Hello all my BB followers, family and friends.
So last week was scheduled to be my 6 month post op MRI scan...it kind of went like this:
Nurse: "Have you had your bloods tested for renal function?"
Me: "Er, No?!"
Nurse: "Well in that case we can't give you the contrast injection"
Me: :*(
So yes the above did happen. I had a partial MRI scan without contrast and during this scan the lovely nurses made contact with my doctor who would not give out blood information over the phone but did fax through my most recent blood results but unfortunately she hadn't tested for renal function (kidneys) and this has to have been done within the last 4 months to be valid.
Although I had all of my blood tests at the hospital in October 2013 unfortunately they are now out of date. The frustrating part was that I had only had a blood test the week before as I have been experiencing a lot of flare ups with my tummy and my doctor wanted to rule out things such as coeliac disease. Preferably I wanted to have a sigmoidoscopy as my family have a history of Ulcertaive Colitis and other bowel conditions but I think what I am experiencing is the "you're only allowed one condition" style treatment.
This makes me quite frustrated because as a lot of you will know I fought hard for a second opinion and also I went to my doctors around 7 times before I had my first (and only so far thank goodness) grand mal seizures and then my diagnosis- in between the diagnosis I was told "At very worst you have epilepsy" so to then be told it was a brain tumour (after grand mal seizure number 4) was a big shock to say the least.
If early diagnosis is the prevention (and possibly the cure) I want to know why some doctors feel they won't take people's health complaints seriously. Ok I appreciate perhaps some patients may border on the more hypochondria side but when a young person repeatedly sees their doctor, or for that matter is admitted with a first time seizure (or set of seizures) a CT and MRI scan should be ordered. I have been told that the above is basic 'guidelines' but for me it didn't happen that way, it took x 4 grand mal seizures and 2 hospital admissions before they finally decided to do a CT and MRI scan.
Between my family and I we have also found that an MRI scan costs approximately the same as x 2 standard '5-10 minute' doctors appointments- so why not let people be scanned for peace of mind?? All the adverts on TV say 'Be Clear On Cancer' and 'See Your GP' but as a general consensus amongst my family and friends, living across three counties, this has not always been our experiences. I cannot generalise here as I have had outstanding care from previous doctor's, and I am aware the good ones are out there (after my Mum's recent experience with 111 and spending a good proportion of time with the doctor!) Anyways this is all past now but I just wanted to have my say. (Getting down from my soapbox!)
I watched a very good documentary last night on BBC3 called 'Dying To Live' about a girl named Kris who was diagnosed with Stage 4 terminal breast cancer aged 23. Kris has gone on to start the well known charity Coppafeel http://coppafeel.org/ Although there were parts of the documentary that were hard to watch and made me feel very sad, it was also uplifting and inspiring to see a young lady, fighting for her life, against the odds. She has survived 5 years post diagnosis and she continues to fight- she is working currently to persuade the government to introduce cancer awareness into the curriculum- I think this is a fantastic idea and I support this too. For anyone interested in watching the documentary please see this link http://www.bbc.co.uk/programmes/b03zf3tg (apologies to my international followers if this does not work)
So after my above MRI scan I met my friend Andrew for a long overdue catch up- thank you Andrew for being my saviour that day- it was all very impromptu as my Mum put her back out on the Monday and was not well enough to travel with me on the Wednesday and unfortunately there was not enough time for anyone else to arrange to come with me, but all was fine and I enjoyed catching up with my good friend.
I had bloods taken last week at the outpatients department to ensure that when I go again in April, I can have the contrast MRI scan in the morning followed by my outpatient appointments and then the results of the scan as it will be fast tracked that day. I am positive that all will be fine as expected so of course I will update you all as soon as I can. Thank you to everyone for the positive vibes :)
So before I sign off there is one more important thing I wanted to share which I was going to mention before but I didn't want to talk about things previously that I felt I was not so well educated in.
Diet- I started out using the 'David Servan-Schreiber- Anti Cancer: A New Way Of Life' book as a guide for me- Thank you to Sally for this! This has been a fantastic read to help educate me all about foods, environmental factors and lifestyle. David has first hand experience living with brain tumours and defied median survival by implementing a healthy, Mediterranean based diet (no processed foods), exercise, avoiding unnecessary chemicals and leading a peaceful, relaxed lifestyle implementing things such as meditation. You can see and read more about this book here: http://www.amazon.co.uk/Anticancer-A-New-Way-Life/dp/0718154290
Some people adapt the 'Anti Cancer' diet to suit them or add in/take things away depending on how they want to or from looking at perhaps more recent research. There are also supplements or other things you could add into your diet- currently I am not taking any supplements but I may introduce a multi vitamin (mostly for vitamins B and Omega/Fish Oils) but I like to get my vitamins where I can naturally.
Other types of diet I have studied include 'The Rainbow Diet' and 'Ketogenic Diet'. Overall I personally aim for wheat free, dairy free, meat free and gluten free where I can and occasionally go egg free too depending on what I am making as I often need eggs to bind when I make my healthy cakes- I am always happy to share recipes!
What works for some may not work for others but I believe it is worth exploring for a holistic and complimentary approach. I would advise always seeking the advice of your Health Professional and/or Nutritionist before embarking on any dietary changes. When I say the word diet I essentially mean a more healthy approach as opposed to the traditional concept of a 'diet'.
A great website my Mum discovered recently was called 'Deliciously Ella'- Ella has some great recipes and you can also download her app too so I would recommend checking out this website here: http://deliciouslyella.com/ Ella doesn't write necessarily from a cancer perspective but she is motivated by her own diagnosis of a chronic condition and also to prevent other diseases which in turn keep her body strong.
Other things which I am into at the moment include finding more natural products as 60-70% of what we put on our bodies (make up, face cream, body cream, deodorants etc) are absorbed- more so under the armpit so I am currently trying to find a aluminum free deodorant which also gives good protection! When I have found one I will let you know. The next few sites are mainly American research but you can try typing in your current products that you use and see how harmful they may be on the scale when using longer term:
http://www.ewg.org/skindeep/
I am also loving oil burning with essential oils and purchased a book from 'Holland and Barrett' today entitled 'Aromatherapy- A Guide For Home Use' by Christine Westwood. I think it cost around £1.99 but you can purchase it here slightly cheaper: http://www.amazon.co.uk/Aromatherapy-A-Guide-Home-Use/dp/0951772309/ref=sr_1_1?ie=UTF8&qid=1395945594&sr=8-1&keywords=aromatherapy+christine+westwood
As mentioned previously I am going to keep promoting my good friend Mark's Just Giving Page as he will be running the Berlin Marathon in aid of my hospital's charity 'The National Brain Appeal' this September- I have added a widget to the top right hand side of this page if viewing the full website- if not you can check it out here: http://www.justgiving.com/Mark-Gilmartin1
We are so near the halfway point so thank you to everyone who has donated so far and many thanks to those who have pledged or will be pledging shortly.
Much Love As Always,
Gem xx
