We are now into April 2024. Those first few months have been a blur! The lighter nights are returning and the sun (when we see it!) is getting warmer.

I thought I would touch base with you all as it has been a while!

So far 2024 has been good to me. I had my MRI and I am still stable with no further visitors! My PET scan also shows I am still NED (no evidence of disease). I have now been NED for 14 months. 14 months I wouldn’t have had and I still have that next chemo drug on my list. The drug that got me here, Enhertu, was brutal! And also gave me Interstitial Lung Disease. Whilst this will never go away either, it has not progressed and I remain stable but still on steroids. So this has been a good year so far for me.

However whilst I remain well, I feel well, it’s not the same for everyone. I met a couple I know recently who are an amazing couple. They haven’t had things easy and I have always admired them. But I found out the husband had also had cancer. Why? One of my favourite cooking duos Dave Myers from The Hairy Bikers died after fighting for 2 years. Why? The King has cancer and now the Princess of Wales. Why? Cancer does not care who you are, how famous or how important you are. There is no reason. No explanation. 

I have now been living with stage 4 cancer for 4 1/2 years which is pretty good if you look at statistics – which I don’t! They are so bloody scary if you do! They are out of date and everyone is an individual and everyone responds differently. I am on some Stage 4 forums and there are ladies who are still fighting 10 years and more. I am so thankful I am still here and I am aiming to celebrate my 60th – which is 6 years away after this birthday! Why shouldn’t I? Medicine is changing and advancing all the time. If I think about it too much it is too scary and overwhelms me, so live in the moment, in the here and now and take it a step at a time.

On a happier note my baby girl gets married in 41 days! I cant believe that the day is almost here and I am seeing her marry her soul mate. I couldn’t be more proud. My sister is coming over from Cyprus for the Wedding and what a Wedding it will be!!

‘Make every second count. For tomorrow is not promised. Live in the moment’.

So my favourite time of year has arrived and it is almost over – in the blink of an eye. My last scans have all confirmed that I am still in remission! So apart from dealing with one little brain tumour in July, I have had no cancer activity in my liver or lungs for almost a year. My lungs have improved although I’m still on steroids 7 months later, and I have the puffy face to go with it! So this really is ‘the most wonderful time of the year’!

2023 has been an extra year that I may not have had as I still have that extra one chemo on my list. My next scans are in February and and no one knows what tomorrow may bring, but I will never lose hope and as we approach 2024, I do so with a happy heart and I will deal with whatever it may bring.

No one can ever explain the overwhelming love you have for a grandchild. Raya is my sunshine on my dark days and everything is right with the world when I am with her. There is nothing like enjoying Christmas than experiencing it through the eyes of a child and what a truly magical time it was! I’m absolutely shattered, but it was so satisfying sitting down at the dinner table surrounded by my family – we ate, laughed, chatted and yes, after a long time of not being able to cry – I shed a few tears. I am so thankful to have had this special time with my family and as we prepare for 2024 I look forward to many, many more.

This is a short and sweet blog to finish off 2023. I am in a good place – but I am always conscious of those who are not. Unfortunately my brother-in-law begins 2024 undergoing cancer surgery and treatment himself for the second time – so my sister is dealing with both her sister and her husband going through this dreadful disease – BUT – I know we will all be OK and get through it. We are a strong family and we will deal with whatever 2024 brings us. Always believe, in faith, hope, love (and the dedication of medical research!)

I will see you all in 2024. A new year, a new chapter, new beginnings. Time to let go of what is past, appreciate what you have, and look forward to whatever 2024 may bring.

We have had some amazing weather since June time with high temperatures, lots of sunshine and time with family and friends making memories. Now we head into Autumn, spiced lattes and pumpkins, and am I allowed to mention the ‘C’ word yet?!! – 94 sleeps – that’s all I’ll say!!

Anyway, moving quickly on! Since I last updated, I have had my appointment with Respiratory regarding my lungs, and my routines scans. My lungs are still functioning well and I am on long term steroids. I have a home respiratory kit to self-test once a week and send the results to the hospital. Its very clever! I have put on a stone in weight which I am not happy about and it’s just won’t shift, but they are helping me breathe, so this should be the least of my worries! But it does matter!! My wonderful, previous choir master said ‘forget the weight, it is only the vehicle that houses the wonderful you’. And this somehow struck a chord with me. (No pun intended!!)

The anxiety coming up to my scans never gets easier and this time round it was harder due to having been off chemo for 12 weeks. I had my brain MRI first and unfortunately a wee unwelcome friend had popped in to stay for a while. I had been stable for 18 months – which in the words of Dr Herbert was ‘a good run’, so back to the head cage and gamma knife treatment I go! It was only 3mm but it doesn’t matter if it was 3mm or 30mm – it was there!!

I have had this done now a couple of times, so I knew what to expect, but bloody hell, this time it was so painful it almost took my breath away. I couldn’t help but cry. When I had calmed down a bit , I went back into the waiting room where Neil was. He took one look at me, and I burst into tears! I was aware of a slightly older lady also there with her two daughters. She had a large recent scar on her head, and I thought that if she was having this cage fitted for the first time and I’m a crying mess, it could make her even more anxious/scared. I apologised to them, and one of the daughters said not to worry and handed me a tissue! We then made jokes about medieval torture devices and Hannibal Lecter!! She wasn’t having the cage!!

Treatment was fine and only took about 10 mins. I have my next MRI in October, and fingers crossed the treatment has worked and I am stable again.

The following week I had my PET body scan. I was sure that if the cancer had come back in my brain, then it was bound to be back in my body. As we waited to see Prof Bahl, he looked at me and said he would be with us in a minute as he went towards the chemo suite. I said to Neil it was bad news as he was going to get a nurse as he didn’t like it when I cried!! So I readied myself. How wrong was I?! The results were great! Still no evidence of any cancer, and my lungs had improved. So I am to stay off the chemo and on the steroids and see what happens after the next scan.

I know that I will never be cured and that the cancer will come back, but for now, I’m OK!

Neil and I are currently on holiday, having some much needed R&R. We have had a wonderful relaxing time and back next week to normality. And the scanxiety begins again!

‘Sometimes, a fight you cannot win is still worth fighting’ – Gene Leun Yang

We are almost half way through 2023. It is a year so far that has given me good news regarding my cancer – I have been NED (no evidence of disease) since January 2023 and remain so and my brain is clear and has been for 16 months. So why have I not been ecstatic or shouting it from the rooftops? These last 5 months have been tough on me both mentally and definitely physically and this is the other side of chemo.

All drugs, even your over the counter drugs have side effects. I had my first lot of chemo in 2005 when I was 34. I didn’t really suffer badly from side effects apart from losing my hair and I have been fairly lucky in that respect for all following chemos – except this one! Enhertu has been brutal. It may have got rid of my cancer for now, but sometimes you need to ask – at what price? Some of you may find that difficult to understand – I am cancer free, that’s what you want, but let me elaborate!!

I started enhertu in September 2022. I noticed over the coming months that my eye sight was deteriorating so in January 2023 I went for an eye test. My last one was in August and my eyes were healthy, and although I need lens/glasses to see, everything was good! Now 6 months later they told me I had two cataracts, one in each eye and needed surgery. I am still too young, (so they told me!) for the age related cataracts and mine had been caused by a trauma – very possibly chemo, which makes sense when you think about the timing of this new chemo. I had my first cataract op done 4 weeks ago and I am now waiting for my left eye to be done.

The list of side effects that come with your chemo guidelines can be as long as your arm! And when I hear of what some other ladies are going through I still feel pretty lucky but it’s not easy. Another ‘nasty’ side effects that enhertu can cause is ILD – interstitial lung disease which can be a serious life threatening condition. In my PET scan in April they found no cancer but there was scarring in both my lungs. As I didn’t have any symptoms it was decided to continue as normal and have another scan in 6 weeks. I had another infusion of enhertu and then I had my first cataract op. I had a week off work to recover from the op and on the Monday I noticed that I was becoming out of breath even walking to the kitchen. This got worse over the next 3 days where I couldn’t catch my breath, I couldn’t breathe deeply, I was coughing and couldn’t even turn over in bed without coughing and finding I really was struggling to breathe. So I am now on a course of steroids which have helped with my breathing, thank god, I didn’t have my next infusion and I am now waiting for my PET scan and we shall see what the results say on Wednesday. So its all very well being cancer free but if you can’t breathe that’s a whole new set of problems!! So it’s put me in full remission which is a dream come true but given me something potentially as life threatening – if not more so, instead.

Apart from these two pretty major side effects I have also had awful mouth ulcers which have meant I haven’t been able to eat. I also had no appetite so I didn’t want to eat anyway. This was great for weight loss but it was a bit of a drastic way of doing it! It also gave me constipation – I won’t elaborate here!!, I lost my hair – again, and I need 3 teeth repaired!! Oh the joy!!

So now the results are in. I am still in complete remission which is bloody fantastic news but it has confirmed that I have interstitial lung disease. So what now? In a nutshell I am not having any more chemo for the time being, I’m being referred to a respiratory specialist and my next scan in two months. I’m still on steroids. With not being on chemo it is a concern and a worry that the cancer will now return but until I see what the specialist says this is the best way forward. The girls are scared and upset, it’s as if we are in limbo, but there is no way that this is the start of the end. My gut feeling is good and I’m just too busy to go yet!! This is not me being blase but what I really feel and believe. People don’t like me talking like this but at times we do need to be realistic. In the words of Dame Deborah James (BowelBabe) ‘its a positive but realistic perspective of my situation’. There will come a time when things won’t be so good but that time is not now. It is a lot to process and I would be a liar if I didn’t say that in the back of my head I am scared but I have to believe that there is hope and it’s not my time.

My sister recently said to me that it would be wonderful to wake up one morning and be ‘normal’ but on the flip side of this I said we wake up and have another day.

And to end with my favourite and most inspiring quote by Albus Dumbledore!!

‘Happiness can be found, even in the darkest of times, if one only remembers to turn on the light’

Its been a while since I last wrote in my blog and I am sorry I have been away for so long. Somehow I have lost my mojo! I have had no energy, no motivation to do anything and I haven’t wanted to do anything, go anywhere or speak to anyone.

A recap from Christmas, although it seems strange to talk about it when it was almost three months ago. Anyone who knows me, knows that Christmas is my most favourite time of year. I have always tried to make Christmas a very special time of year right from when the children were wee, to now when they are 27 and 25 and now that I have my beautiful granddaughter the magic has become even more alive again even though she is still a wee bit wee to understand it all!

This was my 4th Christmas since my stage 4 diagnosis in July 2019, 3 years 7 months ago, so each Christmas becomes more special than the one before, making memories for my family to cherish and remember.

My sister came over to visit us at the end of November which was just lovely to see her and spend some quality time. Whilst she was here, I had my MRI brain scan results which showed that everything is stable – no change, nothing new! God I was so relieved. I will now have my scans every 4 months which is a positive. My next scan is due at the end of March. I have now been stable for a year. However, my liver remains another story.

I have had 5 cycles of my new chemo drug Enhertu and had my PET scan at the beginning of January to see if the drug was working and my liver was responding. This is my third line treatment – and I don’t know how many options I have. Every time I have a change it is one more option that has been taken away but there are new treatments becoming available all the time so you must always have hope. It would be so lovely to have positive news at the beginning of this year, my overall situation hasn’t and won’t change but it would be lovely to start on a positive note – but you know I will deal with whatever happens. I never make New Year Resolutions but my ultimate goal for this year would be to reach NEAD – no evidence of active disease – to go into full remission – even for a little while. And why shouldn’t it happen to me? But if it doesn’t hopefully the next treatment will keep me going and give me the chance to have another wonderful Christmas 2023. Well I received my results and I am so pleased and relieved to tell you that the cancer in my liver and lungs is completely undetected. What an amazing result! I am cancer clear – for however long that might be. What an incredible start to 2023. I have now had 7 cycles with my 8th due on Wednesday and my next scan is at the beginning of April. So I should be over the moon – so why am I am feeling so low, so despondent, so unmotivated??

The most important thing to me is for me to continue to keep well not only physically but also mentally. I have always believed that a positive mental attitude is very important to me in my continued journey and whilst I have been in this strange phase I have questioned my positivity – but I am not looking at this with doom and gloom or with a potentially bleak outcome. I just don’t know why I have been feeling like this. It is hard to be constantly upbeat, smiling and being positive, telling everyone that I am fine and everything is going to be ok. But sometimes it is easier than telling people how you actually feel. To be honest I don’t even really know how I feel. People then don’t know what to say and I feel it puts people in an awkward position and promotes sympathy which is something I have never wanted or looked for. Maybe this is me having some down time? I just wish someone would could give me a hug, hold my hand and tell me that everything is going to be alright.

‘You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared, or anxious. Having feelings doesn’t make you a ‘negative person’. It makes you human.’ (Lori Deschene)

After my ‘blip’ I told my nurses what happened and to say they weren’t very happy with me for not telling them straight away is a bit of an understatement! I had a week off work, but I ended up having lots of tests, blood tests, MRI, ECG to see if I had had a TIA (mini stroke). It wasn’t restful and was in fact rather stressful and I was glad to get back to work! It never crossed my mind that something like that could happen to me, and it did frighten me a bit, so it had to be checked out due to my reaction and I am very thankful to say that it wasn’t a TIA or a stroke.

I had my second infusion of Enhertu and was somewhat apprehensive while I waited to see what – if anything was going to happen this time. Day 5 came and went so thankfully the first reaction was hopefully a one off. However, this time the fatigue was overwhelming – I continued to work and go about my life as best I could but I looked unwell, I was absolutely exhausted, I didn’t want to speak to anybody, and I did everything at a very slow pace. This began on day 3 and lasted almost a week. Then I seemed to turn a corner and gradually became stronger and this last week I am me! I feel good, happy, well, not exhausted although the tiredness remains, and I have even put some makeup back on!! I feel like the old Ali and it has been a good few weeks since I last saw her!! Maybe this will be the pattern that this new drug will take. I can cope with one bad week as you can plan your daily life around this exhaustive time – and so with my next infusion this Wednesday we shall see what happens this time.

And now for one side effect I only half expected was complete hair loss. I knew my hair would thin but whilst I was in the shower about 2 weeks ago it was like cousin It and me!! This was more than hair thinning! So now I have a close number 2 and we will see what happens. I have lost my hair 3 times before, so it is not a real upset this time, but it is the visual element to others. While I start wearing my hats again it is an outward show of what I am going through, and I don’t want peoples’ pity or anyone feeling sad for me. I am not ashamed of what it represents, of what I am battling on a daily basis, but I am proud to be ‘bald’ and living my best life. I will keep fighting with faith, hope and courage.

One of the things that cancer patients dread is being told that their treatment has stopped working and there is progression and so you go on to the next option, treatment/chemo drug available to you. Well, this is where I am at. My recent scans showed that I have a new liver tumour and the existing two have become more active although they haven’t grown. So that is positive news but the fact that they have company is not so good!

Thankfully there are still several options for me and the one my oncologist is favouring is a chemo drug called Enhertu. This is now my third line of treatment and started on Wednesday 28th September 2022. So back on intravenous chemo. All chemo drugs have their side effects, and this one is no different. Everyone reacts differently – up to now I have been very lucky in that I haven’t really suffered with too many side effects and hopefully this will continue. Complete hair loss is not one of the major side effects so hopefully I will have hair this Christmas!!

Things were going well until day 5! I had some kind of a reaction to the drug, or perhaps it was just a blip, but it was a very unpleasant experience – one I wasn’t expecting and one I don’t want repeated! I became very hot, clammy, sweaty, disorientated and my breathing became laboured and slightly erratic, and I felt like I was going to pass out. So, Neil came and collected me from work and brought me home. It took almost the whole week to feel back to my normal self, but I am now fine and feel as if nothing happened! I suppose I needed the reminder that I am not invincible! and that I am human, someone living with a life limiting illness and whilst these drugs are helping prolong my life they do come with their own set of problems! I still feel incredibly lucky and hopefully it was only a blip, but we will see what happens after my second infusion next week. At least I will be prepared and know what to look out for should this become a regular ‘blip’.

“I’m under no illusion about my situation, but to be limited by it isn’t an option either” (Kris Hallenga)

Everyone deals with their own situations in their own ways, and I am no different. I know that over time I will have to change the ways I do things – but for now I am well and whilst I can control what I do, and I can do it – I will. I do listen to my body and take time out, rest etc when I have to, but whilst I am in control, I will carry on like I always have. People say I am ‘amazing’, but I’m just me – I need to continue with my ‘normality’ and keep that control whilst I can. Perhaps that makes me seem like I’m ‘amazing’, or perhaps I am being ‘naive’ or even ‘stupid’ but whilst I can – whilst I am able to do so – I will carry on.

‘You may see my struggle, but you will never see me quit..’

Hi everyone – I’ve had some time away recently but I’m doing okay and hope you are too.

A quick recap – I have had some more brain treatment done back in January for 3 more wee tumours they found. I didn’t have to wear the cage this time thankfully so just the really tight face mask which my oncologist said after that I looked like a waffle!!

I started a new treatment just before Christmas and when I had my body scan in January just 3 weeks later I had had a really good response with shrinkage to my 2 liver tumours and the one in my lungs. So that was really positive. The new drug is just recently licenced and apparently my oncologist said that I was the first patient in the South West to have it!!

Scans in April still showed stability which was fantastic news as I always dread this time and now in June we are fast approaching that time again. I hope that the treatment is still working its magic and I remain stable but as always I will deal with it if it is not.

This is me today wearing my new ‘Rebellious Hope’ T-Shirt. There has been a lot in the news lately about Dame Deborah James and her journey which is so full of inspiration, hope and of course sadness. You cannot get away from the fact of what comes when there is no more that doctors or modern medicine can do you for you and it is so unfair – Cancer f****** sucks. Yesterday a friend on a Facebook support page told us that she is beginning her final chapter and that she is calm and at peace and is going to enjoy every moment left. She told us all to laugh, dance and make beautiful memories with those we love every day. I admire her bravery and her honesty but I cried, not only for her, but selfishly for myself. This is a chapter I still don’t want to write but with stable scans and medication still having a positive effect on my cancer I plan and hope to be around for many more years.

Death is a subject we do not like to talk about but happens to us all. This is the one thing we can all be certain of – but we just don’t know when. So it is a subject that we shouldn’t shy away from. When I was younger I used to be really scared of dying – I don’t really know why but the thought of there being nothing frightened me. But when you are suddenly faced with the harsh realities of life you start to look at things differently. My oncologist even said to me that he couldn’t tell me how long I had, no doctor can, only God knows. Since this became a closer reality than I would like, my faith has continued to grow and after speaking to my cousin, who had a horrific motorbike accident in Ireland and was about an hour away from death – it wasn’t his time, I have found comfort in our many chats. My daughter also me that your body is only one part of who you are, you have memories, thoughts, your spirit/soul, and this has to go on to somewhere.

I am having a hard time with this at the moment, I am no longer scared but sometimes I have this overwhelming feeling which is all consuming of dying. There it is – in a nutshell. I’ve said it – well, written it down! It is always with me and I don’t know why it is so much in the forefront of my thoughts. I am stable, I am feeling really well, I am only on my second line of treatment, but yet I can’t seem to shake of this new ‘friend’ who seems to have an attachment to me at the moment. But life it strange, and life goes on and will continue to do so even after all of us are gone. I’m not being morbid, and I am not looking for any pity, that is not what this is about, but it is about facing what is a reality for us all and not being afraid to express our thoughts.

Live every day. Be thankful for every day and no matter how hard it might be I will keep fighting, keep smiling and keep being me. And in the words of Dave Allen – ‘May your God go with you’.

What is chemo brain? – the proper terminology is Cognitive Impairment.

During chemotherapy and sometimes after treatment has finished some people find it difficult to concentrate or feel more forgetful. This is sometimes referred to as ‘chemo brain’ or ‘chemo fog’.

It usually improves over time after treatment has finished but it can be very frustrating and have a big impact on daily life.

Although it’s commonly called ‘chemo brain’, some people with cancer will experience changes to their memory and concentration even if they don’t have chemotherapy. This is why your treatment team is more likely to call it cognitive impairment, cognitive dysfunction or cancer-related cognitive change.

It isn’t known exactly what causes changes to memory and concentration following cancer treatment and more research is needed in to finding the cause.

Symptoms can include short- term memory loss, finding it difficult to find every day words or forgetting the names of familiar things and finding it difficult to remember things to name but a few. These can affect your daily functioning and cause you to question what you are doing.

‘Chemo Brain’ affect me on a daily basis and to be honest I get really frustrated. I can concentrate and focus and continue to do my job well but sometimes when I am talking about things I will forget simple words or names of things or struggle to get my words out. I will go to do something and literally as soon as I move to do it I will forget what I am meant to be doing. People laugh and I do too to cover up my frustration and embarrassment by saying ‘Oh it chemo brain!’

This is my third time going through Cancer but this time my memory and ‘chemo brain’ has had a much bigger effect on me. Some say it can be age related and things like the menopause can make it worse but as I mentioned there is no real known cause why it happens and who it affects.

There is no treatment or ‘medication’ you can take to help the symptoms. There are things you can do like keep a diary or set reminders for things on your phone. Relaxation and practicing mindfulness can help as if you are stressed or anxious this can also have an adverse effect but in the cases like myself forgetting the name of an item or not being able to get my words out there is nothing that can help except allowing myself some more ‘thinking’ time and asking people to give me a moment. I get frustrated and sometimes annoyed at myself and I have found that the more I try and the more I rush my thinking it makes it worse, especially if I am mid conversation with someone.

So if you happen to be talking to me and I look a bit vague or pause – just give me a minute!! I always get there eventually!!

People often say they are tired but when you have cancer the tiredness or fatigue is different and in many cases can be one of the most debilitating side effects and can last a long time.

Cancer related fatigue can affect you physically, emotionally and mentally and doesn’t go away with rest or sleep and varies from person to person.

Everyday life can be hard work and you might not have the energy to cook, clean, bathe, go shopping or even get out of bed. You might not even feel up to a chat. Things that you used to find second nature or easy are now a task and can be hard work.

To be honest I have found things quite difficult over the last couple of months and for those of you who know me well I continue going until I have to stop – or my body stops me doing what I need or want to do! SO this happened in September and I had to take 3 weeks off work – something which I hate doing. I dont want people to think I am having a jolly (Raya had not long been born) or skiving as I dont like to let people down and I dont want to give in to Cancer – but sometimes I have no choice! I am not physically ill – like I dont have the flu, I am not throwing up etc but I was physically shattered and not in a good place psycologically. My oncologist ‘reminded’ me of my situation and he said to me that he doesnt know many people in my situation who still work full time and do what I do!! He also reminded me that if he needed to he would write to my occupational health to say that I should not be working if things got to a stage where he needed to intervene!! So it is all about that cliche ‘work/life balance’. Since then I have had time to reflect and evaluate.

It is important for me to be able to control this side of my life – when I work, what I do and how I do it. This is my normality and it is something that I can control. I cant control what the Cancer is doing but I sure as hell wont let it take control of my life – until I have no option – which I dont plan on doing for a long time to come! However I am constantly tired and sometimes end up in bed at 7:30 pm. Sometimes I really struggle to get out of bed, get dressed, or even speak to anyone and sometimes I just want to hide away. I am not as social as I once was and I think some friends have left me alone because of this. I sometimes feel incredibly lonely but I do as much as I can, as often as I can which is why I sometimes crash and burn!! So live life to the full – decide what and who is important to you – because you never know.

I am now off to bed!! I’m a tough cookie – apart from the Cancer – I am fine!! Good night all. xxx