of bed and I want to hide away from the reality of my world. I think that for most of us the thought  or idea of waiting to be given news concerning cancer and a possibly bad prognosis is high up there on the list of the events  that we don't want to experience. When we see it on tv or in a film its a kind of uncomfortable moment of hoping we are never placed in that position. That's my experience anyway. So it's no surprise that I am struggling psychologically with going through this for the eighth time. I'm exhausted, mentally and emotionally. Last week I couldn't see the point to living like this. I think I said to my counsellor I can't go on waiting to be told I'm going to die. That was truly how I felt. Having been in a very dark place lately, which culminated in me voicing thoughts on ending my own life, I had to take action. I cant live with cancer without hope, I simply can't. I have, therefore reinvested myself in finding hope. I have been doing a lot of research for months on my type of cancer and I have found several routes to be examined. One of particular interest to me is a drug called Low Dose Naltrexone. I read about this in relation to my specific type of cancer in a medical journal a while back. On closer inspection of an abundance of data, I found that this drug has been used off license to treat all types of cancer. It has very strong anecdotal evidence to support its use but has never been clinically tried for cancer, as some would argue there is no financial gain for the pharmaceutical companies (the drug has long since been patented). It has also been successfully used to treat other conditions including MS and HIV. My GP has agreed to prescribe it for me (its also cheap) and I will start it this week. I am not putting all of my eggs in one basket with this drug and I shall continue to follow the advice of my oncologist and no doubt continue with chemotherapy, however I am making a leap of faith and giving something else a go. I am essentially refusing to give up on myself. I have started this blog with a view to sharing with others the idea that they should not rely solely on the NHS, we all have to be vigilant of our own health care. It's up to me to live by this as much as I possibly can, its my duty to take action. I start my new drug tomorrow, I'm hopeful and I will update accordingly.