Retrospective: the following is a diary entry from yesterday – one year ago. I am grateful we honoured our brother in-law Andy’s birthday in a much nicer way this year. One year on from his amputation Brendan is still living with cancer and we are grateful for the progress he continues to make.
Diary Entry: 24 March 2015 – a curative solution
“With his usual calm and compassionate manner Bren’s oncologist told us the news. He then told us the most possible course of action. Although we both suspected what that would be; when the doctor, as gently as he possibly could, suggested a likely option would be limb removal, the wind and everything else drained from both my husband and I. It was shocking, surreal and most likely.”
Cancer sucks; it’s frightening, can be all consuming and is something most people fear. Just about everyone knows someone who has been touched by cancer. Young people, old people and anyone in between can get cancer. People can be fit and strong and still get cancer. People die from cancer. People survive cancer. You can get cancer. I can get cancer.
This information is not new to me and I am sure not to you either. When my husband got cancer however, I became well acquainted with it. The enormity of what not only the person with cancer, but those around them go through quickly became very clear to me. I soon realised how little I really knew. Even as I stood beside my husband; seeing first hand, upfront and personal the impact it was having on all of us… I still didn’t understand just what he was going through. How could I? All I know is that he has taken on the challenges ahead of him with strength, good humour and a grace that amazes me, every day. I am trying to do the same.
(the above excerpt has been taken from chapter 6 of The Story of Us/working title …a book in progress; that is coming together from The story of Us blog post diary entries between June 2014 and Now – it will be a book for Tyra and Baden & other interested parties!)
Amputation – One Year on
Brendan’s leg was amputated on the 30th of March 2015. Without the operation we would lose him to cancer, yet making the decision to call his surgeon and request that they go ahead and cut his leg off was the most difficult decision and phone call I had ever watched anyone make. It was elective surgery.
Obviously that was a pretty dark time, which is probably reflected in the piece of writing above, written around the same time. Brendan continued with chemotherapy as an inpatient after his operation, which was extremely difficult on him. The last three cycles he endured, from the middle and moving toward the end of 2015 where 24 hour infusions, given over six days – with two weeks recovery between each cycle. It was pretty horrendous and when the results came through afterward, the progression of disease hadn’t been stopped. This was devastating.
It was at this point that his oncologist discussed the option of attempting to manage the disease with chemotherapy tablets at home. This meant we and he in particular, would not have to spend long periods of time away from the kids. It was a no brainer – he said yes almost immediately and thankfully the treatment at home has done exactly what we had hoped. To this point; all but one of the six remaining tumours are playing nice, that not so nice tumour was seen to with radiation in December and we are looking forward to seeing good results from the next PET scan – it will take place on Brendan’s sister’s birthday in May.
There have been lot’s of dark days between Brens amputation and now, but not one of them hasn’t been touched by at least a little glimmer of light and most of them have been full of love and hope, while others have seen us settling into our new normal. Nothing is the same or as easy as it use to be but that’s ok, we have time and that’s all that matters.
A Bit More Info:
There are many different forms of sarcoma, the type Brendan has is an Undifferentiated Pleomorphic Sarcoma. His treatment is undertaken by a multidisciplinary team and from what I understand it is tailored specifically to his needs. Not only does the treatment effect each patient differently, but the limited understanding I have of Brendan’s disease …each of his tumours can react differently to the same treatment. That’s why it’s been such a wild ride I guess!
Sarcomas account for less than 3% of all cancers. Almost 90% of sarcomas occur in adults but affect a younger population than most cancers. Sarcomas comprise 20% of cancers in children and up to 10% in young adults. The effect of sarcoma on the community and in Brendan’s case, in terms of disability-adjusted life years is huge. As with all cancer, research impacts directly upon survival rates.
Multidisciplinary Team (MDT) is a team made up of different healthcare professions with specialised skills and expertise, who all work together to make treatment recommendations that support quality patient care. Multidisciplinary teams aim to address treatment that is focused on both the physical and psychological needs of the person diagnosed with cancer.
Brendan’s Team from what I have seen includes; but I know is not limited to his Medical Oncologist, Orthopedic Surgeon, Thoracic Surgeon and Radiation Oncologist. There are also Clinical Nurse Consultants, a Nursing Practitioner and Chemotherapy Nurses along with Allied health Professionals . They are an amazing group of people that are working hard on our behalf to keep Brendan well. I am in awe of all that they do.
Lifes Good and Hope is limitless!
To those celebrating this weekend – Happy Easter, here’s cheers to chocolate for all!
And to those not celebrating; here’s cheers – I hope you enjoy some chocolate too xx
PS: Have you joined our facebook group: https://www.facebook.com/groups/storyofus4/? If you are on facebook it is a great way to connect and share
Obviously I am not a medical professional, I write from my own observations of the situation my family is going through from my perspective …a wife and carer along for the ride. For more detailed information on sarcomas & MDT go to the links below.
Always seek professional medical advice if you have any health concerns … your health his important.