Ok. So, many of you know that I worked as a researcher before my cancer diagnosis. In fact, this role saw me work for a number of NHS health boards, the Scottish Government and some charities. The main focus of my work was ‘person-centred care’ and how to get patient’s voices heard in a system which, often, seems designed to do the complete opposite.
Since my diagnosis – and extensive experience as a patient with a critical health condition – I have learned that if you want your team to treat you like a human (and not a disease or medical diagnosis) then, quite simply, all you need to do is treat them like a person in return!…for more on this please see my blog post entitled “I’m That Patient”.
Now, I know some of you have shitty members of your health team and no amount of seeing them as a person is going to fix that. Some people are just assholes and, in this case, clearly in the wrong job. That aside, when members of your health team want to help you, which 99.99% of the time is the case, then the best thing you can do is help them to help you.
Quite simply, it is a motherf*cking partnership that we are striving for!
So, with that in mind, I requested an appointment with my oncologist. Now, yes I have just seen her only last week when she gave me the news that my cancer had recurred but, as I am now exploring the possibility of alternative and complementary therapies it felt imperative that she be involved in this process.
Now, for many cancer patients it can be a nervous moment when you have to discuss what alternatives you are doing (or hoping to do) with your oncologist. Thoughts of doubt can often fill your mind and you may put off the discussion. In fact, many people tell me that they won’t tell their oncologist what alternatives they are trying for fear that their oncologist will stop treating them. (Note to any oncologist reading this: please encourage and support your patients to have these discussions).
HOWEVER, it is vital(!!) that you tell your oncologist because: A. It allows a relationship built on trust to develop between you; and B. Some alternatives can negatively impact traditional treatment (true story!). So, please always be honest to save yourself the risk of doing yourself more harm than good when you may already be in a critical situation. Remember, your oncologist has dedicated their working career to trying to save your life. Think about that. Let that thought sink in for a minute. They are on your team! (If your oncologist is one of the aforementioned assholes and really isn’t supportive then change them. Your health is in your hands. Seriously!)
Now, ranting over, I met my lovely oncologist today and we had a lengthy discussion about my thoughts and feelings around various completely theories I’ve been trying or that I am considering trying. Despite all of the horror stories you may have heard, my oncologist did not judge me, she did not criticise me, she did not tell me I was an idiot. Instead, she listened and she offered informed and educated guidance…in fact, she helped me navigate the minefield of cancer treatment options including alternatives, trials, private health care and so on.
Here is just a brief overview of some of the things we discussed:
Antibiotics following a Splenectomy
I am not shy about my feelings on taking antibiotics for the rest of my life because I had a splenectomy in May 2016 as part of my cancer treatment. Without overly ranting about this again (Iwrote a whole blog post about this already), my basic view is that antibiotics are bad for your gut health, which is a massive part of your immunity and I don’t want to undo all of the hard work I put into my diet my stripping my gut of all its good bacteria.
So, I had an honest conversation about this with my oncologist and I made the decision to stop taking my antibiotics. Now, let’s get something clear, my oncologist DOES NOT support or encourage this decision as it goes against medical guidelines. However, despite this, it is still important that she knows about this decision so that if, worst case, I develop an infection, she knows that I don’t have any maintenance antibiotics in my system. Also, it enabled her to guide me on what to do should I develop an infection – start taking my antibiotics and seek medical help.
This journey isn’t always about our medical team agreeing with our choices. Instead, it is about them knowing our choices so that they can make informed decisions about our care based on the full picture.
I stop taking my antibiotics tonight (exciting and scary times) and so it would be great if sickly people could avoid me (even more than usual)! Thanks xxx
As I mentioned previously, I am starting acupuncture next week. By discussing this with my oncologist I was able to establish what lymph nodes I had removed during surgery so that the acupuncturist can adapt my treatment accordingly. This is a prime example of the importance of a complementary therapist needing the full picture from the medical practitioner and, this, the importance of discussing complementary therapies with our medical teams.
My instincts have long told me that folic acid is involved in the spread of ovarian cancer. Prior to my diagnosis I was on double dose folic acid as my husband and I were trying for a family and I have a gluten allergy and medical guidelines recommend an extra strong dose if you have any ‘gut’ issues (this was prescribed by my, then, GP). My instinct has always told me that this played a part in my cancer developing so quickly.
So, recently when I reviewed my supplements and I noted that the new ‘Vitamin B Complex’ tablet I was to start had folic acid in it, my instinct was once again screaming ‘NO’ at me. I did some research (prompted by a serendipitous conversation with a pal) and discovered that ovarian cancer cells have extra large folic acid recaptures and, in fact, this is how some new targeted treatments for this type of cancer work – they ‘trick’ the ovarian cancer cells into thinking they are folic acid, when in fact they are something else designed to attack the cell.
When I discussed this with my oncologist I began to realise that it was not appropriate to take folic acid in supplement form because new research indicates that ovarian cancer cells need extra folic acid in order to grow and develop. Scary stuff eh?!
This is a prime example of all cancers being different and the importance of discussing your supplements with your oncologist.
Through today’s discussion I have requested a number of blood tests that will aid my personal understanding of my health situation, and also agreed to a number of blood tests that will aid my oncologist’s understanding of my health situation.
So, for me, we are testing my vitamin D, Iron, magnesium and B12. For them, we are testing my blood count and my ovarian cancer markers. For both of us we are testing my folate (which relates to folic acid).
By working in this collaborative way we are both getting a clearer understanding of my health and how my cancer is currently behaving in my body. I am excited to have this information…I’ll blog about it in time.
We discussed much more, some of which will feed into my treatment choices over the next few months…all of which I will keep you updated on. However, the main thing I want to get across (in case it isn’t quiet clear enough) is that it is fundamental to your optimal health that you discuss *everything* with your medical team. They want to help you and they can only do this if they have a full, honest and clear picture of your own personal treatment plan.
Only together can you have the best possible hope of returning your body back to wholeness.
I am eternally grateful to my oncologist, surgeons, nurses and entire medical team because, quite simply, without their care and compassion I wouldn’t be here today.
Please grab your medical relationships by the balls and take the first step in creating your own partnerships.
It’s f*cking awesome when we can work in this way.
Love and light, Fi xxx
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Disclaimer – please always speak to a specialist practitioner before making any changes to your treatment plan. I am not a trained medical professional and this blog serves only to share my personal experiences.