Never in a million years did I think I would be here, begging friends, family, strangers on the internet, for money. Yet, here I am…

You only get one mum, and I’m not willing to lose mine anytime soon.

So, here I am, on my knees, asking for anything you can give to help our wonderful, brave, strong Mum live long enough to grow old, see her children get married and watch her grandchildren grow up.

“You can’t put a price on life” is a phrase we all often hear, but apparently in Mum’s case you can, and specifically that price is £350,000.

Here is Mum’s back story for anyone who doesn’t know the hell she has been through so far. Apologies in advance, it is a really long read, but I would really appreciate you taking the time to read.

Mum was diagnosed with the very rare cancer of the vulva in August 2022 and at that time she was told it could easily be managed by a quick operation to remove it and it would all be done and dusted within 6 weeks. How wrong could they have been. Mum eventually went in for an operation in November 2022 but unfortunately the surgeons could not complete it due to the cancer being far bigger and it had spread much further than first anticipated. So the next step was 7 weeks of daily radiotherapy and weekly chemotherapy at the Cancer Centre in Liverpool. This happened during Jan-March 2023 and was possibly one of the worst times in all of our lives. Mum was so, so poorly from the chemotherapy. She couldn’t function, was on an antisickness driver and had district nurses visiting daily to help her get out of bed. However, fast forward to March and she somehow made it through and rang the bell marking the end of her treatment, we were all so happy it was over and even more jubilant when she had her scan in May which showed the treatment had worked - she was cancer free!

This happiness was sadly, very very short lived as barely a week after the results, Mum found another lesion and it was confirmed that the cancer was in fact back. The next step was a huge 9 hour operation requiring a full vulvaectomy and something Mum found particularly hard, having a permanent stoma bag fitted. This happened in September 2023 and despite how horrendous the operation was, Mum did amazing, battled against the odds and recovered so well. The rollercoaster of emotions continued as she was told the cancer had been completely removed and she was once again cancer free!

For a period of time Mum’s life went back to ‘normal’! We almost forgot about the cancer, Mum adjusted to life with a stoma so well, which was no surprise really as she takes everything thrown at her without a moan or a grumble and always with a smile on her face. Mum witnessed the birth of another granddaughter, watched her daughter Erin get married, enjoyed our annual trip to Center Parcs and a lovely family Christmas, things she wasn’t sure if she would ever see! But in February 2024 began to get back pain and after an urgent trip to the Dr’s and more scans, it was confirmed that sadly the cancer was back and this time it was bigger, more aggressive and had spread to her lymph nodes. Mum was given an immediate treatment plan of more chemotherapy (a different type from last time), this would be 3 weekly and she would be admitted to hospital each time due to how poorly she was last time she had chemotherapy.

However, with Mum’s cancer being so rare, there is actually very little research, data or evidence of any treatment plan working for vulvar cancer at all. The Dr’s decided upon a treatment plan based on what had been successful for cervical and womb cancer but had no idea if it would work or not for vulvar cancer and Mum went into this with less than a 20% chance of successfully shrinking the tumour, and she was given the extremely difficult news that this cancer was now terminal and no treatment would ever fully get rid of it.

However yet again, Mum went into this strong, positive and ready to fight. And although she tolerated this treatment better than last time, she very sadly lost all of her hair very quickly which she understandably found very tough. She also developed blood clots in her legs and lungs for which she is on blood thinning injections, for the foreseeable future. These clots and the tumour cause Mum to be in agonising pain daily, to the point where even with the cocktail of medications she is on every day, she still struggles to walk or do anything physical and is often resided to a wheelchair, which for anyone who knows Mum, will know that that is one of the hardest things she has had to cope with. She is so independent, loves to be busy and not being able to carry on as normal has been so difficult for her, ultimately causing very low mood and depression.

This latest round of treatment finished in May 2024 and after another agonising wait, Mum was given the devastating news last week that the chemotherapy has not worked and in fact the cancer has once again grown and has spread further, and has become even more aggressive and fast growing. Her tumour is also causing excessive bleeding which is from gaping wounds inside her. Despite this absolutely horrendous news Mum will not give up and will go again with a different type of chemotherapy starting in July, after another bout of radiotherapy to attempt to stem the bleeding and make her more comfortable. However, each time this cancer returns it is harder to get rid of, the chance of success rate is lower and our list of options is getting smaller and smaller.

With this in mind we have researched other possible options to extend Mum’s life. She is only 56, she is so young, has so much more life to live and so much more to see. She deserves to get to grow old. We have researched herbal treatments and alternative medical options, and have found that another form of treatment she could have is immunotherapy. Immunotherapy is available as standard on the NHS for almost all gynaecological cancers but NOT vulvar cancer. There is apparently not enough cases of this cancer to warrant any NHS funding for this treatment despite it being extremely effective for the other gynaecological cancers (and non-gynaecological). The only option for this is to go private. On recommendation from Mum’s Dr we paid £4000 for her to be tested to see if immunotherapy would be effective on her tumour tissue and we were ecstatic this week to find that the result was positive and we were told it would absolutely work in shrinking her tumour, and reducing the cancer, and in fact she would see immediate results after the first couple of doses. It is of the Dr’s opinion that Mum should go ahead with this treatment, along side her chemotherapy, to extend her life.

But this is where the cost of life comes in! This is free for any other gynaecological cancer, but not for Mum. How can anyone choose to save some people, but not others? Mum didn’t choose to have this cancer, it has absolutely flipped her life upside down and for her to not have access to this life saving treatment, that others do, makes us so angry. It is so unbelievably unfair and cruel.

The cost of each dose of immunotherapy is an unbelievable £10,225 and the treatment plan is one dose 3 weekly initially, then a double dose every 6 weeks, for 2 years. From this we estimate Mum will require 34 doses over the 2 years equating to the astonishing total of £350,000.

We DO NOT have that money, it is such a huge sum of money that I do not know if we ever will have it, but we have to try. We need to save it, raise it, borrow it, lend it, do whatever we can to get that amount so our amazing Mum can live! Each dose is paid for individually and so we do not expect to raise this amount straight away, we will do this over the two year period. We will run 5ks, marathons (Caitlin!), do bake sales, car boot sales, raffles, run events, sell anything we have to get this money, but we cannot do it by ourselves.

We need your help. Please, please, please, give anything you can to help our amazing Mum, sister, auntie, friend, live as long as she deserves to. She is not ready to die. We are not ready to lose her.

We know times are hard for everyone and are so sorry to ask. We are not asking for lots of money, we are just hoping for a small amount from lots of people if we can spread the word. We are so, so grateful for anything you can give.

Thank you so much for reading and thank you in advance for anything you can give to help raise money for this treatment.

Sian x