Please help me fund my cancer treatment
Donation protected
I’m Linda. I am 52 years old. Richard and I have been together since we were teenagers and we have 2 fantastic children, a girl aged 17 and a boy 14.
Up until August 2018 I thought I was 100% healthy. I ate well, I exercised and generally looked after myself. Then I suddenly experienced a sharp pain in my side. I thought I had pulled a muscle. I went to the doctor who sent me for a chest x-ray. I got called into the surgery the next morning and was told that they had found a secondary cancer (i.e. one which had spread from somewhere else) in my lungs. I couldn’t believe it: I was fit and healthy, I had 2 kids who needed me. This could not happen. My first thought was “I cannot leave my children” and that thought remains with me every day.
Life changed overnight for us all. After many scans and tests, the first tumour was found in my bowel. I was told it was treatable but that no stage 4 cancer is curable as it always comes back. Lungs and bowel both inoperable. I was dumbfounded a cancer could be so advanced but cause no symptoms. Telling the children was by far the worst part. They are old enough to understand how serious this is and it breaks my heart not being able to take such a huge worry away from them. They are no longer babies but teenagers still need their mum and I can make no promises to reassure them. I felt that I had thrown a grenade into the middle of their childhood. I always took it for granted that I would be around to see them become adults. Doesn’t everyone? Now nothing is certain. My daughter is doing her A levels. My son is picking his GCSE’s. They are planning their futures but my illness makes thinking about the future very difficult for them. I am thankful for the support of Richard but he is at a loss as well. He lost his sister to breast cancer about 10 years ago and I am totally gutted he is having to go through this again. It is so, so unfair.
I have been in continuous treatment for the last 6 months. Life is taken over by hospital appointments, radio and chemotherapy and managing the side effects of the drugs. It is exhausting. Chemotherapy has often been delayed because my immune system is so poor. This means I cannot plan anything in advance as I never know which week I will not be in chemo and I have been unable to return my job in mental health services providing therapy to people with trauma. It is a job which I love but I cannot provide good care for others when I have such an unpredictable schedule and am struggling to cope with what is happening in my own life. Plus, I often have to restrict my contact with people due to the risk of infection.
6 months on and I know a lot more about the type of bowel cancer I have. It is quite unusual (less than 10% of patients have it) and the treatment available on the NHS is known not to work well for most people with it. This has been the case for me as the latest scan has shown that 6 months of gruelling treatment has had no effect.
I am doing as much as I can to try and help myself. No matter how bad I am feeling I get up and see the children out to school every day and organise the house and meals. I am eating healthily all the time, exercising when I can. I have also done lots of reading and research so desperate am I to find a way out of this and I have learnt my situation does not have to be hopeless. Progress is being made all the time in the development of cancer drugs and there are two promising options. However, neither of these can be funded by the NHS.
The first option is a set of 3 drugs which have shown brilliant results with my type of cancer. There was a clinical trial running which I was hoping to get onto when my first treatment stopped working but the trial closed a few weeks ago. I was devastated because I had pinned my hopes on it knowing my other options are limited. I’ve been told these drugs will not be available on the NHS for years. These drugs do not need to be taken long term. Even if I take them for a few months it could make a huge difference. But they would cost around £10,000 a month. Another option I have is to add a different drug called Avastin to what the NHS is offering me next. It helps kill cancer cells and is used as standard care everywhere else in the world. Unfortunately, the NHS dropped it in 2012 due to costs but recent research has shown Avastin makes existing treatment a lot more effective. It costs about £3000 a month.
Many people are living long term now with stage 4 cancer. It is no longer a death sentence. I am in touch with many people on cancer forums with my type of cancer who are thriving many years after diagnosis. Many were told they were incurable but they are currently disease free. It doesn’t mean cancer won’t come back but they are living good quality lives for years. But they all have had access to these drugs I mentioned which are not provided by the NHS. So, I will have to find the money for these drugs myself. Already I am on half pay and the ongoing treatment means I have no choice but to take early retirement on medical grounds. We are still paying off our mortgage and I before I became sick, I was planning to increase my hours to help cover the costs of the children going to university. I can’t believe I am having to retire at 52 years old. Retirement will allow me to use some of my pension to fund treatments but it will not go far. It is not a big pension and we still need money to live on. The situation I am in is like living a nightmare, wakening up every day to this diagnosis and knowing there are drugs out there that would help but unable to get them because of money. It is hard enough trying to support the family and keep things as normal as possible at home while dealing with side effects of chemotherapy without battling for treatment to save or prolong my life. No-one should have to do this. It is heart-breaking, exhausting and overwhelming. But I refuse to give up. I have contacted the drug companies asking for support with funding/ compassionate use. The response so far has been “no”.
So, I have started this crowdfunding to help raise £45,000. I know it’s a huge amount of money but I’m hoping it will add up over time to give me more options to keep me here as long as possible. £20,000 would pay for the triplet of drugs for 2 months which would allow us to see if they work for me and could do a lot to knock this cancer back. £18 000 would pay for the Avastin for 6 months. £7000 would pay for Avastin at a lower dose to help keep cancer stable beyond chemotherapy. At the minute it is difficult to plan the way forward without knowing what funds I will have available.
Those of you who know me will know how hard it was for me to put this page together. I cannot believe I am really in this situation. I never ask anyone for help with anything. I have tortured myself about what to say, what people will think, asking myself why would anyone give me money. But this isn’t about me. It’s about my family and 2 children who still need their mum. And I am determined to be here for them: to help them through the rest of their school years, their move into adulthood, help them adjust to moving away from home and continue to provide a base to come back to when they need it. I don’t want Richard to have to do this alone. I have a picture in my head of the 4 of us standing on top of Slieve Donard the summer after my son turns 18. We are all looking healthy. I will be 56 years old. That’s what I’m aiming for.
Thank you for reading this. Sorry for the long story. Please help in any way you can. I will post updates on how any money raised is spent and how I am doing.
Up until August 2018 I thought I was 100% healthy. I ate well, I exercised and generally looked after myself. Then I suddenly experienced a sharp pain in my side. I thought I had pulled a muscle. I went to the doctor who sent me for a chest x-ray. I got called into the surgery the next morning and was told that they had found a secondary cancer (i.e. one which had spread from somewhere else) in my lungs. I couldn’t believe it: I was fit and healthy, I had 2 kids who needed me. This could not happen. My first thought was “I cannot leave my children” and that thought remains with me every day.
Life changed overnight for us all. After many scans and tests, the first tumour was found in my bowel. I was told it was treatable but that no stage 4 cancer is curable as it always comes back. Lungs and bowel both inoperable. I was dumbfounded a cancer could be so advanced but cause no symptoms. Telling the children was by far the worst part. They are old enough to understand how serious this is and it breaks my heart not being able to take such a huge worry away from them. They are no longer babies but teenagers still need their mum and I can make no promises to reassure them. I felt that I had thrown a grenade into the middle of their childhood. I always took it for granted that I would be around to see them become adults. Doesn’t everyone? Now nothing is certain. My daughter is doing her A levels. My son is picking his GCSE’s. They are planning their futures but my illness makes thinking about the future very difficult for them. I am thankful for the support of Richard but he is at a loss as well. He lost his sister to breast cancer about 10 years ago and I am totally gutted he is having to go through this again. It is so, so unfair.
I have been in continuous treatment for the last 6 months. Life is taken over by hospital appointments, radio and chemotherapy and managing the side effects of the drugs. It is exhausting. Chemotherapy has often been delayed because my immune system is so poor. This means I cannot plan anything in advance as I never know which week I will not be in chemo and I have been unable to return my job in mental health services providing therapy to people with trauma. It is a job which I love but I cannot provide good care for others when I have such an unpredictable schedule and am struggling to cope with what is happening in my own life. Plus, I often have to restrict my contact with people due to the risk of infection.
6 months on and I know a lot more about the type of bowel cancer I have. It is quite unusual (less than 10% of patients have it) and the treatment available on the NHS is known not to work well for most people with it. This has been the case for me as the latest scan has shown that 6 months of gruelling treatment has had no effect.
I am doing as much as I can to try and help myself. No matter how bad I am feeling I get up and see the children out to school every day and organise the house and meals. I am eating healthily all the time, exercising when I can. I have also done lots of reading and research so desperate am I to find a way out of this and I have learnt my situation does not have to be hopeless. Progress is being made all the time in the development of cancer drugs and there are two promising options. However, neither of these can be funded by the NHS.
The first option is a set of 3 drugs which have shown brilliant results with my type of cancer. There was a clinical trial running which I was hoping to get onto when my first treatment stopped working but the trial closed a few weeks ago. I was devastated because I had pinned my hopes on it knowing my other options are limited. I’ve been told these drugs will not be available on the NHS for years. These drugs do not need to be taken long term. Even if I take them for a few months it could make a huge difference. But they would cost around £10,000 a month. Another option I have is to add a different drug called Avastin to what the NHS is offering me next. It helps kill cancer cells and is used as standard care everywhere else in the world. Unfortunately, the NHS dropped it in 2012 due to costs but recent research has shown Avastin makes existing treatment a lot more effective. It costs about £3000 a month.
Many people are living long term now with stage 4 cancer. It is no longer a death sentence. I am in touch with many people on cancer forums with my type of cancer who are thriving many years after diagnosis. Many were told they were incurable but they are currently disease free. It doesn’t mean cancer won’t come back but they are living good quality lives for years. But they all have had access to these drugs I mentioned which are not provided by the NHS. So, I will have to find the money for these drugs myself. Already I am on half pay and the ongoing treatment means I have no choice but to take early retirement on medical grounds. We are still paying off our mortgage and I before I became sick, I was planning to increase my hours to help cover the costs of the children going to university. I can’t believe I am having to retire at 52 years old. Retirement will allow me to use some of my pension to fund treatments but it will not go far. It is not a big pension and we still need money to live on. The situation I am in is like living a nightmare, wakening up every day to this diagnosis and knowing there are drugs out there that would help but unable to get them because of money. It is hard enough trying to support the family and keep things as normal as possible at home while dealing with side effects of chemotherapy without battling for treatment to save or prolong my life. No-one should have to do this. It is heart-breaking, exhausting and overwhelming. But I refuse to give up. I have contacted the drug companies asking for support with funding/ compassionate use. The response so far has been “no”.
So, I have started this crowdfunding to help raise £45,000. I know it’s a huge amount of money but I’m hoping it will add up over time to give me more options to keep me here as long as possible. £20,000 would pay for the triplet of drugs for 2 months which would allow us to see if they work for me and could do a lot to knock this cancer back. £18 000 would pay for the Avastin for 6 months. £7000 would pay for Avastin at a lower dose to help keep cancer stable beyond chemotherapy. At the minute it is difficult to plan the way forward without knowing what funds I will have available.
Those of you who know me will know how hard it was for me to put this page together. I cannot believe I am really in this situation. I never ask anyone for help with anything. I have tortured myself about what to say, what people will think, asking myself why would anyone give me money. But this isn’t about me. It’s about my family and 2 children who still need their mum. And I am determined to be here for them: to help them through the rest of their school years, their move into adulthood, help them adjust to moving away from home and continue to provide a base to come back to when they need it. I don’t want Richard to have to do this alone. I have a picture in my head of the 4 of us standing on top of Slieve Donard the summer after my son turns 18. We are all looking healthy. I will be 56 years old. That’s what I’m aiming for.
Thank you for reading this. Sorry for the long story. Please help in any way you can. I will post updates on how any money raised is spent and how I am doing.
Organizer
Linda Russell
Organizer
