Thursday saw us mark the first official mBC day in Ireland. Marie Keating Foundation,Europa Donna Ireland and the Irish Cancer Society came together to hold this event in Cork. We had an excellent presentation by Oncologist Prof O'Reilly followed by a panel discussion in which I was involved with two other mBC patients Olive Saughnessy and Josephine O'Brien. It was so nice to share our experiences.The atmosphere in the room was amazing, patients,their family and friends brought together and given the opportunity to talk about issues that are important to eachother with one another. We promoted EDI's facebook page more which is going to be such a valuable tool for patients as the membership increases. The Connect MBC facebook group allows patients to connect and disscuss matters relation to their ilness in privacy. Marie Keating are also running a 6 week course in the Aisling Hotel in Dublin, in this we are touching on topics like relationships, end of life and talking to friends and family. It really was an amazing morning and I was so glad to be part of this event. I really feel that this is just the start of raising awareness of the reality of living with mBC.
Oh my God, I have just realised that with all the highs comes the lows. I have been so busy working to promote awareness of mBC that I nearly forgot I was sick but then comes the reality. I can hardly move today with exhaustion. I really enjoyed my debut on tv with the TV3 interview on Tues and meeting my idol Ray D'Arcy for the radio interview. I really hope it came across possitive but although I looked great then today I am curled up on the couch hardly able to move. No getting dressed today I tell you. Every bone in my body aches, for the normal person a day's rest will revive them, foran mBC patient like myself it will possibly be at least a week. Explaining the fatigue to people is really hard but if you have been pregnant you know the tiredness that comes with that well multiply it by 50 and you get close. It's hard sleeping and waking up as tired as you were before you fell asleep. People keep saying take it easy,don't push so hard but it is important to me that people know about mBC and that if diagnosed with it they know that there's help there and they know where to go. I want to help take away the isolation of mBC for people if I can.
What an amazing day, It has offically happend, we are informing the public about what it is like to live with Metastatic BC or better known as stage 4 bresat cancer. Pfizer treated us as royalty today. It was nice to get all dressed up and be a star for the day. As I always say when living with this it is important to live each day to the full,that was easier today. I sincerely hope this video will help others and help them realise that there is help and support there and that Pfizer, Marie Keating Foundation and Europa Donna Ireland are really focusing on the gaps in support and awareness of mBC. I am proud to be part of this initiative too.
I feel like I have to update today as it has been 12mths since I decided to share my story with all of you and so much has happend for me, my family and my new community of patients with mBC and those organisations working to raise awareness and services for us.
So much has been happening over the past few months to connect patients with mBC and start to get the public talking about it also. As you all know I have been working with Europa Donna Ireland(EDI) for their facebook group Connect MBC network and it's terrific we are always looking for members so if you know anyone who sufferes from mBC point them in that direction.
I have also been working with Pfizer healthcare and we are delighted to be launching their add campaign next week. This will be a short 7min clip including my good self and a couple of other patients talking about life with mBC. (this will be launchednext Tuesday). This is just the start of the raising awareness and educating people about this disease. We are fast approaching October which is Breast Cancer awarness month but unfortunatlely for those of us we uncurable BC we are completely forgotten throughout this well no more. This year we are coming out fighting showing that it is not easy to live with the disease at times but that we are living. We are doing ordinary every day things like taking the kids to school, cooking the family dinner. We are not your sterotypical cancer patient with no hair, pucking into the toilet so ill we are not able to go out into the real world. We are all those things from time to time but mustly we are ourselves and we need support throughout it all not just the bad times.
mBC patients struggle with side effects all of the time, from fatigue to pain to bowel issues but that's all ok once we gain another day with our family and friends. I always say bring me flowers while I can still smell them, come visit me while I can see you, come help while I need it. It's too late doing all of this when I'm gone.
I look forward to sharing the Pfizer add with you all. I am so glad to have EDI's facebook group and from the end of Sept I will also have Marie Keatings 6 week Positive Living Program. Thanks to everyone involved for all their hard work and allowing me to be part of this new world for mBC patients and I look forward to being here for years to come still educating and raising awareness. 27mths metastatic and counting.
"You Look wonderful", "Fantastic to see you looking well and coming in" these are the greetings I had when I went into the office to work yesterday. It was fantastic to make it in and feel a little bit normal. I love working in accounts and in particular payroll. It's nice variation in this kind of a role.
The reality of my job or making it to work for a day is very different. I went in for about 5 hours yesterday. My hubby got the kids out in the morning and I slept until 10am, I got up then and tidied up a little and then went into work. After work it was normal in that I collected the kids, took them to training and cooked the tea. Then it was into bed around 10pm. It is at this point the strain of my days work took it's toll.
From sitting at my desk my lower back was in a lot of pain and this also caused a nerve to trap and my hubby spent about 20mins trying to massage it out. On waking this morning which was 10.15 I was so exhausted that I wasn't able to get out of bed. I had sever pain in my hands, legs and feet. All caused from exhaustion. I eventually managed to pull myself out of bed at 1pm.
Thankfully one of my best friends Karen called today and sorted the laundry and lots of other bits in the house which ment that I could take it easy.
The ability to hold down a full time job while having metastatic BC would in my opinion be extremely difficult, although some people do. There's no way I could possibly work full-time. I am lucky that my job can be done during part-time hours. The point that I'm trying to make I suppose it that looks can be deceptive. I may look great but what wasn't known yesterday when I went to work was that I slept for nearly 19 hours Sunday and that most of today went recovering also. It's hard but I still love to go to work and meet everyone and feel a little normal.
The fatigue of metastatic cancer and the pain from that fatigue is something I can write about and try and explain but it is something nobody can understand until you go through it. I just hope that you never have to experience this though.
To sum up medically the bug like symptoms that I have been experiencing were caused by my pain meds so, I have been put on a pain patch to stop putting them through my stomach which has helped dramatically. I have had a lumbar puncture to test the spinal fluid for cancer and that came back clear. Yipee. I am feeling slightly better thanks to physio, a new pillow and my twice daily back massage supplied by my hubby the numbness has improved. Now lets focus on the fatigue but no doubt with the help of my pallitative care team I have no doubt that I will find a balance that works. Fingers crossed.