I haven’t posted for a while. I’m still here, just up until now there hasn’t been much to report really! Plus I’ve been quiet busy trying to get on with life as best I can….
We’ve had some much needed family time together, Freya helped Santa around our village, we’ve had fun in the snow, lots of doggy walks and snuggles. I finally managed to finish Josh’s Minecraft quilt in time for Christmas – which he loved! We even managed to decorate Freya’s bedroom and we made a huge dreamcatcher for her to ward off any bad dreams!
But now, to stop me just bumbling along…….
Unfortunately (or may be fortunately in the long run), these last few days I have received some important news that I need to share.
If you’ve been following my blog you will remember that last year I was discussing diep surgery and removal of a painful implant. My cousin had just been diagnosed with a breast cancer lump too. I had a dilemma as I really wanted to have both the boobies removed and rebuilt as preventative as I was convinced that the cancer could be hereditary as my mum, my auntie June and my cousin had all had breast cancer. Not to mention more further related relatives. My team agreed that it probably was genetic but they didn’t have the tests available to be more specific and to back it up. Evidence was needed. Plus it wasn’t solely up to them to make this decision – this depends where you live and if you are NHS or private (obviously private you get whatever you can pay for). For me, to get this decision made it had to go to a board meeting that only happened a few times a year and be backed up with solid evidence – my team needed to put a case together! This is a good thing really as it’s a group discussion to work out what is the best at that time and what is possible – they discuss and weigh up all the pros and cons. So, because of this my surgery was delayed, I had genetic testing, counselling, meetings etc. I didn’t fall into the category for automatic genetic testing on the NHS as I was over 40, we didn’t have ovarian cancer directly in our family and my sister had escaped cancer so far – lots of boxes have to be ticked. But my team managed to get me on a study running that would test me for BRCA 1, BRCA 2, and PALB2 genes – it took a little longer to get results but this was the best thing to do – all tests came back negative. So I accepted that, and the decision was made to do just the one side.
PALB2 is a relatively new abnormal gene that has been found that increases the chance of developing breast cancer considerably. I won’t bore you about the ins and outs of genetics but I’m sure you’ve all heard about the BRCA genes and Angelina Jolie and the preventative surgery etc. If you want to read more take a look at www.breastcancer.org/research-news/abnormal-palb2-gene-increases-risk or the http://www.nhs.co.uk – lots of info on line and more is being discovered with the PALB2 so you may see bits in the news. I am one of the people helping with this research study now!
So I received a letter totally out of the blue that further testing had been made due to more updated testing methods and systems and it had now been found to have an alteration. Oh! This meant my result was now positive – I knew straight away that this was going to change a few things. You can always tell with the NHS when you get a pretty urgent hospital appointment through and they want to see you face-to-face. Still 4 weeks away though! So I called the genetics department in London directly and spoke to the consultant and she explained that it was important that my mum and my sister needed further testing as soon as possible. They knew the PALB2 was in me but they need to do further tests to confirm it had been passed down from my mum, and to see if my sister had it too. I have had to break this news to them. And to my Freya. And my boys. Men can get breast cancer too. This could also potentially affect my cousins and their children too.
Once my mum is tested and we know more – if it is definitely passed from my mum’s side, it will also be important that my cousins get tested. So cousins – here is the copy of the letter you will need that has the contact details for you to get your doctor to refer you on the NHS for PALB2 testing (Emma is on maternity leave so it’s now Dr Ahmed, who is just as lovely)….
I am thinking of this as positive. As deep down we all knew it must be hereditary. At least we know for sure now and my family will be closely monitored. One test at a time at the moment – difficult to stop our minds from running away though. Freya won’t be tested until she’s a lot older and things are changing all the time so I’ve explained this to her. She will just need to be aware from an early age – it doesn’t seem fair but that’s how it is for my family now. Breast Cancer is definitely affecting us all and it’s a horrible feeling.
And what now? Well I spoke to the Genetic consultant directly and looks like instead of a ‘tweaking’ op it will now be another big ‘removal’ op for me – risk reducing mastectomy. Not sure when as this will be discussed at the big meeting in March. More meetings and discussions and planning will be needed. February/March is going to be busy!
The consolation I have is that there wasn’t enough fat from my stomach to do both boobies last summer anyway -would have been really gutting if they’d thrown away half my stomach tissue! At least they’ve found out now and hopefully boob can be gone before more cancer comes back – bit of a waiting game here. I am feeling a little anxious about this to say the least. My consultant has said to contact him straight away with any changes at all in the remaining boob. I seriously feel like a ticking time bomb now. But I hopefully have time to try my best to keep growing more fat in the hope Mr Griffiths may be able to use from my bottom or my inner thigh. Lucky I love porridge eh! Trying not to think of the bad stuff. Reality sucks big time.
And just as I was starting to plan the future a little more. Mum was going to take us girls on holiday this year. All shook up now!
So, it’s coming up to 3 years since my diagnosis. I feel lucky and thankful but it’s a struggle as it’s still so ongoing – especially now.
So how am I in myself? I’m doing as well as I can be. I still have to live with a lot of pain – throbbing joint and bone pain, fibromyalgia muscle aches and fatigue, menopause symptoms (ongoing – hot flashes, light headed, nauseous, headaches, mood swings etc), racing heart beat, post-op pain – mostly if I over do it I have a lot of pain across my chest and stomach – not sure if this will ease with time but I hope so. General nerve pain – especially in hands and feet. Basically there isn’t much that doesn’t hurt – I am a total basket case. I can carry on with a list of ailments but I am sure you get the idea, and add in all the emotional anxiety then it’s pretty pants really. Sounds worse seeing it on paper – bit like when you open the piece of paper with medication that has a list of side effects on that you don’t really want to look at and acknowledge.
I am getting really good at coping, carrying on and ignoring – not sure if this is good or bad but it’s working for me. So long as I don’t stop. Stopping is painful – sitting/standing in a position for a long time is so bad for me as I basically seize up – it’s even difficult for me to sleep in one position so I have to move a lot throughout the night and get up a lot to move and add in the hot sweats too! omg! I can almost block out the pain to an extent now if I keep busy and I can act like I’m pretty normal so most people don’t notice which helps me too. ‘Normal’ is good. The mind can be amazing and I think our tolerance as humans is astounding. I continue to meet some amazing people that I can now really relate to – and a lot of them are coping with a lot worse than I am. One particular lady I work with really humbles me – I draw so much strength from her and I hope I help her a little in return too – Zintra x
To cope with my ‘new normal’ me I found I was often taking conventional meds to either dull the pain or help me sleep or whatever – these all have their side effects and very addictive. As many of you know I worked in a pharmacy for a while and I learnt so much. I also saw a large number of people who were on huge amounts of drugs because they needed even more to combat the side effects of the drugs they needed to be on! Also people who had become addicted to their medications. I’ve always been really aware of this and been really careful myself but I knew that I needed to do something to help myself with this long term and constant pain I suffer. I knew I didn’t want to have to depend on conventional meds with the terrible side effects – basically when I take meds to help ease pain to help sleep I wake up really tired and groggy. If I take any during the day I am not safe to drive which means no going to work so I try and work through the pain and keep going. Plus your body works up an immunity so they don’t work so well and hence larger doses are needed. I wanted to find something natural if I was going to need something long term. Every medical doctor I see seems to agree with me – but all they can do is prescribe meds – they can’t do any more – I feel things need to change – maybe one day? So it’s been up to me to help myself.
Things had got desperate for me, I had been seriously looking into growing my own Cannabis plants to learn how to produce a CBD medicinal oil for my own use – but this worried me a little as it’s a bit illegal to grow plants here.
While beginning my research I kept finding Copaiba oil being compared to CBD and how it has recently been found to have amazing benefits to ease pain and to calm and reduce anxiety. Then one of my friends mentioned she was using for her migraines and had I heard of it? I already belong to Doterra Essential Oil group – these are food grade organic and regulated essential oils – they are the best I have ever used and worth it. Anyway, I asked my contact about the Copaiba oil and if she could get hold of some for me as it wasn’t available in the UK via Doterra yet. I really wanted a food grade version as I felt I needed to try this oil topically but also to take in tablet form for widespread pain. Everything was pointing it out to me……
If you’ve been reading my blog from the start, or know me personally, you will know that I like to experiment for myself. All comes from being a reflexologist and helping others to help themselves but also proof that it works!
I am sceptical until I’ve tried things properly for myself. So for the past few months I have stopped using conventional pain relief meds as my first point of call. Obviously I have to take the Exemestane (keep cancer away drug that causes so many awful side effects for me) and obviously there are times when I need conventional drugs as well. Sometimes I am in so much pain that I have to take something more – even if it’s to dull the pain so I can sleep as without sleep everything is even worse! So I needed something to compliment and work with – I think that’s important – balance!
So back to my experimenting. Copaiba oil has many benefits but the one I was interested in is to calm sensitivities and pain receptors, reduce inflammation, relax, aid sleep and it also works as a magnifier to more expensive oils such as frankincense, and lots more! I have been having some great results that is so exciting. I almost don’t want to tell people as this oil isn’t available in the UK until about May. But the good thing is when it is available here it won’t be that expensive either (about £30/£40 for 15ml which lasts for months).
So how am I using it? For topical pain to ease my joints – I apply one drop neat to each painful joint – this gives almost immediate relief – it really does work well it is quite unbelievable. I have continuous throbbing pain all over my body which varies and this oil is definitely helping to take the edge off this pain. It’s enough for me to get some sleep and enough that I can continue on a daily basis and as far as I’m concerned I haven’t had any adverse side effects from it at all. On bad days when the all over pain is so bad I add a few drops of Copaiba, winter green, eucalyptus, lavender to my bath with Epsom salts and just relax. It’s not magic and it doesn’t work all the time but it’s definitely the best natural product I’ve tried so far – and maybe my brain is super powerful and it just ‘thinks’ it’s helping – who knows, but it is.
I also have a mixture of some other oils for pain relief and inflammation in a roller bottle (eucalyptus, rosemary, marjoram, winter green etc) or I use the Deep Blue blend and the Copaiba oil helps these oils work better – like a magnifier. I also use frankincense topically across my chest as an anti inflammatory and to hopefully help keep cancer away! (I can’t say if this actually works though but I feel it doesn’t hurt to try – it smells nice too).
I also put 2 drops of Copaiba, 2 drops of Frankincense and 2 drops of Rosemary into a capsule and take daily. This helps internally and for all over pain.
Everyone is different and everyone responds differently. You can’t believe everything on the internet. Who knows if it reduces risk of cancer or makes cancer go. I can’t tell you that. But I can share with you what is helping me – most of the time. And it doesn’t take much to knock me over the ‘just coping’ edge, even using the oils there are times when they are not enough. But they are definitely helping. Without a doubt. And at the moment Copaiba is one of my favourites!
Please follow our Facebook page to find out more of how I am using these wonderful oils that I now couldn’t do without! Plus we will be posting ways to use the oils and when we can get hold of Copaiba in the spring here.
Meanwhile, keep positive – all these ‘blips’ add to our strength. I am going to be pretty strong eh?
WHEN SOMETHING BAD HAPPENS YOU HAVE 3 CHOICES, YOU CAN EITHER LET IT DEFINE YOU, LET IT DESTROY YOU, OR LET IT STRENGTHEN YOU.
I know what one I will be choosing……will update as soon as I know more.