August 2020

So August has seen the return of Ali in to the big bad world!! I have had my nails done, my hair cut and celebrated with going out for dinner with good friends. I have also been able to do my own shopping!! – which felt strange but I wasn’t unnecessarily worried, just wary. I am hoping to return to work in some kind of capacity come September – so normality is resuming.

When I had my last treatment there was a lady who had had her last cancer treatment and ‘rang the bell’. It was a bitter sweet moment. I was so pleased for her that she is free of this dreadful awful disease and a moment of reflection that I will never ring that bell. I’m not bitter, nor begrudge her or feel why her and not me. It’s the way it is.

August marks the three month point and time for all my scans etc. I had my MRI scan done and results on Tuesday 18th August 2020. Of course I was worried about the result but not overly so as these results would hopefully tell me if it was scar tissue or if it was the tumour growing back. My consultant phoned me and said that the main tumour site was stable, horray, but they have unfortunatley found 2 new tumours at the back left hand side of my brain. Well – I wasn’t expecting that! We didnt really talk about the 0.5 mm change so I am assuming that this must have been scar tissue as the site remains stable and that’s good news. And so to the 2 new ones. They are very tiny apparently and he is fairly confident that he can get rid of them, so again this is good news. The bad news is that they are there at all!! They are doing gamma knife treatment next Thursday – so thankfully not long to wait. The other bad news is that I have to have the head frame which is screwed in to my head. I’m not exaggerating! – this wooden and metal frame is attached to my head to keep it completely still whilst the treatment takes place. The tumours are so tiny there is no room for error so this cage completely immobilises my head. I also have to go on my own due to covid restrictions so I will have to ask the nurse to take a picture of me so I can show you all!! I would prefer if Neil was with me but in a way I am glad that he can’t come as I don’t want him or the girls to see me in it. Although I will show them the photos!! I remember my consultant saying to me in the beginning that it looked like something they would have used as a part of medieval torture so I’m really looking forward to that!! I have had a covid test done, and it wasn’t as uncomfortable as some people have said, infact the nurse and I ended up in fits of giggles! I have to self-isolate until my treatment date – I have my PET scan on Monday but that’s okay. That date has been changed once so I am not changing it again!! I will get these results on Wednesday so another big week next week. Scan, results and treatment. Bring it on!!!

How do I feel? That’s a good question!! – I feel numb – I am more worried about having the frame fitted than I am about the new tumours!! I have said before that I have struggled over these last few months and a lot of it is has been because I feel completely detatched from my emotions – I can’t cry – I was always a cryer – I would cry at silly adverts, films, the silliest of things, I would even cry when other people cried! but yet when I was told I had cancer, or that I have two new tumours – there was nothing. Why can’t I cry? Why don’t I ‘feel’ anything? Is this normal? Is this my way of coping? Or am I just becoming a hard bitch?!! I don’t know. But with the help of an amazing counsellor I am starting to work through things and feeling brighter and stronger emotionally every day. This is my life now – cancer is with me all the time – it’s like that friend who hangs around all the time that you don’t really want!! I don’t want to spend my time living from scan to scan and worrying all the time about the what ifs, and buts – Cancer if part of my life and I am going to embrace it. I am Ali – that’s all – this is me.

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One Year Anniversary

On 5th July 2019 I was diagnosed with a brain tumour. And what a year it has been!! 7 MRI scans, 1 CT scan, 4 PET-CT scans, 1 biopsy, 3 sessions of gamma knife, 4 ECHO scans, 4 cycles of chemotherapy and 16 cycles of Herceptin and Pertuzamab so far. 121 days of isolation. 674 days since I had my last alcoholic drink and approximately one year since I became a vegetarian. WOW!! Quite a year when you write it all down!!

 My last lot of scans were in early May and to be completely honest it has been a difficult few months. It is hard not to worry about the what ifs and not to look to the future even a year down the line  – no matter now much mindfulness I try and put into practice!! This journey is certainly a roller coaster and you have to ride the ups and downs along the way. Over this lock down period there have been more downs but over the last couple of weeks I have begun to feel a little stonger.

Its hard to share your inner feelings with family and loved ones. They worry enough about you and sharing those inner feelings, insecurities and worries is hard. I struggle because I need to say certain things, have someone to listen to me and not be emotionally involved, to understand what it is like. So I have decided to see a counsellor – someone that I can off-load to without upsetting them. There is nothing wrong with asking for help and to realise that you are not superwoman – you can’t do it all on your own all of the time. And I will come out stronger for it in the end.

 I have been experiencing some headaches, light headedness and some disorientation  since my last results which showed a change of 0.5 mm and I hadn’t had or noticed any ‘symptoms’ in the previous 3 months. So is it tumour growth, is it scarring or is it just my norm? I have scar tissue in my brain and whilst they have kept it to the minimum by doing the gamma knife there will still be damage around the area of the tumour which can cause it’s own set of issues. That’s the uncertainity – noone can tell me at the moment so my next scans are in August and for the first time I am actually not worried about them at all. I will have a better idea of what I am dealing with and I can move forward. So roll on scan time!!

The lockdown restrictions are becoming less for people in the extremely vulnerable group. I can see up to 6 people socially distanced and in a few weeks I can go back to work and things are returning to ‘normal’. I have been out about 3 times since things are relaxing! It is so strange – for the last 15 weeks all I have wanted to do was to go out etc and now that I can – I don’t really want to!! I’m not worried about catching covid-19 (I never really have been) but my world has been within my own four walls for quite a while now and I don’t know if I am ready to rejoin the world again!!

We have all made sacrifices to keep ourselves, loved ones and the vulnerable protected, and we still are. There is still no cure, no vaccine, but I have to let myself get back into the world, I want to get back to this new normal, with whatever precautions necessary. A little at a time – Stay safe everyone. ❤😷🌈

 

 

 

 

Scans, Results and Reality..

So  it all happened in May! I turned 50!! Bloody hell how did that happen!! I can’t believe it!! Where has the time gone – literally! I don’t think of myself as being 50 and I don’t feel 50 – but what should it feel like? Age really is just a number these days and people are generally living longer. When I was younger I never wanted to get old! We thought 50 was ancient! and being 50 years old was a life time away, but now here I am embracing my 50th year and hoping I will live forever!! Lots of people have celebrated their birthday’s during lockdown and my family and friends really did go over and above to make it memorable. I was quite overwhelmed and had a fabulous day. One I certainly won’t forget – thank you to everyone who played a part – I love you all!

I also had my scans in May – it is now 9 months since my gamma knife finished (10 months since I was diagnosed with my brain tumour) and 6 months since my chemo finished. It is hard to believe that on the 5th July it will be a year since my diagnosis. Something my brain consultant said right at the beginning of my treatment is never far from my mind. He told me that 60% of tumours grow back within the first 6 to 12 months. The percentage of those that don’t go grow back was much higher than I expected and why shouldn’t I be in that percentage??

Another trip out and this time in to Bristol to have my MRI scan done. My consultant did my results appointment over the phone due to the covid-19 situation and it wasn’t quite the news I was expecting. I have had no dizzy spells, no balance issues and no headaches. In the past 3 months I have felt (and still do) really well and so expected my results to be the same as 3 months ago – with no change. However, he told me that there had been a very slight change of 0.5 mm. This is tiny, I tried to measure it, but when it comes to tumours any change needs consideration. He said that this is the time they expect to see changes but he is unable to tell me if it is the tumour regrowing or whether it is scar tissue.  He said that there is nothing to worry about at this time and so the plan is to monitor and re-scan in 3 months. So it is not bad news just more uncertainty. So my next PET/CT was next and to be honest I was worried about this. I have had a lot of pain in my shoulder joints, upper arms and I don’t have the same strength as I was once did. It was painful to lift my arms above my heads, taking the tops of jars and even turning over in bed, so of course in true Ali style I had been researching bone cancer – as this is one of the more common places breast cancer can spread to. Once you have had or have something like cancer it can be easy to think that any twinge or pain could be related to it and despite my positive, fighting outlook on my cancer I can be quite a pessimistic person!! I call it being realistic!! But I only had to wait 2 days to hear from my oncologist and he phoned last Wednesday. He told me that I have continued to maintain a full metabolic response with no evidence of any metastases to the bones. Well this was amazing news and I was so relieved that the pain I had was not due to me having developed bone cancer. I was still okay and everything in my liver and lungs is fine and all my blood tests, cancer markers etc are all within normal ranges. So the pain in my shoulders etc. is still unexplained but probably related to the menopause, treatment side effects and getting older!!

So what do I do? Do I spend the next 3 months wondering, worrying about what is going on inside my brain? Worrying about the what ifs and might bes? My oncologist said to me a while ago, live for today and don’t worry about the what ifs? And although this is easier said than done that is exactly what I intend to do – or at least try to do. The Penny Brohn approach is very much about living in the here and now which is an amazing philosophy to follow but not always easy to do.  Not to dwell on what may be or what might happen. I could spend the next 3 months worrying and the results could be the same as they are today or things could have progressed. Either way we will not know until August. We do not know how long we have on this earth and I don’t want to waste time worrying about things that I cannot control. So I will try and concentrate on what I can control and that is changing my mindset to living in the present. Enjoying life while I’m in it. While I can. 20200525_202000

Checking in

The last time I updated my blog was 42 days ago – the 22nd March 2020, and was my first official day of isolation – lock down – quarantine – whatever you may call it. My text arrived from the NHS saying that I was in the high risk category of severe illness if I should catch coronavirus and to remain home for 12 weeks. That ‘get out of jail’ date will be 15th June 2020. How bizarre this was. It was such a strange feeling knowing you’re classed as vulnerable yet I am feeling well, I feel great in fact but now everything was changing. My life had changed again by things that I had no control over – it was all very surreal.

My sister said ‘We are all riding the same storm but we are all in different boats’. Which is a good way of looking at it. Everyone’s circumstances are different. Everyone copes with their circumstances in their own ways. Many families are in a similar situation to my own and many families have to deal with a great deal more. People have lost family members and have not been able to be with them to say their goodbyes, family members having to move out of their homes as keyworkers  so they can continue to work and protect the vulnerable members of their family. It is a different experience of us all.

It is good to see that in times of crisis we see many people at their best pulling together to support one another through this difficult period. I have clapped and cheered, shouted oggi oggi oggi!!, and banged my saucepan for the NHS and other keyworkers every Thursday – like so many of us. It brings a shiver every time and I am proud to stand with my neighbours to say thank you – all be it hanging out my lounge window!

I have only been out twice and both times it was for my treatment – I was so excited! I put on something other than pyjamas or joggers!, put my make up on and even my false eyelashes – all for 2 hours of treatment!! Thankfully I am still able to continue with my treatment and all appears well. The nurses are amazing and keep everyone’s spirits up despite having to wear the protective gowns, masks and goggles.

Life continues as best it can. We are getting used to this temporary new normality. But we mustn’t become complacent. It is now 4 weeks since the lockdown was announced and subsequent extension. I am not a politician, doctor or scientist, and I do not want a debate about the rights and wrongs of restrictions and who or how the rules should be followed – I am an ordinary woman who has been forced in to quarantine with stage IV cancer who wants to live life to the full – as we all do – and not to be restricted to my own 4 walls.

This situation has made me appreciate all sorts of things that I would normally take for granted, even the simplest thing as being able to answer your own front door!

It has come up to that time again – the MRI and PET/CT scans. 3 months goes so quickly! On Monday I get to go out again! This time for my MRI scan in town. I am really grateful that this is still able to go ahead and hasn’t been delayed. The result will follow by a telephone consultation with my consultant. Fingers crossed it will still tell that the tumour is non-active and nothing is happening – Scanxiety has been setting in for the past week or so – and I haven’t been in a great place. This scan will be 9 months after my brain tumour was diagnosed and my gamma knife treatment finished. My Doctor said that 60% of tumours come back between 6 and 12 months. I feel really well with no headaches or dizziness and I am being ‘good’ to my body (apart from flipping sugar!!) so hopefully the scan results will be positive. My PET/CT scan for my body is on the 18th May and again I am hoping for more positive news. I will keep you posted!

I am currently writing this sat in my garden. The sky is blue, the birds are singing, dinner is prepared and I am pretty relaxed (for once!) Today is a good day. I am feeling lucky surrounded by people who love me. So guys, feel blessed, we are safe, we are loved.

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It’s a Mad World ….

2020 is under way and spring is beginning to raise its head. You can see the spring flowers appearing and a little glimmer of sunshine giving us the promise of warmer weather to come – but – our lives have been turned upside down and we are in a period of uncertainty and uneasiness.

It is at times like these that you see the best in people but we also see the worst and definitely over the last few days and weeks we are definitely seeing the worst in some. I don’t need to go into detail for we all know we can’t get toilet roll, eggs, paracetamol among many other daily products! Why oh why have people started panic buying? There is no need and their unthinking and selfishness causes panic in others who then try to get essentials – but can’t – and so it goes on. These greedy, selfish people have no consideration for others, and it is the vulnerable and elderly who are suffering the most.

Government guidelines advice social distancing, so why are people still congregating or crowds gathering for example along sea fronts today because the sun has come out?  If people do not heed the advice of the Government to not go out and reduce social interaction the UK could become the next country to go in to total lock down. THIS IS NOT A GAME.

Now I am going to be completely honest but until recently I didn’t really ‘get it’. I joked that I must be living on a different planet! I have been so strong and determined to fight and win against my cancer and because of this mentality I thought no ‘virus’ is going to get me either, but reality sets in for all of us eventually. I am a little concerned – but I am following the guidelines and it has been a difficult decision but I will now be working from home. Of course I don’t want to  but I don’t want to become ill either and so this was a hard decision – and not because I am being selfish or naive but out of a concern for my colleagues who still have to continue in the office. But I am heeding advice and I have everything I need to work from home so we shall see how things go.

My youngest daughter however does not have that luxury as she continues to work tirelessly for the NHS distributing and managing the ambulances on our roads. She has my complete admiration for how hard she and her colleagues work, working long shift continuing to support the vulnerable and by god it is not any easy job. So these greedy, selfish people should spare a thought for the NHS workers who are helping look after YOU when you need them – and that time may be sooner than you think.

Please stay safe and look after one another.

 

j

 

My journey so far …

What a roller coaster … 7 months ago was my 3rd diagnosis of Cancer and since then I have had 6 MRI scans, 1 CT scan, 3 PET scans, 1 biopsy, 3 sessions of gamma knife, 3 ECHO scans (heart scans), 4 cycles of chemotherapy and 9 cycles of Herceptin and Pertuzamab so far.

On Tuesday 12th February I got my MRI results which were really positive – thank god! I was worried as I have been having dizzy spells and I have sometimes been a little unsteady on my feet. But everything is good at the moment. There is scar tissue there and what is left is about the size of an almond. There is no swelling or any activity, but due to the positioning of my original tumour some residual effects were bound to be present, and as my neurologist put it, ‘it was a very large and nasty tumour’. But I am doing really well and I can cope with a few dizzy spells! My next scan isn’t until the middle of May – after my birthday – the big  5 0! – so I can rest easy – for now.

When things are good and life is treating you well you sometimes forget that you have cancer – and then something reminds you, and in that moment the reality hits you again.  After my most recent news people said you must be so pleased, or you must be so happy – and don’t get me wrong, I am. But it is more a sense of relief. Let me try to explain this as to be honest I am still trying to understand why I feel like this myself and how I feel about the whole diagnosis and prognosis.

It is like a never ending circle. I am currently in a place of wellness, which is great and I am so grateful that I am responding well to the medical treatment and to the changes I have made in my lifestyle and I have no doubt that this will continue but when it is coming up to my next scan the what if’s creep back in, the doubts and uncertainties and the worry returns. There is absolutely nothing I can do to change the result of that scan, worrying won’t change anything, so why do I get myself into a state? – Scanxiety, this is the name my friend called it and that is such a good word. It sums up all my feelings in that one word. We are all aware that there is currently no cure for stage 4/secondary cancers, so whilst things are good now, the science says it will come back – it may be 3 months, 2 years, 10 years – who knows. The answer is we don’t. My oncologist said to me to live every day. Don’t worry about the what if’s. And this is very true – but in reality it is hard to live in the here and now without looking ahead to the future but I am getting better at it!!

I am feeling well, my hair is growing back, things are good and I am enjoying life. And whilst I am well and there is no active cancer, it still lives with me every day. It is always present, never far from my mind.  That is why a lot of my recent readings are now based around the Penny Brohn approach to living well with cancer, in all areas of our physical lives but also paying attention to our mind, spirit and emotions. They are all so closely interlinked and they are what makes us – us. More and more people with stage 4/secondary cancer diagnoses are living well and leading ‘normal’ lives. It is important to not only take care of our physically well being but also for our mental and spiritual well being and with both of these working together hopefully I can continue to live well for a very long time.

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A Positive start..

February has begun and Christmas is a distant memory. The long awaited January pay day has arrived and life carries on!!

My first body scan of the new year was on the 20th January. Whilst I remained hugely positive that everything was still okay, you can’t help those feelings of doubt, the fear and anxiety, the what if’s from creeping back in – no matter how hard you try to keep them out. My scan was done, I was radioactive again for a day and then more waiting! You never get used to the waiting. There is nothing you can do that will change the outcome, so why waste your precious time worrying over something you have no control? I can’t really answer that. No matter how positive you are, the fear of the unknown, of what is to come is always there at the back of your mind, in some shape or form.

Whilst I was waiting for my scan I started talking to a woman who was also there. This was her first scan and she was just starting her journey, with many questions and uncertainities. We talked for a wee while and it felt good talking to her, and hopefully it helped to ease her anxiety – even if it was only a little, which is also my aim through my blog – to be open and honest and to  help inform and support.

So I only had to wait 2 days and Professor Bahl told me that ‘there is no evidence of metastases activity’ and I have had a ‘complete metabolic response’. I was so relieved – I have been given another reprieve. He said we don’t know when it will come back – it could be years, but he said ‘don’t take this the wrong way but live for today. Don’t worry about the what ifs’. It is hard not to worry about what comes next but he is right. If you continually worry about the what ifs you are not enjoying what is happening right now, this moment – because you will never get that back.

So a positive start to 2020 and long may it continue.

“Keep looking forward”

Good-bye 2019, Welcome 2020

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Today was my last treatment of 2019 and a few weeks off until my next one.  Another year is almost at an end. Where did 2019 go?! And like many of us this is the time to reflect on what has happened throughout the year. Reflecting on the good, and the not so good; the things that help shape us in to the people we are. As we say good bye to 2019 we place a full stop and turn the page in to 2020, not only a new year but a new decade. We begin a new chapter and look forward to our journey ahead and making many new memories.

As I reflect on what 2019 has been to me it sure has been a roller coaster of a year, but it hasn’t just been all about my battle. I have said a sad goodbye to some friends but also welcomed new ones in to this world. I have met some fabulously inspirational women who are fast becoming friends and I have been overwhelmed by the kindness, love and generosity of people. I count myself a very lucky woman.

And so as my 2019 draws to an end I don’t have any regrets and I don’t feel bitter. I look back and see how far my family and I have travelled and I am hugely proud of them and how they have all dealt with what we face together as a family. I look forward to the next chapter – what will it bring?

I hope you all have a very Happy New Year whatever you may be doing. God bless you all and I will see you in 2020.

Wave a goodbye to the old and embrace the new; Full of hope, dreams and ambitions.

2020

 

Penny Brohn and Living well with Cancer

Penny Brohn – originally known as the Bristol Cancer Help Centre was founded in 1980 by Penny Brohn and her friend Pat Pilkington. Penny was in her early 30’s when she was diagnosed with cancer. She soon realised that what people in her situation also needed, alongside conventional medicine, was “care for the mind, the spirit, the emotions, the heart and the soul”.

Penny sadly passed away in 1999 having lived with cancer for 20 years and her legacy has helped provide invaluable support and care to many.

Penny Brohn UK remains the leading UK charity specialising in complementary care to help people live well with the impact of cancer by offering the Bristol Whole Life Approach. People with cancer and their families can explore which lifestyle is right for them by finding out about eating well, learning simple techniques to help manage stress and discover which physical activities are beneficial. They give people the space and the time for reflection and to focus on themselves. It costs them over £2 million each year to keep their doors open. What they are able to offer is free of charge thanks to the charitable donations and voluntary contributions which fund their work and provide this free service for cancer sufferers, survivors and their families.

I had not heard about Penny Brohn until 2017, and I really wish someone had told me about them during my first cancer journey in 2005. It is the most incredibly relaxing place set in beautiful surroundings. You feel welcome and safe. I attended a 2 day residential course which is just one service that they offer and for me this course was an emotional journey. I came away having made new friends and feeling empowered and new tools to use and take forward. There were 14 of us in the group all with different stages of cancer, including 4 ‘supporters’, being husbands or close friends. There were a few of us with Stage 4 cancer and I was the baby of the bunch after only being on this leg of my journey for 5 months. The women in the group were incredible all with their own stories and experiences. Their humour, insight, compassion, understanding and what has become friendship was refreshing and uplifting. It was a time spent having the freedom to talk openly about cancer and not worrying about upsetting anyone and having a chance to reflect.

Sometimes you need that space for ‘you’. A time to spend with yourself – and how many of us actually do this? A time to reflect on your journey so far. An opportunity to take time out and explore other aspects of ‘looking after yourself’. It is not just the physical, medical side of your treatment but it is about looking after your spirit, your emotions and your mind. It is learning to be in the here and now – enjoying that moment.

A difficult part for me – and it still is for me – is the acknowledgement and acceptance that my time is running out. Time is running out for all of us, which I get told quite a lot –  and it is true, but please don’t be offended by this, its easy for people to say when they are not actually faced with that knowledge.

I should have posted this a few weeks ago but these last couple of weeks have been difficult. I have not been in a great place and this Mrs Claus nearly hung her hat up and became Scrooge!! But my cancer is still at bay, my hair has started growing back and it is 3 more sleeps to Christmas Day!!

So for now – good night.

 

A Time to pause..

Hooray!! It is December, in fact it is 2 weeks till Christmas, so I can finally get excited and talk about Christmas properly without being told its too early!! My decorations are up, I have returned to work and I am feeling really good. My scans are all positive and so everything is ‘good’ for now and I am looking forward to spending a very relaxed, Happy Christmas with my family and close friends.

However for some it is not the ‘most wonderful time of the year’. I always think that loss of any kind is always much harder during this season of festivity, when you are expected to be full of fun and laughter. On the 1st December it would have been a friend’s 52nd birthday who sadly passed away from Cancer in February 2019. Not a day goes past when she doesn’t come to my mind. She was so loved, she was such a fighter and had so much to give.  Another friend lost her mum last week and another lost her partner, and that is just to mention a few.

Death is a part of life. It will happen to us all. We hear about it daily for whatever the reason, be it illness, sudden or unexplained. ‘Death’ doesn’t care of the time of year, and doesn’t care about who you are. For many people it is not something that you need to think about, it doesn’t or hasn’t affected you and I am not saying that you should. But loss always seems so much more poignant at this time of year; the time of celebration and being with loved ones.

So whilst we are enjoying the festive season, including myself, I will spare a moment for those people I know that will find this Christmas particularly difficult and for those I have known and lost. For those I have met and are still fighting.

Christmas is a time for remembering and for being thankful for those you have around you and appreciating the small things. It doesn’t matter about the presents you get or how much they cost, it is about making special memories that no one can ever replace or take away. That is what matters, and that is what is important.

‘May the spirit of Christmas bring you peace; the gladness of Christmas give you hope and the warmth of Christmas grant you love.’