A ray of hope

Evening all. Firstly we want to thank everyone for their outpouring of love and support, we are so grateful. We know last weeks news was a shock but a lot can happen in a week! I have secured a spot on a brilliant immunotherapy trial that has had some positive results for rare cancers. My specific cancer is so rare there are only 2-3 other sufferers globally, so it really is a trial. I still have a few more tests to complete and we are scheduled for an August 28th start with the first stage completed near Christmas. This development has given us a lot of hope and we feel very positive moving into this next stage. After consulting with the experts on how best to manage our current status, we will be maintaining a ‘business as usual’ approach to life and will reassess daily. A taskforce is being assembled to help us manage the assistance we will need for this next assault. Team leaders for food, transport, childcare, legacy and fundraising will be set up. It is not easy asking for help but this is unknown territory and an unknown timeframe. Thank you again for all your support. Clare & Glenn

A turn for the worse

Hi all, as many of you know we met with the specialists on Tuesday. We went in with positive thoughts and feelings, however we are sad to report from this point we are facing a vastly different prognosis. Whilst the treatment resolved the primary tumour, the cancer has now spread to my liver. A curative treatment is no longer available and I will hopefully begin an immunotherapy trial in the coming weeks to buy me some more time. The number 1 question is ‘how long do I have?’ We simply don’t know, as we don’t know what the cancer is going to do and how I will respond to the trial. We sincerely apologise that we cannot get to everyone personally to convey this message. We are in shock and just trying to process it ourselves. Understandably we are heartbroken but are focused on remaining positive and enjoying our days as a family. The children are being sheltered from the reality and continue to be our priority. Again we can’t not thank everyone enough for their love and support, and will keep you updated as we progress. Love, Clare

So long, Chemo!

Treatment has finished and I am exhausted. 17 days of chemo, 25 radiation, 4 Bracky therapy. I’m tired of being stoic and brave. I’m tired of strangers touching me. I’m tired of the pain and needles (I fucking hate needles). I’m tired of being a patient. I’m tired of sacrificing. I’m tired of not living my life, just getting through the hour/ day. I want to feel strong and healthy. I want my freedom to enjoy my days. I want to laugh. I want to be a present and giving mum, wife, daughter, sister and friend; they deserve that from me. I am forever indebted in the support and assistance we have received. My family and I could not have got through the past 6 months without each generous act of kindness. The people that matter most stepped forward without hesitation and said ‘I’m here for you and this is how I can help’. For that I will always be truly grateful. The specialists are still deciding when we will have the official post treatment scans and hopefully hear the sacred words of ‘cancer free’. We will keep you updated. I look forward to recovering and rebuilding, and catching up with everyone for some good times. Thank you, from the bottom of my heart. Clare x

Rest and recovery

We begin with important news: after an ‘unofficial’ MRI scan as part of bracky therapy, we have been advised the lymph nodes now appear cancer free and the main tumor has significantly reduced…. this shit is bloody working!! The fourth and final round of Bracky therapy was completed today. The first one was pretty tough but I managed the 4 general anaesthetics within 2 weeks well. I now have 3 1/2 weeks of no appointments or treatment, that will be spent resting and recovering to improve my overall health and blood work in readiness for the last 6 high dose chemo treatments that begin on May 30th for 3 consecutive days and then again 3 weeks later. The hair will fall out again, I will be a bit of a walking zombie with chemo brain and spend most of the 6 weeks in bed but then we are hopefully finished with this 6 months of intense treatment. The gather my crew app will be updated later in the month to assist with the last 6 weeks of treatment. Again, we can’t thank everyone enough for all their support and generosity. The food, care of children, transport, flowers, presents, texts, calls etc are very much appreciated and make a big difference to our day. Just a reminder with winter approaching, as my immune system is now non existent, it is of the upmost importance that myself and immediate family minimise our contact with infectious illnesses. Ways this can be done: flu vaccine, staying away or advising us when you are ill and good hand hygiene when you are in our home or around us. Much love, Clare & Glenn x

Half Way!

Evening all, quick monthly update. We are just over 1/2 way through Clare’s treatment and progressing well. Yesterday Clare completed day 25/25 of radiation and 11 rounds of chemo. This is a huge milestone and one we are glad to have behind us. Although Clare is now very tired and weak, the specialists are really pleased with how Clare’s body and being is tolerating such a brutal treatment regimen. Bracky therapy begins Monday and the following 3 Friday’s, with no chemo during this time (hallelujah!) A huge and heartfelt thank you to all those special family and friends that transported Clare to radiation and chemo, we are so grateful. Again, we can’t thank everyone enough for all their support and generosity. The food, care of children, transport, texts, calls etc are very much appreciated and make a big difference to our day. We did not choose cancer but are managing it and the treatment the best way we can. With roughly 12 weeks of treatment remaining, we still have a way to go and will need your continued love and support during this time. Much love, Glenn & Clare x

Treatment Update

Morning all, thought we’d give everyone a quick update now that I am further into treatment. Positive for the week is the MRI for my brain came back clear so we remain focused on treating the main neuroendocrine tumour on my cervix and the secondary tumours in 3 surrounding lymph nodes. With 2 rounds of high dose chemo completed, I started radiation on Wednesday which is week-daily for the next 5 weeks. I also have a lower dose chemo every Wednesday to keep the cells active for the radiation. Once this is completed, I have bracky therapy (internal radiation, day surgery, spinal block) twice a week for 2 weeks. Then I have two more rounds of the high dose chemo. If we don’t hit any delays with my health, this should mean treatment should finish in June. We then wait 4-6 weeks for everything to take affect, during this time we cross everything, pray and hope it has worked it’s magic, then have all the scans again. We can’t thank everyone enough for all their support and generosity. The food, care of children, transport, texts, calls etc truely do make the world of difference. Special thanks to Tracey Paterson for coordinating the ‘Gather my grew’ app, who is doing an outstanding job assisting us to manage everything. We still have a long road head and just want to thank you for your continued support again. Much love, Clare x