This page used to just be for the people who already knew my mum’s story, but now it is for everyone. My mum is Alvina, but everyone calls her Vina, she is 58 years old, and is the kindest person you could ever meet. My Mum is VERY SICK, she has a rare aggressive cancer, Salivary duct carcinoma which has spread to her lungs, and without help she will die, very soon. This isn’t a little sick, with years to raise the money to fix a minor inconvenience in her life. This isn’t a face lift, a boob job or minor ailment. This is CANCER. The big C. The word that makes peoples blood run cold. It is one of the worst diagnoses that anyone can receive. It will kill her, but there is hope in trials which are being run in the States. BUT TIME IS URGENT… Cancer doesn’t take a day off.
Usually, if it is caught early when the first symptoms start to show, the doctors are able to swoop in and fix it. Not all the time, but fairly often.
Sadly, this wasn’t the case with my Mum. Her symptoms were ignored and misdiagnosed on MULTIPLE OCCASIONS which delayed her treatment. It was well over a YEAR after the first major sign of something wrong presented itself, that was the Bell’s Palsy.
Mum had been to the doctor because her eye had been twitching for a few days, she was told it was stress. Two days later, Easter Sunday, 2016, she woke up with Bells palsy. We went to A&E; they gave her a brain scan to rule out a stroke, gave her five days of steroids and sent her on her way. It was only by joining online groups that she learned how to take care of her eye, and deal with the pain. Then after a couple of weeks she noticed a small swelling in her cheek, in front of her ear, so went straight to the GP who thought it could be a tumour. Mum was referred to an oral surgeon. A few weeks later she got to see the surgeon, he did a quick feel around her mouth and of the lump, and declared it was nothing, just tense muscle. He pulled up the A&E scan of her brain, and said there’s nothing wrong with your brain, you have bells palsy and Allodynia, stating it was unlucky to get both at the same time, on the same side of the face. He sent her away without doing a facial scan. A few weeks later she went back to the GP, as the lump on her face was still growing. The GP didn’t question the oral surgeon’s diagnosis of tight muscle, so still no facial scan, instead she was referred for Botox, to relax the muscles on the good side of her face.
It took a few months for the Botox appointment to come through, as it was considered cosmetic rather than medical. Finally, she sat in front of the facial surgeon…. Thank God!... He took one look at mum’s face, and said he didn’t care about Botox, it was the swelling on her face that needed urgent attention. Then everything started to move FAST… Full facial MRI scan, which showed the swelling was a tumour. Needle biopsy of tumour. Then the awful days waiting for the result. CANCER. We asked why it wasn’t realised sooner, the doctors said Mum was just unlucky to get hit with Bells palsy, Allodynia, and a cancerous tumour all at the same time. Mum said they must be connected, how is it possible to get 3 problems, in the same place on the face, at the same time, without there being a connection? But they insisted the 3 were all separate issues. Mum was given a PET scan with radioactive dye, it showed hot spots in the tumour and 2 lymph nodes.
She had surgery in February 2017, which removed her Parotid Gland, the facial nerves, and 40 lymph nodes. Mum was in surgery for 9 hours. While she was under the knife, samples were sent to the lab, there was cancer in at least 11 of the lymph nodes since they had left it so long it had spread but there was also cancer in the facial nerves.
We got conflicting comments from the doctors, ranging from “You will never find someone with the same problem, this is SO RARE” to “well, we know that none of these treatments that we would normally offer will work, as this is such an unusual cancer.” (SO HOW DO YOU KNOW IT WONT WORK???) The worst was being told it was going to invade her brain, and it probably already had…. Which really frightened Mum. They said she could “Try” radiotherapy, but it probably wouldn’t help, and, really, they wouldn’t advise it…the term “Quality of life” was used…
Mum had promised us she would fight, so she said she would do the treatment. She went through 6 weeks of intense radiotherapy on her head and neck, in MAY 2017, which worked, it seemed. Her scan didn’t flag up anything in her head or neck. (yay)… Doesn’t seem to have gone to the brain, like they suggested. But that isn’t all they scanned. But, hey, start with the good news, and only tack on the bad news at the end so you can see the hope die in their eyes, right? No? Well that’s what they did. 7 glowing spots spread across both lungs. We came back with questions… What about pills, lots of folks with cancer are on meds? I have friends with cancer taking pills for it! “Sorry, we haven’t got any pills or meds that will help, it’s a rare cancer.” So we ask, “Can you operate, how about Chemo?” “Sorry…no…nope…” Us: “What about trials?” Them: “we did look to see if there were any trials available for you, but unfortunately...” We say, “We hear how good the USA is for trials.” The oncologists make this statement… “Yes, the States would probably be your best chance.” IT’S A RARE CANCER… YOU’RE SCREWED… “Woops, sorry ‘bout that, well, we’re done here, good luck, get your affairs in order, out the door you go…”
Mum actually decided to say goodbye to her online friends.
We thought we now had to fight alone, not giving up, but with little chance of winning. Mum was starting to try and make things easy for us. But the friends we have made online, while going through this journey, stepped up, they wouldn’t let her withdraw. They gave love and support. They also gave advice, encouragement, links to follow, leads to follow… So now instead of organising her funeral service, Mum is contacting specialists and Cancer trials. The leads are from ordinary people on line, not the medical team who wrote her off… Through internet friends, Mum found out about a guy who seems to have the same rare cancer that she has, which had also spread to his lungs, and he is currently in a trial in the States, at Sloan Kettering. He is doing really well. This has given us a ray of hope, where there was none. We contacted a Doctor Propper in London, who has links with the company running the trials in the United States. (Loxo 101, look up Loxo oncology). We sent the final Lab report from Oxford to London, he then contacted the people in the States. Within a day they asked for Mum’s tissue sample to be tested for NRTK fusions. So the Lab where they test the samples in London has sorted all the paper work to get the Sample tissue from Oxford. Mum signed her part of the paperwork, everything was e-mailed to Oxford. Now London is awaiting the sample, They said it will take 2 – 3 weeks for the results…. When you are on borrowed time, that feels like forever. If she is positive for “nrtk” then she can get on the trial. So we are praying very hard for a great outcome. But now we need to raise the funds as quickly as possible. The URGENCY cannot be over estimated or over stated.
PS. We wouldn't be trying to use crowd funding if it wasn't our only option. We are a small family, both my Mum's parents have passed away (they did not have any insurance or estate). We are a hard working family, who would rather help others than ask for help. However due to unavoidable circumstances, we now have an extreamly limited income. Someone said we should use our own resources, rather than asking for help from others. They obviously have a comfortable lifestyle, and can't comprehend that some people are not in such a lucky situation. We own an old car (which is ready for the junk yard). We do have use of a mobility car, but it is not our property. There are no items of value, or estate that we could sell, and no collateral or income that the banks will take in order to take out a sizable loan, or mortgage. We live in rented accomodation. We had to move out of our tyde cottage, which came with my Dad's job, when he was made to stop work due to becoming severly sight impaired. (He has undergone 8 operations.) I finished Uni and have been job hunting without luck, my brother lives far away, and works for a low wage, but does his best to help. Mum took care of Dad and the family, plus, at the time, her Dad (Alzhimers) and her Mum (psychological damage). After they passed away Mum was studying for a degree in psychology to help others going through similar issues. But part way through her study she was given this low blow of terminal cancer. This information is to answer questions we have been asked by people online in response to the original page). Believe me, if we had any option other than the charity and generosity of others, this page would not be here.