Acupuncture and Complimentary Treatment

“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.

How are YOU?…

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

Merry Christmas and Good-bye to 2020!

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.

What a couple of months…

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!

August 2020

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.

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One Year Anniversary

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. ❤😷🌈

 

 

 

 

Scans, Results and Reality..

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. 20200525_202000

Checking in

The last time I updated my blog was 42 days ago – the 22nd March 2020, and was my first official day of isolation – lock down – quarantine – whatever you may call it. My text arrived from the NHS saying that I was in the high risk category of severe illness if I should catch coronavirus and to remain home for 12 weeks. That ‘get out of jail’ date will be 15th June 2020. How bizarre this was. It was such a strange feeling knowing you’re classed as vulnerable yet I am feeling well, I feel great in fact but now everything was changing. My life had changed again by things that I had no control over – it was all very surreal.

My sister said ‘We are all riding the same storm but we are all in different boats’. Which is a good way of looking at it. Everyone’s circumstances are different. Everyone copes with their circumstances in their own ways. Many families are in a similar situation to my own and many families have to deal with a great deal more. People have lost family members and have not been able to be with them to say their goodbyes, family members having to move out of their homes as keyworkers  so they can continue to work and protect the vulnerable members of their family. It is a different experience of us all.

It is good to see that in times of crisis we see many people at their best pulling together to support one another through this difficult period. I have clapped and cheered, shouted oggi oggi oggi!!, and banged my saucepan for the NHS and other keyworkers every Thursday – like so many of us. It brings a shiver every time and I am proud to stand with my neighbours to say thank you – all be it hanging out my lounge window!

I have only been out twice and both times it was for my treatment – I was so excited! I put on something other than pyjamas or joggers!, put my make up on and even my false eyelashes – all for 2 hours of treatment!! Thankfully I am still able to continue with my treatment and all appears well. The nurses are amazing and keep everyone’s spirits up despite having to wear the protective gowns, masks and goggles.

Life continues as best it can. We are getting used to this temporary new normality. But we mustn’t become complacent. It is now 4 weeks since the lockdown was announced and subsequent extension. I am not a politician, doctor or scientist, and I do not want a debate about the rights and wrongs of restrictions and who or how the rules should be followed – I am an ordinary woman who has been forced in to quarantine with stage IV cancer who wants to live life to the full – as we all do – and not to be restricted to my own 4 walls.

This situation has made me appreciate all sorts of things that I would normally take for granted, even the simplest thing as being able to answer your own front door!

It has come up to that time again – the MRI and PET/CT scans. 3 months goes so quickly! On Monday I get to go out again! This time for my MRI scan in town. I am really grateful that this is still able to go ahead and hasn’t been delayed. The result will follow by a telephone consultation with my consultant. Fingers crossed it will still tell that the tumour is non-active and nothing is happening – Scanxiety has been setting in for the past week or so – and I haven’t been in a great place. This scan will be 9 months after my brain tumour was diagnosed and my gamma knife treatment finished. My Doctor said that 60% of tumours come back between 6 and 12 months. I feel really well with no headaches or dizziness and I am being ‘good’ to my body (apart from flipping sugar!!) so hopefully the scan results will be positive. My PET/CT scan for my body is on the 18th May and again I am hoping for more positive news. I will keep you posted!

I am currently writing this sat in my garden. The sky is blue, the birds are singing, dinner is prepared and I am pretty relaxed (for once!) Today is a good day. I am feeling lucky surrounded by people who love me. So guys, feel blessed, we are safe, we are loved.

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It’s a Mad World ….

2020 is under way and spring is beginning to raise its head. You can see the spring flowers appearing and a little glimmer of sunshine giving us the promise of warmer weather to come – but – our lives have been turned upside down and we are in a period of uncertainty and uneasiness.

It is at times like these that you see the best in people but we also see the worst and definitely over the last few days and weeks we are definitely seeing the worst in some. I don’t need to go into detail for we all know we can’t get toilet roll, eggs, paracetamol among many other daily products! Why oh why have people started panic buying? There is no need and their unthinking and selfishness causes panic in others who then try to get essentials – but can’t – and so it goes on. These greedy, selfish people have no consideration for others, and it is the vulnerable and elderly who are suffering the most.

Government guidelines advice social distancing, so why are people still congregating or crowds gathering for example along sea fronts today because the sun has come out?  If people do not heed the advice of the Government to not go out and reduce social interaction the UK could become the next country to go in to total lock down. THIS IS NOT A GAME.

Now I am going to be completely honest but until recently I didn’t really ‘get it’. I joked that I must be living on a different planet! I have been so strong and determined to fight and win against my cancer and because of this mentality I thought no ‘virus’ is going to get me either, but reality sets in for all of us eventually. I am a little concerned – but I am following the guidelines and it has been a difficult decision but I will now be working from home. Of course I don’t want to  but I don’t want to become ill either and so this was a hard decision – and not because I am being selfish or naive but out of a concern for my colleagues who still have to continue in the office. But I am heeding advice and I have everything I need to work from home so we shall see how things go.

My youngest daughter however does not have that luxury as she continues to work tirelessly for the NHS distributing and managing the ambulances on our roads. She has my complete admiration for how hard she and her colleagues work, working long shift continuing to support the vulnerable and by god it is not any easy job. So these greedy, selfish people should spare a thought for the NHS workers who are helping look after YOU when you need them – and that time may be sooner than you think.

Please stay safe and look after one another.

 

j

 

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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