This is my journey through Breast Cancer which started at the beginning of my second encounter and now in 2019 it is sadly my third battle. Being told you have cancer can be a very scary, lonely time with a lot of questions. If I can help just one other person along my journey then my blog has done its job. Don't be afraid to ask. I am just like you but taking a different road for a little while.
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!!
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.
As we begin to prepare for the end of this year, I think about those who have lost loved ones or who’s loved ones are suffering – whether that be from Covid-19, Cancer or any other illness. As I reflect I am thankful that I am still here, and will keep fighting all the way. Others have not been so lucky. So count your blessings. Think of what you do have instead of what you don’t. Whether you are in Tier 2 or Tier 4 we have so much to be thankful for – sometimes we just need a reminder, a moment to think about what is it that is really important to us. So as we face an uncertain 2021 be thankful, stay safe and take care of one another.
I had my 2nd round of gamma knife treatment on Thursday 27th August 2020. 8 weeks ago – and what a bloody 8 weeks it has been! I arrived at the hospital for 7:00 a.m. – pretty standard! Because of covid I had to go on my own – which was a bit daunting – but I’m a big girl – I can do this! There was one other guy waiting as well and this was his fourth time getting the head frame on. I asked if it was painful and he asked me if this was my first time? He told me it wasnt too bad, a bit of pressure – but his eyes and face told a whole other story!! He went in first and I waited. My wee irish nurse was there which was great and she said she would be with me throughout the procedure – she knew I was very nervous.
Then it was my turn – OMG – when I went in to the cubicle there was a chair waiting in the middle with Dr Herbert, an assistant nurse, what looked like two trainees, my irish nurse and me! Fuck! It was like I was going to be on display. So I sat down and did as I was told! There was a ‘stingy’ local anaesthestic injection – bloody hell – stingy is one word for it but possibly not my choice! and it seemed to go on forever. I had to have 4 – the points that they would use to attach it to my head. Dr Herbert said that I could swear if I wanted but I couldn’t speak! I was squeezing the life out of my nurse’s hand and at one point Dr H had to remind me to breathe!! So – it didnt take too long really – 15 minutes ish. I sat with my eyes closed and I cried at the end – so one good thing to happen was at least I know I can cry!! Afterwards I waited in the waiting room to have my MRI scan before being taken to the treatment suite. I felt pressure but not pain. I was worried about letting ‘go’ of my head and let the machines and support take the weight as I thought it was going to be ‘sore’ but it was okay.
I don’t want to ‘scare’ anybody – and everybody’s experience is different, but this blog is from my prespective and to be an honest account of my journey – so I am not going to write that it was a breeze – there was no pain – because I would be lying – and that is not what I am about or what the purpose of this blog is for. Here is a picture of me in my head frame.
As I was getting ready to go in for my treatment I was told that it would take 50 minutes – I thought this was quite long when originally I had been told about 15. Anyway I was clicked in to place and they played the radio for me. I thought to myself 50 minutes is approximately 10 songs with all the chat etc so when I had counted 5 they were coming in to get me out from the machine so I must have dozed off!! So it was all done – just to get the head frame off. Whilst I waited for Dr Herbert to come and take it off I briefly saw 2 stubby what looked like screwdrivers!! So I didn’t look!! Dr Herbert then told me I had had 4 small tumours – pardon? – what? – yes – I had 4. 2 more showed on the MRI planning scan but all had been treated and he felt the treatment had gone well. So that’s why it took 50 minutes!! He said he would ring me in a couple of weeks to see how I was and my next scan has been booked in for the end of November.
My PET-CT scan results came in just the day before my gamma knife treatment – thankfully it was good news – I continue to maintain a complete metabolic response. Fan-tas-tic!! There are a couple of little spots in my liver which are not cancerous but they are going to keep an eye on them and my next scan will be the end of November.
So with all that over I had my holiday to look forward to seeing my sister any my Mummy. Some well needed rest and recuperation. However Mummy had a fall and broke her hip and was in hospital and without going into the details she passed away on Wednesday 23rd September at approximately 10:10 a.m. WHAT THE FUCK…… NO NO NO….. this was a nightmare that I couldn’t wake up from. As I write this and on reflection this must have been one of the hardest things my sister must have had to do – to have to tell me our Mummy was gone.
I flew over to Cyprus on the Saturday 26th September. OMG the stress of having to arrange the COVID test 72 hours beforehand, to complete the Cyprus fit to fly document no more than 24 hours beforehand… but it was all done and I was on my way to be with my sister. The following two weeks involved the funeral arrangements, lots of tears – from my sister, still no tears from me. I don’t know why I am so hung up on the fact that I can’t cry. My counsellor asked the same – but I was always a cryer – even over the stupidest things! If something was sad – I cried. But not when I was diagnosed with cancer, or being told my Mummy was dead. Anyway the day of the funeral arrived – and so did the tears! I thought I would be fine, I felt strong and was there for Shelley but as soon as I saw her coffin it was like being hit by a sledgehammer – FUCK – this was real – it was true – Mummy had gone and I would never see her or hear her voice again.
Mummy’s funeral was beautiful, I found the strength from somewhere admist the tears to read a poem, the music was ‘so Mummy’ and the support from their Cyprus friend’s was immense. Our families were one – united in our pain and memories.
Now the grieving procees begins. Is it different for my sister, Shelley? – she lived with Mummy so she was everywhere she looked. Mummy was there, a constant reminder. Because I lived in the UK is it easier to deal with. No – it wasn’t, it isn’t.
I am back in England and have returned to work this week. I am currently having my treatment – and life goes on.
I have had a bit of dizziness and I am sometimes unsteady on my feet. I also had a fall in Cyprus where I think I turned my head too quickly and ended up on the ground – beside a cliff overlooking the sea!! That could have been interesting if I had been standing any closer to the edge! But I was fine! I am fine. It could be scar tissue from the recent treatment – I must remember that it was only 2 months ago and so much has happened in that time. It could be the effects of everything – flying, upset, lack of sleep, stress etc. My next scans are at the end of November and I am not going to spend the next 5 weeks worrying – because life really is too short and none of know what is going to happen. I will of course keep an eye on things and if I am concerned I have a wonderful team of people looking after me who are only at the end of the phone – and I will phone them if I need to. But for now I am going to live – I will allow myself the time to feel sad but as my daughter said to me yesterday ‘don’t let it become all consuming’ – and she’s right. As hard as it is to say – Life goes on and I am living – and I will continue to do so!
So August has seen the return of Ali in to the big bad world!! I have had my nails done, my hair cut and celebrated with going out for dinner with good friends. I have also been able to do my own shopping!! – which felt strange but I wasn’t unnecessarily worried, just wary. I am hoping to return to work in some kind of capacity come September – so normality is resuming.
When I had my last treatment there was a lady who had had her last cancer treatment and ‘rang the bell’. It was a bitter sweet moment. I was so pleased for her that she is free of this dreadful awful disease and a moment of reflection that I will never ring that bell. I’m not bitter, nor begrudge her or feel why her and not me. It’s the way it is.
August marks the three month point and time for all my scans etc. I had my MRI scan done and results on Tuesday 18th August 2020. Of course I was worried about the result but not overly so as these results would hopefully tell me if it was scar tissue or if it was the tumour growing back. My consultant phoned me and said that the main tumour site was stable, horray, but they have unfortunatley found 2 new tumours at the back left hand side of my brain. Well – I wasn’t expecting that! We didnt really talk about the 0.5 mm change so I am assuming that this must have been scar tissue as the site remains stable and that’s good news. And so to the 2 new ones. They are very tiny apparently and he is fairly confident that he can get rid of them, so again this is good news. The bad news is that they are there at all!! They are doing gamma knife treatment next Thursday – so thankfully not long to wait. The other bad news is that I have to have the head frame which is screwed in to my head. I’m not exaggerating! – this wooden and metal frame is attached to my head to keep it completely still whilst the treatment takes place. The tumours are so tiny there is no room for error so this cage completely immobilises my head. I also have to go on my own due to covid restrictions so I will have to ask the nurse to take a picture of me so I can show you all!! I would prefer if Neil was with me but in a way I am glad that he can’t come as I don’t want him or the girls to see me in it. Although I will show them the photos!! I remember my consultant saying to me in the beginning that it looked like something they would have used as a part of medieval torture so I’m really looking forward to that!! I have had a covid test done, and it wasn’t as uncomfortable as some people have said, infact the nurse and I ended up in fits of giggles! I have to self-isolate until my treatment date – I have my PET scan on Monday but that’s okay. That date has been changed once so I am not changing it again!! I will get these results on Wednesday so another big week next week. Scan, results and treatment. Bring it on!!!
How do I feel? That’s a good question!! – I feel numb – I am more worried about having the frame fitted than I am about the new tumours!! I have said before that I have struggled over these last few months and a lot of it is has been because I feel completely detatched from my emotions – I can’t cry – I was always a cryer – I would cry at silly adverts, films, the silliest of things, I would even cry when other people cried! but yet when I was told I had cancer, or that I have two new tumours – there was nothing. Why can’t I cry? Why don’t I ‘feel’ anything? Is this normal? Is this my way of coping? Or am I just becoming a hard bitch?!! I don’t know. But with the help of an amazing counsellor I am starting to work through things and feeling brighter and stronger emotionally every day. This is my life now – cancer is with me all the time – it’s like that friend who hangs around all the time that you don’t really want!! I don’t want to spend my time living from scan to scan and worrying all the time about the what ifs, and buts – Cancer if part of my life and I am going to embrace it. I am Ali – that’s all – this is me.
On 5th July 2019 I was diagnosed with a brain tumour. And what a year it has been!! 7 MRI scans, 1 CT scan, 4 PET-CT scans, 1 biopsy, 3 sessions of gamma knife, 4 ECHO scans, 4 cycles of chemotherapy and 16 cycles of Herceptin and Pertuzamab so far. 121 days of isolation. 674 days since I had my last alcoholic drink and approximately one year since I became a vegetarian. WOW!! Quite a year when you write it all down!!
My last lot of scans were in early May and to be completely honest it has been a difficult few months. It is hard not to worry about the what ifs and not to look to the future even a year down the line – no matter now much mindfulness I try and put into practice!! This journey is certainly a roller coaster and you have to ride the ups and downs along the way. Over this lock down period there have been more downs but over the last couple of weeks I have begun to feel a little stonger.
Its hard to share your inner feelings with family and loved ones. They worry enough about you and sharing those inner feelings, insecurities and worries is hard. I struggle because I need to say certain things, have someone to listen to me and not be emotionally involved, to understand what it is like. So I have decided to see a counsellor – someone that I can off-load to without upsetting them. There is nothing wrong with asking for help and to realise that you are not superwoman – you can’t do it all on your own all of the time. And I will come out stronger for it in the end.
I have been experiencing some headaches, light headedness and some disorientation since my last results which showed a change of 0.5 mm and I hadn’t had or noticed any ‘symptoms’ in the previous 3 months. So is it tumour growth, is it scarring or is it just my norm? I have scar tissue in my brain and whilst they have kept it to the minimum by doing the gamma knife there will still be damage around the area of the tumour which can cause it’s own set of issues. That’s the uncertainity – noone can tell me at the moment so my next scans are in August and for the first time I am actually not worried about them at all. I will have a better idea of what I am dealing with and I can move forward. So roll on scan time!!
The lockdown restrictions are becoming less for people in the extremely vulnerable group. I can see up to 6 people socially distanced and in a few weeks I can go back to work and things are returning to ‘normal’. I have been out about 3 times since things are relaxing! It is so strange – for the last 15 weeks all I have wanted to do was to go out etc and now that I can – I don’t really want to!! I’m not worried about catching covid-19 (I never really have been) but my world has been within my own four walls for quite a while now and I don’t know if I am ready to rejoin the world again!!
We have all made sacrifices to keep ourselves, loved ones and the vulnerable protected, and we still are. There is still no cure, no vaccine, but I have to let myself get back into the world, I want to get back to this new normal, with whatever precautions necessary. A little at a time – Stay safe everyone. ❤😷🌈
So it all happened in May! I turned 50!! Bloody hell how did that happen!! I can’t believe it!! Where has the time gone – literally! I don’t think of myself as being 50 and I don’t feel 50 – but what should it feel like? Age really is just a number these days and people are generally living longer. When I was younger I never wanted to get old! We thought 50 was ancient! and being 50 years old was a life time away, but now here I am embracing my 50th year and hoping I will live forever!! Lots of people have celebrated their birthday’s during lockdown and my family and friends really did go over and above to make it memorable. I was quite overwhelmed and had a fabulous day. One I certainly won’t forget – thank you to everyone who played a part – I love you all!
I also had my scans in May – it is now 9 months since my gamma knife finished (10 months since I was diagnosed with my brain tumour) and 6 months since my chemo finished. It is hard to believe that on the 5th July it will be a year since my diagnosis. Something my brain consultant said right at the beginning of my treatment is never far from my mind. He told me that 60% of tumours grow back within the first 6 to 12 months. The percentage of those that don’t go grow back was much higher than I expected and why shouldn’t I be in that percentage??
Another trip out and this time in to Bristol to have my MRI scan done. My consultant did my results appointment over the phone due to the covid-19 situation and it wasn’t quite the news I was expecting. I have had no dizzy spells, no balance issues and no headaches. In the past 3 months I have felt (and still do) really well and so expected my results to be the same as 3 months ago – with no change. However, he told me that there had been a very slight change of 0.5 mm. This is tiny, I tried to measure it, but when it comes to tumours any change needs consideration. He said that this is the time they expect to see changes but he is unable to tell me if it is the tumour regrowing or whether it is scar tissue. He said that there is nothing to worry about at this time and so the plan is to monitor and re-scan in 3 months. So it is not bad news just more uncertainty. So my next PET/CT was next and to be honest I was worried about this. I have had a lot of pain in my shoulder joints, upper arms and I don’t have the same strength as I was once did. It was painful to lift my arms above my heads, taking the tops of jars and even turning over in bed, so of course in true Ali style I had been researching bone cancer – as this is one of the more common places breast cancer can spread to. Once you have had or have something like cancer it can be easy to think that any twinge or pain could be related to it and despite my positive, fighting outlook on my cancer I can be quite a pessimistic person!! I call it being realistic!! But I only had to wait 2 days to hear from my oncologist and he phoned last Wednesday. He told me that I have continued to maintain a full metabolic response with no evidence of any metastases to the bones. Well this was amazing news and I was so relieved that the pain I had was not due to me having developed bone cancer. I was still okay and everything in my liver and lungs is fine and all my blood tests, cancer markers etc are all within normal ranges. So the pain in my shoulders etc. is still unexplained but probably related to the menopause, treatment side effects and getting older!!
So what do I do? Do I spend the next 3 months wondering, worrying about what is going on inside my brain? Worrying about the what ifs and might bes? My oncologist said to me a while ago, live for today and don’t worry about the what ifs? And although this is easier said than done that is exactly what I intend to do – or at least try to do. The Penny Brohn approach is very much about living in the here and now which is an amazing philosophy to follow but not always easy to do. Not to dwell on what may be or what might happen. I could spend the next 3 months worrying and the results could be the same as they are today or things could have progressed. Either way we will not know until August. We do not know how long we have on this earth and I don’t want to waste time worrying about things that I cannot control. So I will try and concentrate on what I can control and that is changing my mindset to living in the present. Enjoying life while I’m in it. While I can.