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.

 

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.’

 

I waited to see my neurologist on Thursday afternoon with Neil. I was scared, nervous, anxious and felt sick. I just didn’t know what to expect or what he was going to say. He must have picked this up from me as when Neil and I walked into his office he said before any of us had a chance to sit down that he was very pleased with the scan result. I was instantly relieved and then he went through the details. My tumour has continued to shrink and it is now ‘tiny tiny’ – his words. He said that originally it was very big – which I knew – 3.2 cm in diameter. And now it was about the size of a pea. I couldn’t believe it. I cried as I tried to take this news in. He understood that I had been scared and the brain is difficult to treat and is ‘thee’ major organ. But – I was okay. It is well under control and he is really happy with how things look. So I will have a further MRI in February 2020 and review with the results.

I felt like a huge weight had been lifted off my shoulders. In that short space of time I felt emotionally exhausted and an overwhelming sense of relief.  I couldn’t stop smiling and couldn’t wait to tell the girls.

Two pieces of good news in the space of 3 weeks. I couldn’t have asked for much more. Now I can have a bit of a breather, a reprieve and really have an amazing family Christmas. A recharge of the batteries and I will be ready to fight the next hurdle as it comes along. I am not out of the woods but have reached a clearing. Perhaps Neil will let me put the Christmas tree up early!!!

“Trust yourself. You’ve survived a lot and you will survive whatever comes next”.

So I thought my doctor was signing me of for a week but he actually signed me off for a month! After two weeks I felt ready to go back but in hind sight I am glad I have had the extra time. It was a dark time and I really don’t want to feel like that again. I am still extremely tired, but not overwhelmingly like before. I am in a much better place now than I was and have actually started to feel like my old self again – I feel like I am getting on top of my sleep and feeling emotionally stronger – just in time for chemo number 4!!

Before this next cycle of chemo I had a full PET scan to see how my cancer was responding. If I had responded well I may not need to have any further chemo, so I had the scan and then only had to wait two days till I got the results. But they were two long days! Lots of things went through my mind – has the cancer spread anywhere else, has it gotten worse? I was getting out of breathe after simple tasks so I thought the cancer in my lungs was growing. I couldn’t help these fears, worries, anxieties or whatever you want to call them. I suppose its completely normal, no matter how hard you try or how positive you are. Every time, except for one, when I have walked through a consultant’s door, I have been given bad news. So perhaps I was sort of protecting myself by expecting bad news.

But boy was I was wrong!! So I sat there in front of my consultant, my chemo nurse and beside Neil waiting for my results. Originally I had 3 lesions in my liver and several in my lungs. After 3 cycles of chemo I I was told that two of the lesions in my liver had completely gone and the one remaining was no longer of significant concern and the lesions in my lungs had completely gone. This was the best news we could have had. My body is technically cancer free and I have never been told that before. Such an amazing response after a relatively short time. But to be honest I didn’t really know how to react or respond and I wasn’t really sure how the others in the room expected me to react. I don’t really know how I felt and I still don’t. Is it because l know I will be living with cancer for the rest of my life, we know that it is very likely to come back – although we don’t know when. It could be months or years or maybe it won’t come back at all –  we don’t know. I should be over the moon – but I’m not. Don’t get me wrong I am extremely relieved, and I couldn’t have wished for better, but perhaps it is the results of my MRI scan that makes me apprehensive about celebrating too soon.

My consultant decided I would still have chemo no 4 but would not need the last two planned cycles. So no more chemo! I shall have another full body scan at the end of January and review then. I still need to have my Herceptin and Pertuzamab every three weeks so my treatment continues – but no chemo drugs for now!! I have had my MRI scan done and I see my consultant next week to go through the report. What will be will be and fingers crossed I get some more good news and then what a Christmas it will be!! I will have an amazing Christmas regardless but this would be the cherry on the cake. So again we wait – I’m getting good at that!!

 

 

Sorry I have been a bit quiet of late but it has been a difficult few weeks and I have found it very hard to update my blog at this time. I haven’t wanted to go anywhere, do anything or speak to anyone. The nasal, cold/flu symptoms and fatigue took over and I found everything just so difficult to deal with. When you feel rested and have that additional energy everything is more manageable and I just didn’t have that.

I’ve said in the past “god i’m tired!” but this is different. Many of you will be able to relate – this ‘tiredness’, fatigue is all consuming. You just can’t carry on. You have to sleep, rest, lie down – you don’t have a choice. I realised I needed to do something when I nearly fell asleep at the wheel of my car.  So I am having some time off work and I am starting to feel more rested. But despite feeling so exhausted I am having trouble sleeping. I am on average getting approximately 5 hours of sleep. I still have pain in my legs which doesn’t help with my sleep – so – I am exhausted, not feeling 100% but can’t sleep!! None of this makes sense!!

My 3rd chemo was fine and I used the emla cream so it was a much gentler process this time!! I met with my oncologist to discuss my side effects, but there isn’t a huge amount that can be done. I need the drugs that cause the side effects so its how we can manage these symptoms. I will have another full body scan before my next chemo and review the results to see what the plan is – do we carry on as we are going or does something need to change?

I went to see my GP who signed me off work. He said to me ‘Don’t be a hero’. My family have said ‘Don’t be a martyr’ or reminded me that I am not ‘superwoman!’. I know they all have my best interests in mind and to be honest I didn’t think I was being but I know that I have been going about my life as if there was nothing wrong and I suppose at some time something was going to change. But I will not let this cancer beat me and take over my everyday life – I will not allow it to dictate to me what I can or cannot do – so I suppose taking things a little easier for a short while is a compromise that I am willing to take – for now!!

“Some days are just hard, but there is hope in tomorrow”

 

 

Wednesday 18th September would have been my daddy’s 85th birthday and on Thursday 19th September I would have been 14 years clear from my first cancer in 2005. There is a lot I could say about both of these facts but in a nutshell I was a daddy’s girl and I miss him every single day. The last thing my daddy said to me was not long after my final chemo and radiotherapy session. He said to me ‘Ali I am so proud of you’. I will never forget this and this still makes me cry 14 years later. My only regret is that I lived so far away from my family – them in Northern Ireland and me here in Bristol. What do I want to say about my previous cancers? Nothing really except they helped shaped me to be who I am today and the fight, determination and positivity I have now is only stronger.

 

 

 

 

 

 

 

Since having my first chemo I have generally been okay and have continued to work and coach gymnastics. I have suffered from some side effects but thankfully they have been manageable. I haven’t had any sickness or diarrhoea and this is great as it means that generally I have been able to carry on with my daily life without too much difficulty. The main side effects I have had are headaches, sore mouth and mouth ulcers, sore throat, very sore nose, cold/flu like symptoms, dry skin on my hands, general aches and pains and tiredness – god am I exhausted – pretty much all of the time! But the biggest side effect for me is my hair loss.

I started noticing my hair was beginning to come out last Tuesday – two weeks after my first chemo. I knew it was going to happen and it’s not like it’s the first time! But nevertheless it is upsetting and this morning in the shower it looked like I had furry gloves on!! I did have a little cry as to me this is the visual reminder to everyone that I have Cancer. My daughter says ‘Mum you rock the egg head’! and I have been told I have a lovely shaped head and tiny ears!! So I suppose that is a benefit!! At the moment it looks much thinner but there are no patches, but I don’t think it will be long before I shave it off. On the plus side I have bought some lovely new turbans and I have lots of colours to match my outfits!! You know me – I have to be matching!! So another week on I just couldn’t stand it any longer. I looked like a grizzly bear in the shower and my hair was just flying around me everywhere.  My hair had no colour, no shine and looked dead – which it is – was – so I got Neil to shave it all off on Saturday. A lot of it just came out in his hands so it was better that it was done now rather than leaving it to continue to fall out around me.

And so I am bald again. (Not great photos (they are selfies!!) but you get the idea!)

As I got ready for my second treatment the nurse didn’t use any Emla cream and I didn’t really think anything of it until she put the needle into my chest!! Bloody hell did it hurt! She then apologised and said that she thought I had to decided not to use it as some people say it makes no difference – well firstly I didn’t have any cream to use and secondly I don’t know who these ‘people’ are, as it hurt!! And I have quite a high pain threshold!! But I now have cream for next time!! The rest was quite easy with no issues and only took 4 hours this time.

When I had my cancer treatment in 2005 and 2017 I sailed through with no side effects and felt generally really well apart from being tired. This time I am still doing well and generally feeling well but I am suffering with some side effects. Thankfully they are mostly manageable and they seem to effect me the second day after my treatment. I am incredibly tired, with a headache, flu/cold symptoms, a really sore nose, sore throat and muscle aches and pains. After the first round I seemed to feel a  bit better after about a week so I will see how long they last this time. I am taking lots of pain killers which don’t completely work but they take the edge of. My muscle pain is worse in my legs and seems to be worse at night, sometimes it makes me feel like I don’t know what to do with them!! Perhaps having the cross trainer might help. Having a headache constantly does wear you down, especially when pain killers don’t really work. And generally it’s a feeling of I can’t be bothered to do anything, talk to anyone, or go anywhere. It is pretty shite because I don’t feel great, I’m in pain, I’m not going to lie but I’m not complaining as I know there are people out there suffering so much worse than me, so you just have to smile and get on when you can – and if you need to rest – then rest when you can. So Friday’s are not great for me at the moment, but we shall see how things go.

So I’m off to bed and of to work tomorrow in one of my turbans. I’m wearing blue so it will be a blue one to coordinate!  I will keep you all posted as to how things are going.

‘look at how far you’ve come …. and then keep going.’

 

 

So it all begins again. Arrived at the Spire at 9.00 a.m.and apparently my port is so neat and tidy and is healing well. I was a wee bit anxious about it and the hook up process but they used emla cream to numb the area a bit and it wasn’t that bad at all. There is a little swelling still and you can see the lump of the port under my skin but it is a small price to pay to administer the drugs with ease and it helps save my veins!

I have been lucky with everything so far really – everything has gone smoothly and without too much pain or discomfort and the only real setback was my infection which delayed the initial port placement but it has all worked out in the end.

So I am all hooked up and ready to go. They used a needle to insert into it under the skin into the port to administer the drugs. It wasn’t painful or sore just a little bit achy if I am honest but it seems fine. I am having 3 separate drugs and each will take about 1 hour to 1 1/2 hours to administer for this first time. If all goes well they should be able to do following infusions in about half the time. I have to stay for a total of 6 hours today to make sure that I don’t have a reaction to any of the drugs. One and a half hours in and so far so good.

 Why is it that they always seem to omit one little bit of information?! I have to self-inject tomorrow an injection to promote my bone marrow to produce white blood cells to help when they take a dip because of my chemo which will hopefully help me stay free of illness and infection.  It’s only one injection and I did have to do this last time (although it was a week of injections then!) so I’m getting off lightly! – just another thing to do!

The nurses Aly and Joanna are lovely and looked after me very well. They really seemed to care. The drug infusions went well and thankfully I have had no reaction or no side effects so far and I got home about 4pm.

It has been a long day and I am now quite tired! I didn’t really sleep very well and the days events are now catching up with me. The family stayed with me in shifts to keep me company, fed and watered!! Got my next session booked in and now I can rest for a while as the appointments are calming down.

So this first set of chemo treatment involves 6 cycles every three weeks. Fingers crossed they will all go smoothly and I will continue to stay and feel well as I do tonight.

‘Being positive doesn’t come from doing well; Doing well comes from being positive.’

 

 

 

 

Isn’t it funny how something can completely take over your life and you can become so engrossed in it that you can lose who you are? Well that is what this week has become – I am still that cancer patient so wrapped up in everything that is going on, that needs to be done, sorted and organised that I have become lost. Who am I? Where am I?

My port placement had to be postponed because I got an infection but thankfully it was done on Saturday morning. I was a bit nervous but not as much as I thought I would be. Perhaps the fact that it had to be postponed just made me think lets get it done and out of the way. Another box ticked. I was having local anaesthetic and sedation. To be honest I don’t think they gave me any sedation at all!! After the first lot was given the consultant performing the procedure asked if I was feeling more relaxed and I said ‘eh not really!!’. So they gave me some more and then another dose before the port was inserted. I didn’t feel sleepy or anything but it did go better than I expected it and it wasn’t too uncomfortable. They monitored me for an hour or so in my own private room. Lunch was a beautiful wholefoods salad with a peppermint tea! They certainly know how to look after you.

So I felt okay and headed home. On a happy note my sister arrived from Cyprus that evening for the week and it was so lovely to see her and for her to see me feel and look so well at the start of this journey. It is always so hard when you are so far away from each other and you only have the phone for contact. So I have had some time to relax and catch up with my sister and am now in preparation for my first chemo tomorrow. So I will update you all as to how it goes.

 

 

 

I had my liver biopsies done on Monday 5th August. I wasn’t allowed to eat from 7:00 a.m. and my appointment was 10:30 a.m. The nurse who looked after me was very caring and attentive – in fact, at times,  was a wee bit to attentive – even for me!! I had to give her a bit of a background and when I said out loud that I had a brain tumour it suddenly made everything much more real. As it was considered a surgical procedure I had to put on a gown and off I went.

The local anaesthetic was a bit stingy as I am sure some of you will know they can be. I had a couple around the incision site and then off he went. I closed my eyes and he was telling me everything he was doing each step of the way. I didn’t really want to know!! Once he started the nurse was rubbing my legs and ankles and then came and held my hand which I was thought was a little strange until there it was – a push, a sicky feeling in the pit of my stomach, a pressure and an ‘ouch’!!! The doctor THEN said I might feel that as the biopsy needle went into my liver! He failed to tell me that bit!! So one done and another to do. Thankfully he was happy with both samples and he didn’t have to go back for a third! He said I made his job very easy as it wasn’t easy to get to!!

I was taken back to the observation room where my blood pressure and pulse were monitored for 4 hours. I was able to eat and drink after an hour. I was pretty tired and dozed on and off for the first hour but it must have been so boring for Neil and Amy. I took the following day of work and this turned out to be a rather good idea! – I was tired and quite tender – and it’s not like me to say actually I need to stay in bed!!

So following the procedure how do I feel? It felt uncomfortable but not painful. The doctor was great and the nursing staff were very caring and attentive. Having to talk about my brain tumour, well even mentioning it, made it real. Lying there in the ‘operating’ room, made it real. Being in the gown, lying on the bed, being monitored and checked – it made it all fucking real. I had become a cancer patient. This is actually happening. I have a brain tumour which is very possibly secondary breast cancer. I have cancer spots on my lungs and liver, also very possibly secondary breast cancer. Cancer and I are now in a long term relationship – but I am the one in charge. I am the one calling all the shots. I have cancer but cancer doesn’t have me.

The results should be back within 10 working days but they were in fact back within a week and I had an appointment with my oncologist on Wednesday 14th August. This is good as in the grand scheme of things we don’t really want to be hanging around.

So – the results – the cancer in my liver relates to my breast cancer that I had 14 years ago. I thought it might be but it was still a bit of a shock. My oncologist said that it was ‘good news’ as in there are more treatment options available to me and it responds better to treatment. He said that it was also unusual as Herceptin related cancers are normally quite aggressive and reoccur or spread within the first 4 to 5 years – not 14!! But then again this is me we are talking about!!

Professor Bahl was talking ‘some’ years down the line, but he didn’t want to give me a false sense of security. I said I understood but at this moment in time I don’t need or want specifics. ‘Some’ years down the line was sufficient – I am well, fighting this head on and my treatment is only beginning so we don’t need to be considering that route – yet.

So the plan is for chemo which will be done at the Spire hospital at Aztec West which is so much easier than fighting my way to BRI. It will involve 6 cycles of chemo and another combination drug over 18 weeks every 3 weeks. That takes me up to Christmas Day! Part of the drugs will be given to me every three weeks for the rest of my life or until they stops working, but then there are other options available, so that’s quite a lot to take on board. My first chemo is scheduled for Wednesday 28th August. This will take 6 hours as there is a chance of an allergic reaction to the Herceptin but the drugs themselves will take a total of 4 hours. Joy!! It’s going to be a long day.

Before my chemo starts I need several more tests – including a PET scan, heart scan, blood tests and a surgical procedure for a Port to be fitted which is a device that will be fitted into my chest through which the chemo will be administered. (more details of this will follow in my next blog). Some of these tests were done today and the port placement is being done Wednesday. I am not looking forward to this procedure. It will be done under a local anaesthetic and sedation. I will let you know how it goes once I have recovered somewhat. 

Its all moving so fast and I haven’t really have much time to process things. This is probably a good thing and perhaps once Wednesday’s procedure is over I can relax a little and think about what has happened over these last few weeks and what is to come.

When I was diagnosed with my brain tumour on Friday 5th July my oncologist arranged an urgent CT scan to see if there was any further cancer in my body.  I had this done really quickly on Tuesday 9th July but had to wait for 3 weeks for the results.

I found out the results on Monday 29th July – so why have I waited till now to share them?

To properly explain this let me share the results – I have small ‘lesions’ in my left lung and my liver.

FFS. Not just one place or possible further spread – but two. Only me. Why can’t I do things easily – why do I have to be so different? So special?!! Anyway the results are what they are – but what do they mean?

They have decided to take biopsies from one of them in my liver as it is the more major organ! (This was done on Monday 5th August). They are now analysing the samples to see which cancer it relates too – Breast cancer number 1, 14 years ago or breast cancer number 2, from 2017 (both breast cancers were completely separate and not related) or is it another ‘new’ cancer? This is me we are talking about so it could be any!! These results will then give my oncologist the important information he needs to plan the treatment on how to treat this bastard –  but it will more than likely involve chemo – again.

The lesions are very small but they are there. Both my liver and my lungs are not being affected and both are performing well. I do not have any symptoms and blood tests are normal and there is no fluid surrounding the organs. So in theory if I had not had the CT scan done I would not know that it was there. That in itself is scary.

So that is pretty much it in a nutshell – and again I am waiting. So why am I only sharing this now? This had nothing to do with being in denial, or sticking my head in the sand and pretending that it wasn’t real or that it wasn’t happening. This was something for my immediate family and extended family to ‘process’. So why have I now decided to share?

 I always said that my blog was going to be open and honest and nothing would be taboo so how could I honestly share my cancer experience, the highs and lows if I didn’t share the truth.  This is just another hurdle to overcome and I am facing it and ready to fight it head on. So this was the main reason. Why didn’t I want to share it? – There is nothing that you or my family can say to make this situation any different. This new information has probably shortened my life by a few years further but it is not that doom and gloom situation. This is only the start of my treatment and who knows what advances are being made and how my outlook will pan out and change. Again I am not being naive but I am not on my way out yet!! When I heard the results of course I was shocked and stunned but I didn’t have that sinking feeling in the pit of my stomach. I don’t feel any different today from how I did the previous week when I didn’t have a clue about any of it and if anything I am filled with even more determination to fight, to find out more about my new chosen alkaline lifestyle, to seek further complimentary support from the Penny Brohn Centre and to do everything in my power to make sure that I can be and will be here for many a year to come.

Yes it is scary – and I would be a fool if I said I wasn’t, but it’s not a dark and despaired feeling, it is the feeling of the unknown. It is something that the majority of people take for granted – but in truth we don’t really know. It is important to live in the here and now and it is learning to change your mindset to accept this for what it is and not just expecting to live to a ripe old age. Tomorrow is not guaranteed.