Grapefruit and Wine

It's the strangest feeling being told that you have weeks to live. I feel so normal and well. Although my body does seem to be dropping hints, it makes me sit down more, and the wheelbarrow full of pain relief medication reminds me that it is propping me up for now.

I was told that the tumours have their own blood supply now and are fighting me for energy and strength, I don't want them to win. The chemo options are exhausted if I want any quality of life for this time I have left, so to find out there is a drug choice available to me but will not be available through the NHS as NICE consider the potential six plus months it could give me, not financially viable, was a shock.

So after discussing it with my family, and weighing up the pro's and cons of drugs vs quality of life, it seems that Avastin has far fewer side effects and less chance of the treatment killing me in comparison to chemo we thought we would give it a go.

Then we found out the cost. The drug costs £2229 per treatment. However I've been offered it per vial at a lower cost through my oncologist, with infusion paid for by the NHS. To fund the first treatment I need to raise about £2500
I found it really hard to start this donation request, I've never asked anyone to fund anything for me ever, but so many lovely people have said they'd help, and kind of twisted my arm to see if I could raise funds from the kindness of peoples hearts.

So here I am, giving it a go, if I can raise funds I may see the year out or beyond, if the treatment works for me. If I can't, then it's looking like a summer funeral. My birthday is the end of April, they've told me I will (hopefully) see it. Now April is getting closer, I feel the concern around me growing.

I'm scared of telling my grandchildren, especially Maddie who is eight, we are very close, her little sister Lucy is just 3 so she won't understand why Nanny was here one day and gone the next.

I don't quite understand it myself.

I've written a brief history below, even if you don't feel able to help or share my page, I hope it has raised your awareness of ovarian Cancer, and the fact it kills 11 women everyday. Spread the word and it may save a life.


In 2012 I was diagnosed with stage 1C ovarian cancer. Following treatment to include two major surgeries I was in remission for three years, my kidney and thyroid function were compromised from the treatment and remain so.

In 2015 I recurred with a fast growing tumour, I had a seven hour operation to remove it from my pelvis, and had a colostomy bag due to the invasion into the bowel wall. Followed by chemotherapy.

In 2017 I was again in recurrence, this time with extensive liver involvement. I had a full course of chemotherapy, but despite the CT scans showing no progression, the cancer was actually moving along my pelvis and into my bladder and cervical area. This caused considerable pain and bleeding but was difficult to identify until an ultrasound showed invasion. I have a hard round tumour in my stomach rectal muscle which can be felt and seen by my belly button.

When I was first diagnosed I was considered curative but ovarian cancer has it's own plan and now am on end of life care.

While on chemo therapy in 2017 I was advised to book an end of chemo treat. I booked tickets to see Sarah Millican in November, which I assumed was for 2017, when they arrived it was 2018. This is my goal, to get to that concert, the odds are against me until now. There is a potential I may make that date if I can get some relief and tumour stability from Avastin. We all need goals, this is mine.

One of the treatments for ovarian cancer is a drug called Avastin, when I was first diagnosed it was only available for NHS funding as an option for 3rd line therapy. When I was on 2nd line therapy NICE changed the guidelines to make it only available for front line therapy, meaning I was not eligible again. 

In January 2018  I was told that my treatment options were exhausted as I am not responding to platinum chemotherapy, and my health is generally deteriorating. I have sought a second opinion and a third. I don't want to chase treatment for the sake of it, but if I get to go to my concert and spend some extra months with my young family then this looks to be my only life line.

I have been given the opportunity to take this drug but only privately funded. Having asked other ovarian cancer sufferers who are fighting this awful disease who have had or are having this drug, the majority have found it to have extended their lives in terms of quality and quantity.

I've been given weeks as a time line, so have been cemetery plot shopping and funeral director shopping, but I don't want to give up yet, if this can help me as it has so many others.

I am taking a cocktail of controlled drugs, am an out patient at my hospice, without whom I would be in such bad shape now, as nobody would listen to me about how much pain I was in because of the poorly reported scans. It's been a real shock, one minute all looks good the next it is the worse it can be.

My youngest is 19 years old, young to lose her Mum, my eldest is 33 and he has given me two wonderful granddaughters aged 3 and 8. I know I won't see another Christmas with them if I don't have this opportunity to try Avastin. There are no other options on the table. The last chance for me.

The drug is expensive, I've started at an amount that has been suggested as a realistic goal to cover costs. If it doesn't work and I have to abandon treatment, any left over funds will be donated to ovarian cancer charities to help others in my position.

I am due to see the consultant on 23rd March 2018 to discuss the way forward, and as soon as funding is in place will be able to start my first treatment.

I am uncomfortable asking for funding, but I don't know what else to do to raise funds. So anything would help so much. The funds will be used to buy the drug, the administration of the drug and all the associated costs that private medicine demands.

My journey can be read below

http://grapefruitandwine.blogspot.co.uk 

My Vlog is new

https://www.youtube.com/channel/UCZhZ4cSPQGEzLkb0jYyJMxA?view_as=subscriber

Thank you for reading

Donations

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  • Melissa Bensink 
    • £12 
    • 31 mos
  • Anonymous 
    • £10 
    • 33 mos
  • Anonymous 
    • £30 
    • 34 mos
  • Lisa Roberts 
    • £15 
    • 34 mos
  • Jane Walshe 
    • £20 
    • 34 mos
See all

Organizer

Lily-Anne Green 
Organizer
Wymington, ENG
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