Curly Car's Cancer Fund
I was diagnosed with breast cancer during pregnancy and this has now spread to my liver and lung. I need to raise money to allow me to access life-extending cancer drugs that are not routinely available on the NHS in Wales.
In September 2015, at the age of 42, we discovered I was pregnant with our second child. We were absolutely delighted with this news, as we had not expected this to happen and we very much wanted a sibling for our two-year-old son.
About six weeks later, I noticed some very subtle changes in my left breast and went to see my GP. She referred me to the breast clinic and I got an appointment for two weeks later. I was given an ultrasound and biopsy and two weeks after that, in my sixteenth week of pregnancy, I was told I had a 5.6cm cancerous tumour in my left breast. The doctor informed me that - as I was beyond the first trimester - I could have chemotherapy to shrink the tumour and it would not harm our baby. I would then need surgery after the baby was born.
I had my first of eight, fortnightly cycles of chemotherapy on the 8th of December and my hair started to fall out on Christmas Day (Merry Christmas!). Although, at times, it was tough, it wasn't as bad as I had imagined it would be. I had lots of side effects, some minor, some quite severe, but I had no nausea or sickness. I had regular scans to check the baby and these showed she was growing well.
I finished chemo in mid-March and our daughter was delivered by Caesarean Section on the 29th April. She was a very healthy 7lb 5oz and perfect in every way. We decided to call her Mira because she is our miracle.
As I was no longer pregnant, it was safe for me to have a CT scan. Before we received the results, I had a mastectomy. The pathology results were very encouraging - the surgery had got rid of all evidence of cancer in my breast and lymph nodes. We started to dare to believe that this was the happy ending we had hoped for... until we got the CT results.
My doctor explained that the scan had shown some suspicious areas on my liver and left lung and he would like to send me for an MRI to further investigate. On the 23rd June, my oncologist informed me that the MRI had confirmed that these areas were indeed cancerous and I now had secondary (i.e. incurable) cancer. And our world collapsed around us.
Secondary cancer is not curable but it is treatable. My cancer is HER2 positive, which means there are targeted therapy drugs that can stop it from growing and spreading. At the moment, I get three-weekly injections of a drug called Herceptin, and so far, this has stopped my cancer from progressing. At some point though, this will stop working - this could take years or it could take months. There are other targeted therapy drugs that have proven to be very effective in treating my type of cancer. These are TDM1 (or Kadcyla) and Pertuzumab (Perjeta), but these are not routinely available on the NHS in Wales. We can apply for these but it is highly likely our application will be rejected. We can appeal the decision but this takes time, which is a luxury I may not have. I have therefore decided to try and raise funds now, while I am well, and before we begin the process of applying for funding from the NHS.
The cost of the drugs is as follows:
Kadcyla: £5,120 per cycle (every 3 weeks)
Perjeta: £5,750 for the first dose, £2,875 per cycle (every 3 weeks)
I have no way of knowing how long I would need these drugs, so I have set my fundraising target at £150,000 as this equates to approximately one year on each drug.
In the unlikely event that we manage to secure NHS funding for these drugs, some of the money raised will be used to provide security for Rudy and Mira, and a large percentage of it will be donated to a charity called Mummy's Star ( www.mummysstar.org). This is the only charity in the UK and Ireland dedicated to women and their families affected by cancer during pregnancy. Mummy's Star has been extremely supportive since my diagnosis and we would love to repay them for this.
This has been a hugely challenging and traumatic time for us and those close to us. We have to motivate ourselves to raise funds at a time when we are still reeling from the implications of my diagnosis. Our family and friends have been extremely supportive and have thrown themselves into the fundraising. My siblings launched the fund in September and raised a substantial amount of money at an event where they cut off their hair!
We are fully aware that these drugs do not offer a cure, but they could provide me with extra years with my children, which could be the difference between them remembering their mother or not. If you could spare any amount of money - however small - or if you would like to get involved in fundraising, my family and I would be extremely grateful.
Thank you for taking the time to read our story.
Carolyn, Gos, Rudy and Mira
Facebook: Curly Car's Cancer Fund
Twitter : @curlycarsfund
Check out our video on YouTube:
The Curly Car Band - Beautiful Woman
Last week, we had a relaxing night at Lanelay Hall Hotel and Spa for my birthday, followed by a fun filled family weekend at Bluestone. I was waiting on my three-monthly CT scan results, so both were a very welcome distraction.
We got my results on Wednesday and it was bad news: the nodules/tumours/mets/bits of cancer (all the same thing!) in my lungs had progressed (grown) slightly, indicating that my current drug (Kadcyla) was no longer working as effectively as it had been previously. I’ve been on this drug for a year and my previous scans have all been stable (i.e. no change from the previous scan).
I went into a bit of a panic as this usually means a change of drug is necessary and I knew my next likely drug option would involve six months of chemotherapy.
I slept on it, then on Thursday morning I spoke to the other ladies on the Younger Breast Cancer Network forum. As always, they were incredibly supportive and gave me lots of excellent advice. They said, if my progression was minimal and I was feeling well, with no symptoms, I should consider continuing with Kadcyla.
I had my treatment scheduled for Thursday afternoon, so I arranged to meet with my wonderful secondary breast cancer nurse, Ann Baker, while I was at the Chemotherapy Day Unit in Singleton Hospital.
I had a long chat with Ann and she said she felt this would be a good option. She agreed to present my views at the Multidisciplinary Team Meeting (MDT) yesterday morning (I wanted to attend myself but patients aren’t allowed). She also agreed to request a transcript of the meeting for me and said she would call me as soon as the meeting was over.
Ann called at lunchtime to tell me the MDT agreed that continuing with Kadcyla would be a sensible option at this stage. I can’t tell you how relieved I am!
So, tonight I plan to celebrate this little victory by shaking what my mamma gave me (plus a couple of silicon things the NHS gave me...) at the Samcan Funk Soul Hip Hop Hoedown in aid of Secondary1st!
I attended a Breast Cancer Care event at Parliament which focused on support for secondary breast cancer patients. It was hosted by Nik Dakin MP (Chair of the All Party Parliamentary Group on Cancer). I attended the event with my Secondary Breast Cancer Clinical Nurse Specialist, Ann Baker (who is the ONLY secondary breast cancer CNS in Wales) and two ladies from our SBC support group.
We had a great day which started with Prosecco and posh snacks on the train, followed by lunch, then the BCC event and a tour of parliament courtesy of Gerald Jones MP for Merthyr Tydfil and Rhymney and Christine Rees MP for Neath. They were very interested to hear our stories and keen to help raise awareness of SBC and join us in the fight for better support and access to drugs/surgery.
A pretty good day all round!
Today is the two year anniversary of the launch of Curly Car’s Cancer Fund. During this time, you have been immeasurably generous with your support, time, energy and donations, and for that we will be eternally grateful.
At that point, two years ago, we were in a very precarious position; the drug I was on (Herceptin) was being provided by the NHS, but we knew that when it stopped working, the next two drugs I would need (Kadcyla and Perjeta) were not routinely available on the NHS in Wales, due to their extremely high cost.
Since then, the cost of these drugs has been renegotiated and I’m delighted to say that both are now routinely available on the NHS in Wales. I was extremely fortunate that this happened while Herceptin was still working for me, so when it stopped working in January this year, I was immediately able to access Kadcyla through NHS Wales.
My last three-monthly scan (July) showed my cancer is stable (i.e. there has been no change since my previous scan in April), so Kadcyla is working for me. This is great news but at some point - hopefully in the very distant future - this will change and I will need to move on to Perjeta.
As I said previously, Perjeta is now available for NHS patients in Wales, however, there is a caveat... it’s only available as a ‘first line’ treatment. This means NHS Wales will only fund this drug for patients who have not previously received any other cancer treatments. As I have already had Herceptin and Kadcyla, I will not qualify, so I will need to pay for it.
So, until now, we haven’t needed to spend any of the funds raised, which means there is around £195,000 sitting in the CCCF bank account; it will remain there until I need it for my treatment. Should I be fortunate enough to never need it, a large percentage of it will be shared between Mummy’s Star ( www.mummysstar.org) and our two children, and a smaller amount will be donated to the many other charities that have helped us since my diagnosis. Whatever happens, you can rest assured that every penny of the money donated will help cancer patients and their families.
So, in light of all of the above, we have decided to officially pause all fundraising from today. For a long time, the fund took up a huge amount of our time and energy, and we feel now is a good time to put it to one side, to enable us to focus on living our lives.
I am therefore requesting that all collection boxes are returned to us, all standing orders into the fund bank account are cancelled and all future fundraising activities are redirected towards other charities/people in need. If you search any fundraising/crowdfunding websites (eg. GoFundMe, JustGiving, etc) you will find many worthwhile, local causes that would really benefit from your support.
I will continue to post regular updates on my progress on Facebook, Twitter, Instagram and GoFundMe. Thanks to all of you we can now continue on our adventures, more than prepared for future rainy days. ❤️
My last scan showed that my current drug (Kadcyla) is working - my liver tumour has gone and my lung tumours have either shrunk or remained the same. This won’t be the case for ever, but for now, I can get on with living my life - in fact, three weeks today, I’m getting married!
So, once again, I’d like to take this opportunity to thank every single person that has played a part in keeping me alive and well, and giving me more precious time with my children and all my other loved ones.
❤️ THANK YOU ❤️
I don't know you or your family but I was so sorry to hear your news. I have contributed to your fund via a sponsored aerobics event but would like to try to possibly help in another way if I can. If you would like to contact me on 07828112205 maybe we can have a chat?
Hello dear brothers and sister how are you hope all is well everyone know that we are helping kids in here my country We help 34 orphans and many sick people We need some your help for continuse our this mission So plesae help us 30$ 40$ 50$ 100$ or 500$ Shear to to through western union and mine gram Or paypa Paypal.me/blaircarruthers
Hope all goes well with your next scan and your plans can go ahead for your holiday and wedding. Fabulous news!
So sorry to hear that you'd been back in hospital but glad that you're back home. My thoughts are with you and your family. Barbara x
Hi Carolyn, glad you're home, what a smile you have! Now seriously chill and sleep and spend time with those gorgeous little ones. Lots of love from me x
Hope everything goes as well as it possibly can, you are an amazing person xx
We don't have a God, but we wish you every success with the operation, and plead with any God there might be to look after you. Love by the busload.X.
Fabulous news Car, we need them to make them all available free on the n.h.s. in Wales now, or even better, a cure. Our thoughts are with you often even though we rarely see you. May you live for ever. Love and peace from Claire, Sam, Morgan, and the grumpy one(me).
we your mum and dad on our cruise holiday in corfu,they told us off your condition ,I hope you stay brave and focused xsay hi to mum and dad
Carolyn, Im trying to donate but its not working. I shall give my donation to Shents tonight if you're not there ~ much love xxx
love you beautiful girl xxxx
Do you have any links for us to donate?
Have you asked about the Metapher Clinical trial? This is chemo combined with Herceptin and Perjeta. I have been on this trial in Velindre Cardiff since March. I know they are still recruiting. I've met ladies from all over south, east and west wales on this trial xxx
Hi Carolyn @ Gos so sorry to hear your devastating news Wal is away until 3 October but I will start to put together a night of music for when he is back and if you need anything please get in touch sending you all lots of love Ren xx
Hi Carolyn,. So sorry to hear your news. Known you all your life and would luv to donate,. Can you please let me know how I can do this,.. Lots of luv to you and your beautiful family.. Annette Thomas. (Annette Payne)