Over the next few months I began to get into a routine of my new life. I went swimming a few times a week and planned to complete a sponsored swim by swimming 30Km’s in 30 days later in the year. There were a few fundraising events held by family and friends as this year I had picked Second Hope (www.Secondhope.co.uk) as my beneficiary following on from such a successful year in 2016 when family and friends raised an amazing £23,000 for Inflammatory Breast Cancer, all of which was handed over to Dr B in Birmingham University which was the only research lab in the whole of the UK conducting research into Inflammatory Breast Cancer.
I applied to be a volunteer on the Cancer Research Consumer Forum to provide the Health Service and the Clinic Trials Networks feedback from a patients perspective. This involved attending meetings with other patients, clinicians and researchers which I found really interesting. It was surprising to see the volume of research and patient participation which was going on. I would have been guilty prior to my own diagnosis of being oblivious to all this I suppose we are all guilty of burying our head in the sand but feel we are contributing and supporting research by putting a few coins into a money box or paying a monthly direct debit and by no means am I boohooing this generosity as yes every penny counts. I felt I wanted to raise awareness and funds specifically for a local university who had a lab specifically researching the brca gene mutations. I decided a Black Tie Gala Ball would be appropriate so started planning the event by getting quotes for room hire and food, designing and printing tickets, collecting ballot prizes and items for auction with the help from a few friends from the BRCA support group and my friend.
We were invited to attend the University lab and meet the Dr in charge of the research lab. It was a very informative morning and we all could have listened to him talk for hours. Having seen first hand the work these Researchers do I believe they are totally under appreciated for their work which is not just in cancer research but research which is being conducted into MS, Alzheimer’s, diabetes, cardiovascular diseases and lots more. Without the skills, expertise and most definitely the enthusiasm of these people the doctors would certainly not be in a position to save so many lives.
I know there is a lot of scaremongering about big pharma’s not wanting to find a cure for cancer and this is another phrase people like to tell cancer patients. Personally I had never given it a second thought although now I see these accusations must be a real insult to these Researchers who spend every working day for years investigating medicines against various cancer types. If any part of that statement were true these scientists would be extremely demoralised as all their research was a fraud as they don’t really want to find a cure for cancer which is absolutely absurd.
Anyway all the Researchers hope that in the future cancer will be a chronic illness which people will manage with medication just like diabetes, MS and cardio vascular disease. Already I have met a number of women on my support group who have been living with Stage 4 cancer for 5, 7, 10 years. It would be great if this was the case for most if not all cancer patients. However to maintain this it will obviously cost the NHS billions of pounds of which they do not have. So realistically we all must take some responsibility for this, perhaps being a bit more selective on what we ask the doctor to prescribe us. Do you really need a prescription for paracetamol or heartburn tablets or gluten free bread??
Likewise for actually going to the GP, do you really need an appointment for a cough or cold which will clear up in a few weeks. The rule of thumb with cancer patients is if you have new symptoms which haven’t cleared up after 2 weeks go to your GP. So surely if everyone used a common sense approach this would lessen the burden on GP’s. However taking over the counter medicines and improving our diets to include lots of fresh fruit and vegetables especially in the winter months, and some old wives tales are the best remedies.
When you are diagnosed with cancer its amazing how many people become experts in the disease and give you advice on what to eat, or what not to eat or drink which can sometimes get very irritating. However a Polish Dr my husband had been doing work for had told him to get me good organic fresh turmeric, ginger, honey and lemons. You would be surprised by the health benefits of turmeric or curcumin what its also known by as well as all these ingredients together. I have been taking this for over a year now and I do think it has helped me especially when my immune system has been low. I would recommend anyone who is going through cancer to take this, I’m not saying its a miraculous cure but its good for the body.
After conducting a lot of research I also started taking cannabis oil which I ordered online from a shop in Amsterdam. I took it every night and washed it down with my turmeric juice. Again I was under no illusion that this was going to cure me but I had read so much about cannabis oil and seizures so I felt it was worth taking if it would reduce the likelihood of me taking further seizures which would mean I could get my licence back which I had to surrender to the DVLA. I told Dr J about taking the oil and was surprised by his reaction of not saying anything one way or the other, I have told all my Drs I am on this and actually now most ask are you taking any alternative medicines and do not show any shock or disgust when I tell them I am taking cannabis oil.
Ok so over the next few months I was feeling really good, exercising and following a healthy eating plan. I was looking forward to a long weekend in Majorca with B and my sister at the start of May. Then I had my official retirement date and a get together being arranged by my friend and work colleague. When we had talked about when I was leaving and what I wanted to do I said to her sure you can organise it. She said yea “ok but knowing you, you will tell me where it has to be, when it has to be and who has to be invited.” Oh she knows me so well.!!
I had an appointment with Dr J at the end of March so told him about pain I had been having in my left rib cage. I had also had my full blood count taken at the GP’s recently which had shown an elevated liver function so DR J told me I needed an ultrasound of my liver and sent me for a X ray of my chest. I was also waiting on my follow up appointment for brain MRI. So once again I was waiting on scans and results….. scanaxiety!! just part and parcel of my new life!