In mums words “this is the blog I never wanted to write, or in this case, my girls to have to write for me…” 

Hello everyone, Lara and Amy here! Mum wants to keep you all updated but unfortunately her capacity to do it herself has changed, so she’s handed the blog reins over to us. Thank you for all the messages of support, we are reading them all, so please know that if you aren’t getting a reply, it isn’t going unnoticed.

We’ve always been in awe of how mum writes these blog entries, the way she manages to be funny and honest and make you feel like you’re just sitting at her kitchen island with her. So no pressure on us!

Anyway. An update since December.

The news, as some of you may have seen, is that we’ve run out of treatment options, she’s recently had an MRI and CT scan for another opinion and an update on the growth. Whilst the words of “no treatment left” carry a lot of weight, the desire to live is as strong as it’s ever been. 

Physically, things have changed significantly. She’s now in a wheelchair (a bright pink one!) and needs a lot of help with the every day things, but despite lots changing physically, her mind is still strong, and that’s what matters to us now. 

She is still finding comfort in each day, whether that’s a hot chocolate out somewhere nice, or rewatching Harry Potter for the 10000th time. She’s still finding the good bits in each day, and we’re very much taking it a day at a time. 

As mum has said time and time again, “happiness can be found, even in the darkest of times, if one only remembers to turn on the light”. As a family, that’s our job right now, keeping that light on for her. We are doing everything we possibly can to make sure her days are filled with love, laughter and the occasional sweet treat.

Oh, and in case you were concerned, she still has a full set of acrylics on with an at home appointment booked this week. Obviously. Standards are being maintained.

Thank you all for your continued support, we will update you when we can. 

Lara and Amy x 

Sorry I haven’t updated in a while but as we all know, life is busy and life goes on! But I’m here, I feel well so long may it continue. The 5th of July was my 6 year cancerversary with secondary breast cancer.  Which in itself is a milestone many do not get too. People say oh Ali you’ll be here for years, and I bloody hope I am. But I feel we are heading towards uncertain times. 4th July was my first year anniversary since my first awake craniotomy. In that year, it has been a difficult time with not knowing what was going to happen and hey ho I was back under the knife 5 months later as the bugger hadnt gone but grown. This time it sounded more positive but in my MRI in February the tumour had grown back AGAIN. So what now? We are starting to run out of options but I was still able to have radiotherapy 5 sessions over 1 week. My following scan in May showed that the tumour had significantly shrunk but was still there, so now it was felt to wait and see what it is doing in my next scan. My next scan is mid August and we shall see what that brings. To say I’m worried is an under statement! I feel well. I’m losing weight! And above all my sheer determination to live is stronger than ever. My granddaughter has just turned 4 and starts primary school in September. Another milestone ✔️. Its been an up and down year so all I want is a stable scan. I dont care if it’s still there but please let it be stable and not to have grown. Scan 19th August  and hopefully results by the end of the week. Please keep me in your prayers. Love to you all and I will update you all in a couple of weeks.

I first did a blog on Penny Brohn in Dec 2019, 5 months after my secondary diagnosis.

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. Most of 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 17 of us in the group all with Stage 4/secondary/incurable. The women and 1 man, in the group were incredible all with their own stories and experiences. The youngest there were 38. Their humour, insight, compassion, understanding, and  friendships were 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 will be posting another blog tomorrow!

And that’s a wrap!! Christmas 2024 has come to an end. I hope you all had a fabulous time making memories with loved ones. I am so thankful that I was here for it. 356 days until Christmas 🎄 2025!! and I very much intend to be here!

Bringing in the New Year was very quiet, just Neil and myself. It was really emotional, and I shed quite a few tears. But seriously, what a scary few months it’s been. I’ve said a lot already in my last blog entry. I know that with stage 4 there will come a time when they say that unfortunately, there is nothing left, and they can do no more. I thought I had accepted that, but clearly not!! In my clinic letter dated 19/11/2024, it said, “There are no good systemic options for treating the tumour in the brain. Given this, the alternative
to surgery and radiosurgery would be supportive care and Alison is highly motivated to do everything
she can to treat her disease and is fully accepting of any risks involved in further treatment.”

Did i think then that this it? Yes I knew that was a real possibility.This was just a wee bit too real! Too close! No way! I will do anything and everything to keep fighting, to keep living.

I didn’t want to wait until the new year for my op, and neither did my surgeon, but there was no way I was going to be in hospital for christmas! I needed to get the tumour out to give me the best chance of survival. I got out of hospital on the Saturday night. Lots of time left for christmas prep and I got my christmas nails done on the Monday.  Priorities!!

Post op appointment 30/12 and the news was very positive that they got all the tumour out. I don’t think we could have had better news. He is writing to my oncologist, and we shall see how he wants to proceed. I also got my staples out. There weren’t as many as my first op and it wasn’t painful, just a bit stingy. I am just so thankful and relieved that the whole thing is gone.

One really scary moment post op was when Neil and Lara came in to see me, just after the op, and I went to shift myself up in bed and then I noticed there was a lot of blood around my right hand side. Neil and lara called for help. Then there were about 6 nurses around me and my anesthetist happened to be walking by so he came in too. My arterial line, which they use for monitoring during the op, had become unattached, and it was pumping the blood out. At first, they thought the whole thing had come out, but it was the anaesthetist who said no, so everyone was holding it wrong to try and stop it bleeding. Everyone was shouting my arm was in the air and there was blood everywhere!! I was covered. It was all a bit chaotic! Lara, blessed her had to go to the nurses station as she is pretty squeamish and had to lie down. They eventually got it stopped and cleaned me up, changed the bed and then I was fine!!

Christmas was just lovely, and the family did an amazing job doing dinner – BUT did I just sit and ‘supervise’ – of course I didn’t!!

And so here we are starting 2025. I will probably try and go back to work at the beginning of Feb. ( If not sooner!!) I am incredibly tired all the time and still need to have a rest during the day. But it’s more than just feeling tired. It’s like complete exhaustion. But I’m still here! And that’s what matters. It is 2 weeks and 1 day post op.

I am so very grateful and thankful that I am still here. Many are not so lucky.

Hi everyone, I am aware that I haven’t updated my blog or anyone about how I’ve been since July and my op. The bit of the tumour they  couldn’t get out has unfortunately grown, and it’s now about 3 cm. So I had another urgent mri, and they talked about me at the mdt meeting. The only option is to have another operation to try and remove most of it and blast the remaining bit with gamma knife. The other option is to leave it and frankly that isn’t an option – ever. I have too much passion for life and a greater desire to live. I’m not going to lie. I am more scared this time. Not of the op itself, but the risks have increased about changes to/loss of speech, understanding, and processing – the important things!! My handwriting has changed dramatically, and my typing skills have reduced, so I am starting steroids in the morning, which will hopefully help the inflammation and help reduce these symptoms. I should be seeing my surgeon next week so they can operate before Xmas. So operation Christmas is on (no pun intended!!) Dec’s being finished this weekend, halfway through pressy shopping, and will start non-perishable shopping! Generally, im feeling good, I’m well apart from this wee fecker upstairs. Just can’t think about not going through this again, as I’m not giving up yet, and dying is not an option! Not yet – not for a long while. I’ve done it once, recovered well, and so I’ll do it again, and hopefully, we’ll get rid of the wee bugger this time. I’ll keep you all updated along the way.  If you have any prayers or positive vibes, please send them my way. Thank you. Lots of love, Ali ❤️ Feck cancer xxx

And I am feeling good. My scar is healing well, and when my hair grows a bit, it will hide most of it. I’m recovering well, and apart from the odd headache, I’m pretty much out of pain, but I’m bored! So I must be getting better!! I can’t crochet so I’m painting and knitting!!  I’m looking forward to start catching up with friends. So visitors are welcome!!

The operation went well and they got most of the tumour out. The bit that’s left was too close to my speech control, so it wasn’t safe to get it all, but my last scan showed it as being ‘insignificant’, so that’s really encouraging.  They did find one more wee bugger in there, slightly lower from my operation sight and there was the other one we already knew about. They were both treated with gamma knife on Thursday. Few more headaches as a side effect but it’s all manageable.

I remember bits of my op being awake, but the majority is hazy. My neurosurgical team was amazing. The anaesthetic team kept me sedated and awake as needed, and the ICU nurses were so lovely, and I was really well looked after.

I had 44 staples removed a week after surgery. A few of them were a bit sore and stingy but generally it was ok.

I have put 4 pictures below, so scroll down fast to miss them!!

So now I am concentrating on making a full recovery. I am very tired all the time! But hopefully this will improve.

I will do another live blog soon. Thank you all again so much for your well wishes, kind words, prayers and support to me and my family.

As some of you may have read through my daughters posts on Facebook, I am indeed waiting for brain surgery. I saw the neurosurgeon last week who certainly didn’t sugar coat things when telling me the risks of surgery! I was completely overwhelmed and shit scared to say the least.

But they have decided to remove the ‘area of doubt’ which is about 2cm and its serious business. I will be having an awake craniotomy where – yes – I will be awake for most of the operation! Where the tumour is sitting, it  is very close to the part of your brain which controls your speech and coordination,  so they want to make sure they do as little as they can to disturb this area so they minimise any side effects after surgery.  The main risks/side effects are to my speech and weakness on my right hand side.

Now that the news, procedure, etc. have sunk in, I am feeling a bit better and coming to terms with what has to happen. I have my pre-op assessment tomorrow and op is planned for 4th July. Independence day! – so hopefully that is a good omen!

Full recovery is normally about 6 weeks, all being well. Most of you know that I am a determined and stubborn person, and I will work hard to recover fully.

Pre-op assessment today and feeling much more reassured. I did get rather upset hearing how the anaesthetic will work, drips and tests etc but he was really lovely and reassured that I will be okay and they will all be with me. I am seeing the speech therapist for my pre-op assessment next week and then it’s here!

Update you all on the other side!! (Of the op!!)