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

So I celebrated my 51st Birthday in May. My girls are now 26 and 23 and my first granddaughter Raya was born 3 weeks ago (7/8/21). When did I become old enough for all this to happen?!!! I still feel young and in fact only recently did Neil say to me ‘You’ve never grown up have you?!’ due to a comment I made!!

I am 51 years young and I am meant to be doing a skydive from 10,000 feet! Unfortunately due to weather predictions it has now been rebooked for the 3rd time on 24th September (hopefully!!). I am raising money for Penny Brohn UK (www.pennybrohn.org.uk). Thank you so much to all those who have donated – and if you haven’t yet and want to help me raise funds for a brilliant local Cancer support charity then please go to my Just Giving Page. (www.justgiving.com).

So what else is new?! We have a new puppy dog – Winston! He is absolutely adorable – he was the biggest puppy of the litter and he has huge paws so he is going to be quite a big springer! But he climbed into my knees and that was it. So welcome Winston! He is now 16 weeks old and very leggy!!

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So what’s new with me? – After my last PET scan i have 2 active tumours and had 3 dormant ones in my liver. The 3 dormant ones have disappeared – which is fantastic news, and one of the active ones has reduced in size which again is also really good news. The other one has grown, so I had an ultrasound scan to plan cyberknife which is directed radiotherapy to the tumour. The radiographer said to me that if he didnt know my history he would say that there is absolutely nothing wrong with my liver! So I waited 6 weeks and just had another PET scan. I have my results on Thursday next week to see what the plan is. I am always anxious around scan times but I am more nervous this time, how can two tumours show up on one scan and not another to the point I’ve been told my liver looks completely healthy and normal! I am still on oral chemo and herceptin. Fingers crossed it will be positive news. Watch this space!!

Have a great Bank Holiday weekend. Another blog is following shortly.

“As one of the oldest medical procedures in the world, dating back 2500 years ago in China, Acupuncture is now established as an essential component in an integrative medicine approach to health and wellness”.

Complimentary medicine includes treatments such as Acupuncture, Acupressure, Aromatherapy, Reflexology, Reiki, Herbal Therapies, Homeopathy, special diets and dietary supplements to name but a few. Whilst science cannot give us a definitive answer on whether complimentary medicine can aid in illnesses such as Cancer there is evidence that working alongside conventional medicine they can help support you and your treatment.

About a year ago I developed an itch on my right forearm which was not like a ‘normal’ itch but one that didnt stop, and it was uncontrollable – I couldnt stop myself from scratching – literally! It felt like sharp electric shocks at times and at others like there were creepy crawlies under my skin. It was awful. I have ended up with scars on my arms due to scratching and rubbing them. There was no relief. I tried literally everything – steroid creams and tablets, antihistamines, aqueous creams, lavender oil, Aloe Vera, daily exfolilators, and a cream from the GP which was made with chilli which was meant to deaden your nerve endings! Nothing worked! The only relief I got was from using an ice pack. When I sought advice from the GP, a locum doctor told me that one of the main reasons for itching on the skin could be to do with problems or disease of the liver and because I had liver cancer there wasn’ t much I could do and it was to be expected. Really not helpful so I did some further research into complimentary medicine to see if there was anything that may help and I came across acupuncture. I didn’t really know much about it except it involved lots of tiny needles stuck in your skin! I hate needles but I was willing to give it a go – at this point I would have done anything to give me some relief. After asking for recommendations on Facebook one lady’s name came up a few times so I phoned and made an appointment. It has taken time and my itch moved from my right arm to my left arm, to my left shin, to my shoulders, but she has definitely helped. It hasnt completely gone but it is much more manageable and isn’t continuous. She does much more than just treating the ‘condition’ but does whole body treatment that will help you at the time – supporting your nervous system, your emotional state, your immune system, your core energy – whatever you need. I feel so much better from seeing her and I not only feel the benefit from the itch but also mentally and physically.

Since my secondary journey began I have started looking at many other aspects of support and I am becoming more spiritual and looking after my body, mind and spirit. I have looked at the art of Buddhism, using meditation and relaxation techniques, positive attitude and tuning in to myself, who I am and feeling at ease and at peace with myself. It won’t cure me but I believe that it will help make my life better and hopefully live longer. I am not living in a dream world or being unrealistic, but I believe that your mental attitude and belief has a definite benefit.

I am back on oral chemo for the tumour in my liver and have now had three cycles – so far I seem to be doing pretty well and not suffering from any bad side effects. I am feeling well and am told I look well! So I am definitely following the conventional medical route and will continue to do so but I believe that using both side by side has a place in treating illnesses even if it only makes you feel better in yourself. That is why it is called complimentary as it compliments your medicine. Surely that is just as important – to live better with Cancer. And we can. And I will.

I have been writing my blog now for over the past two years and they have recorded my journey so far, my ups and downs, my worries and my fears. Cancer is part of my life, and I have embraced it as my new ‘best’ friend.

We have all started 2021 in lockdown, with the news being consumed by Covid-19, statistics, vaccination information and everything that the pandemic is bringing and has brung. And it looks like there is finally light at the end of the tunnel! So how are you? How do you feel? Not about me, or reading my story but about yourself? We so often don’t give time to ourselves, to allow ourselves time to do something for us, always making excuses about how busy we are, how much the family needs us, all the jobs we need to do etc. Lockdown has put an incredible stress on all of us and this lockdown has been particularly difficult with the darker nights, darker mornings, home schooling, isolation, shielding, not being able to see family and friends and not being able to get out due to the weather. God – how depressing!! But sometimes we are so busy looking out for everyone else we forget that our mental health and wellbeing is just as important – if not more so. It is not selfish in taking some time out and this is something that I don’t do, in fact I am not really sure if I know how to put myself first!!

During the past few weeks I have had my regular scans to see how things are! Unfortunately there is a tumour in my liver that isnt behaving the way it should be and so I am having a treatment change this coming week and they are reintroducing oral chemo tablets – how I have missed my old friend! – Not!! Also my MRI showed up two new wee tumours at the back of my brain. They are treatable and so I am having Gamma Knife treatment on Thursday. Back into the wooden cage so I cannot move my head at all as they are so wee there is no room for any movement or they might miss them! But at long at it does it’s job that’s all that matters.

Since my liver hasn’t been behaving I have been thinking about what else I can do to put as little additional strain on it as possible. You all know that I have changed my diet, and cut out alcohol, dairy, meat and still trying to cut out sugar! Sugar is one of the biggest no nos as cancer cells love sugar so this is one sure way of starving them one source of fuel. I never used to have a sweet tooth until my last lot of chemo in 2017. Now if I was in a restaurant I would look at the dessert menu first!! So why is it that now I am trying to not eat sweet stuff it is all that I want?!! I spoke to a nutritionist and she said that when you are stressed your body’s digestive system stops working properly as does your immune system. As I told her everything that has been going on lately she said that I am very ‘stressed’ and this will put a lot of strain on my liver. So in some ways my cancer is helping me in how I think about things and the need to put myself first and the importance of being less stressed. I can recognise this and acknowledge it. It’s a bit of an extreme way to learn something but the body is an amazing machine and I am finding out more about it all the time and how to try and support it in the best way. People react very differently to cancer but I am trying to embrace it, work with it and learn from it – but I still intend to kick its ass!!

So putting yourself first could be something so simple as giving yourself a bit of time to do something that you enjoy – go for a walk and appreciate the things around you, a run, reading, knitting, cooking, meditate, even a bath, infact anything that gives you some ‘out’ time. I have been doing mindfulness which is really helpful and yoga – but I dont do it every day and I make excuses that I cant even find 5 or 10 minutes. It is creating the habit – it needs only be a few minutes – its a start. I went for a walk on my own last week by Whale Wharf by the Severn and it was beautiful. I had been struggling with my new news and things going on around me so I shouted into the wind, spoke to mummy out loud and had a fabulous chat with my sister on the phone, all whilst sitting on a log! It was so very peaceful and quiet and it was here that I realised I don’t actually know how to put myself first. This is something that I will have to teach myself, without withdrawing in to myself or giving the impression that I am ignoring the situation around me, or that I don’t care! (which is what I think I am doing at the moment!). We all know what we should do – but we actually need to do it.

Today is Mothers Day and I am missing my own mum more than ever. As is everyone who has lost their mum this year, last year – any year. The girls have bought me a beautiful bracelet and are busy preparing an amazing lunch time afternoon tea. Neil ordered me some beautiful flowers and they are not from Tesco!!

Have a lovely day with your families and appreciate every moment. Embrace the good and the bad. Take care and look after one another. God Bless. xxxx

Well here we are on Boxing Day 2020 and Christmas is technically over. I could start off by reminiscing about the good things and the not so good of 2020 – but we don’t really need to go there – do we! But what a fecking year!!

So since I last updated my blog I have had another lot of scans in November. Time seemed to go so fast in between these two scans but so much had happened. My MRI scan of my brain showed a really good response to the last treatment on the four small tumours that they had found – and there was no sign of them. The main tumour site was also stable and the small change that was detected previously they put down to scar tissue. For the first time this year my brain was stable and I could relax. I was so relieved. When I have received my results in the past, I have accepted what they had said be it good or bad and immediately I have looked towards the next scan or thinking about the other scan results. But for the first time I was actually genuinely happy, I was smiling and thought this could be okay. My PET scan results however showed a small tumour in my liver that was showing more activity than they would have liked. So for the first time in over a year the cancer has returned to my liver. I knew that this could happen as there is still no cure for Stage 4, but I wasn’t expecting it. I haven’t really worried about the cancer in the other parts of my body so this was a bit of a reality check. So my options mentioned at that time and following their MDT meeting was sterostatic radiation treatment to the tumour or cyro-ablation. Following an MRI scan it not only showed up the one tumour but also another 3! What is it with me and the number 4?!! But thankfully the other 3 are ‘sleeping’. So the medical professionals opinion now was to take a wait and see approach. Initially I accepted what he was saying but after processing the information I became upset, scared and angry. I was angry – why was I being left? Why weren’t they going to do something? So I spoke to my oncologist the following day when I was having my Herceptin treatment this week. He explained things really well and I felt much more comfortable with the situation after talking to him. He said that I WAS having treatment through my Herceptin and Pertuzamab and that systemic treatment was the best course of action to take as there is no cure for stage 4. He said that he didn’t want to change my treatment until he absolutely had to so as not to exhaust our options too soon. When we discussed the topic of time he said we were still talking years, but that is a question that he cannot give a definitive answer to, infact no doctor can – only god. So I have to trust in my oncologist and the cancer specialists in Bristol and I will keep fighting and doing everything I possibly can to help myself.

I am on a really supportive page on Facebook for women who like me have Stage 4 Secondary Breast Cancer. We are all at different points along this journey. It is so great to have people who really understand what you are going through and can help support you along the way. One lady advised me to “live in today and tomorrow you deal with when it comes.” This reminded me of what I have said in several of my previous blogs and how I am trying to live my life with cancer. Living in the moment. It is so very important, especially now as noone really knows what is going to happen, and I don’t want to waste time worrying about things that may not happen and enjoy life to the full – spending time with loved ones, people who are important to me and making many more memories.

These two pictures show me on Boxing Day 2019 and today.