My journey so far …

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

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

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

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

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

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A Positive start..

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

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

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

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

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

“Keep looking forward”

Good-bye 2019, Welcome 2020

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

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

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

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

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

2020

 

Penny Brohn and Living well with Cancer

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

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

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

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

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

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

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

So for now – good night.

 

A Time to pause..

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

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

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

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

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

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

 

The cherry on the cake….

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”.

WOW …

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!!

 

 

Halfway

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”

 

 

Side effects and Chemo No.2

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.

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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.’

 

 

Chemo Number 1

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.

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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.

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