Financial support for Mat and Claire

Our dear friend Mat is dying of cancer and was recently told his prognosis of 3 – 9 months. This is horrific, it is devastating and words cannot describe the grief that Mat and his wife Claire and all those who know him are experiencing at the moment. I am shaving my head in the hope that I can raise some money for financial support for Mat and Claire. Mat has not been able to work for most of this year and Claire has been doing overtime trying to make ends meet. This money will hopefully allow Mat and Claire to go away and have special time together and will relieve them of financial stress they are experiencing.

 

I’ve known Mat since we were kids. We went to primary school together, our families went camping together, and then we studied music together after high school. Our friendship has continued since then. Mat is a beautiful person, full of compassion and humour. He’s an incredibly talented musician and teacher. He’s adored by his family and friends.

 

People say I’m brave in shaving my head. This is nothing compared to what they’re going through. Please give a little as every bit will count and Mat and Claire deserve so much more than this.

 

My hair will be donated to Variety – hair with heart. They work with a wigmaker who make wigs only for kids and adults who have lost their hair due to a medical condition, including alopecia, cancer and other rare conditions. They are given money for the hair which supports programs and grants for Aussie kids who are living with sickness, disadvantage or a disability.

 

I will be shaving my hair off on the 16th of October - happy to share photos or videos if interested.

 

To learn more about Mat’s story please read below…

 

Matthew Baulch, aged 46 started to notice some issues with urinating.

 

‘If I knew what I know now I may have gone to see my GP a bit earlier. At night when I would go for a wee before bed it would sometimes take a while for things to get going. I then started noticing a rusty colour in the wee sometimes. One night after a concert at a school where I teach music, I had an episode of gross haematuria. There was no mistaking that it was blood in my wee and lots of it. I am a saxophone player and the deep diaphragmatic breathing had stirred things up. This was the first time that I realised something was really wrong. I made an appointment with my GP but I couldn’t get in for almost two weeks. About a week later I had two more episodes of bleeding in my wee and this was the first time I started to feel scared.’ He called his doctor’s clinic that day and explained the situation. They said he could come in the next day, given the seriousness of the issue.

 

‘I remember vividly my GP telling me that I had a tumour in my bladder. From there for the next few months it felt like a whirlwind. The world was entering a pandemic and my world was turning upside down. After CT scans, a couple of cystoscopies, a TURBT (surgery to remove the tumour), I was diagnosed with a stage 1 high grade cancer. The urologists told me that I would receive an immunotherapy treatment called BCG. This would help to avoid the tumour recurring. If this treatment failed I would need a cystectomy, to have my bladder removed. This totally freaked me out. I thought being at stage 1 meant that I was in a good place. I underwent the BCG treatment and had a good response to the therapy.’

 

Late in 2020 I developed pain in my glutes and lower back. I started 2021 on the couch to rest and let the pain resolve. The pain persisted and several days into January my wife suggested that I go to the emergency department, as she sensed that something wasn’t quite right. I went to the hospital and had a CT scan. The doctor explained that the scan had revealed a lesion in my fourth lumbar vertebra. I didn’t hear much of what he said after that. Sometimes when I am going in for surgery or I am anxious about something when I’m at the hospital, my legs start to quiver. That afternoon I shook like a leaf. I learnt a week later that the lesion had fractured my vertebra which was the source of the pain I was experiencing. 2021 has been a revolving door of hospital visits for CT scans, a PET scan, an MRI and a biopsy to determine what the lesion was. A year to the day that I was informed I had a tumour in my bladder, I was told that my bladder cancer had spread to my vertebra. I had gone from a stage one diagnosis to an advanced cancer.

 

Just when I thought things couldn’t get worse I got a call from an orthopaedic doctor at the hospital. They had seen the MRI and decided that spinal fusion surgery was necessary, to prevent the tumour from causing further damage. I went into surgery the next day to have screws and rods inserted in my vertebrae. Essentially this creates scaffolding to take the pressure off the damaged vertebra and to help relieve the pain that I had endured for about three months.

 

I then embarked on two months of chemotherapy. Regrettably the cancer has continued to progress. I now have about 20-30 lesions throughout my vertebrae, pelvis and some ribs. I have now started a new immunotherapy treatment called pembrolizumab, that has shown some success for bladder cancer metastases. There is perhaps a 10% chance that I will have a complete response and a chance that I will have a partial response. Unfortunately, bladder cancer is a difficult disease to control when it spreads to other areas in the body.

 

This will no doubt be the most challenging period of my life. I am scared. I know that there is no ‘cure’ but I know that the medical team will do everything they can to keep the disease contained. I am full of hope and optimism and I will do everything I can to beat this.

 

September 19th - This is the most recent message from Mat updating friends and family… I have begun some radiation therapy this week to help deal with my pain issues. My rib feels 100% which is great. Hopefully in a couple of weeks the pain in my lumbar vertebra will start to resolve. As far as the next steps for treatment we are awaiting the results of a couple of tests to be done on my biopsy sample to see if I may be eligible for a couple of clinical trials. There are 3 options. 2 of them are dependent on the outcome of the tests. The 3rd is a trial that opens up in October but if things are progressing with my cancer then it may be likely that we just go ahead and start another round of chemo. The chemotherapy may slow things down and give me more time but it is not always successful. Claire and I are remaining as hopeful as we can be. There is a chance albeit a very slim one that we get on one of these trials and get some good results. At this stage a 'cure' is a very long shot. The aim is to slow the cancers progress and get more time. As well as my bones the cancer has now spread to my liver and a lymph node. Now for the uncomfortable. Last week was the first time I was given a prognosis. It gives me no joy in sharing this news with you and I am sure it will not be pleasant for you to hear this but this is the reality of advanced metastatic cancer. People in my circumstances have about 3-9 months life expectancy. I am going to fight this m**** f*** as hard as I can but it is not going to be easy. My preference would be for 3-9 years. Apart from my pain issues physically I feel pretty good at the moment and I know in myself that it's not 3 months. So now is the time to start thinking about, and preparing for this sad possibility. Now is the time to spend some quality time together while I have the energy. I don't want your enduring memories of me to be of someone fading and wasting away in bed. Fortunately lockdown appears to be coming to an end soon but in the meantime if you want to come and visit me feel free. I will get a letter from my GP giving me permission to have a couple of visitors in my garden. We feel immense sadness at the moment but Claire and I will do everything we can to enjoy our time together and with you. Bladder cancer doesn't normally follow the path that it has given me. I have been extremely unlucky the way things have evolved. Thank you for your ongoing love and support. We both love you all very much…