Lyndsey's journey
Hi everyone and thanks for taking the time to read our story.
My name is Gareth and on the 19th may 2020, our lives were completely turned upside down.
After numerous hospital and walk in visits, plus telephone consultations with the GP , my partner Lyndsey ,38 and mother to our 2 beautiful daughters Jasmine 12 & Imogen 10 , was given the devastating diagnosis that she had stage 4 metastatic renal cell carcinoma, starting with an 8 cm tumour in her right kidney it had spread to her lungs, hips, spine and right femur, it had actually ate inside her femur and on the 20th and 21st May she had embolisation to her right leg and a titanium rod placed in it from hip to knee as it was likely to shatter at any moment .
They told her there was not a lot they could do besides manage the bone tumours, but possibly shrink the other tumours and give her a better chance and more time to spend with her family.
Lyndsey has had the worst luck in the world, not only has she been diagnosed with this horrible disease, she has been diagnosed with it at a time when the whole world has spent most of 2020 in isolation, meaning she has had to spend most of her time in hospital away from her girls.
The first treatment she was offered was immunetherapy and her oncologist in clatterbridge was very optimistic about this, this was put on hold when her calcium levels raised to a huge 5,3! Normal range is around 2.6 and everyone was baffled to see her walking round and were amazed she survived it.
she spent around 10 days in whiston hospital until her calcium was down and was sent home to wait for her immunetherapy appointment , she had 1 dose of the treatment in clatterbridge cancer centre and was sent home.
whilst at home we could tell something wasn't right, she was in constant pain , could hardly move, lost her appetite and was constantly throwing up.
The GP came out to visit her and advised she go to A&E straight away.
once there Lyndsey was rushed to resus where her heart beat was raised to 160 beats per minute , her blood pressure was through the roof and it was touch and go,amazingly she survived this again , at this point the doctor came round to speak to her and issued her a dnr , which means if her heart is to stop , they will not try to resuscitate her as it would simply cause too much damage to her body and she would have no quality of life .
Lyndsey spent the next 2 weeks in whiston hospital, where it was discovered she had another larger tumour in the middle of her spine, Walton hospital got involved ,aswel as clatterbridge but no one could agree on the best course of action and what to do next, she was kept completely bed bound as they were scared any movement would paralyse her .
Lyndsey was devastated as she had always been so independent and on the go helping other people , seeing to the kids and house, she was a carer for her uncle and had just started a part time job which she loved, all her independence was taken away from her and she really struggled with this, at the end of the 2 weeks she was given a brace to wear to support her walking, which was used for serious car crash victims, this really restricted her movement and she refused to wear it . All the muscles used to walk had wasted away and she couldn't stand unaided . Her calcium was up again and nothing they were giving her managed to bring it down, so clatterbridge decided to Transfer her to the new Liverpool hospital and take over her care .
she was transferred the next morning and settled in ok, she would talk a glass eye to sleep so making friends was not a problem haha.
The first thing they done was to sort her calcium levels out, then she was told the immunetherapy treatment would have to be stopped as it hadn't given the Desired results, her oncologist Dr Chow said she would try the chemo tablet cabozantinib as it had a good success rate at shrinking tumours in advanced kidney cancer .
She started the tablets and for 11 days she was great, we even seen considerable shrinkage in tumours in her lungs, some sis grow and some new ones appeared butthis was only 11 days and they said some just need more time than others . They were worried because the chemo was throwing her bloods out of sink and she ended up getting a bug in her blood, after temps every day and cultures coming back with contamination , it was determined she was septic and the bug had gotten from
her skin into her pic line so that had to be removed and her treatment stopped for a week .
As she recovered they decided to put herback on her treatment but infection after infection meant she was never consistently on treatment , so things were progressing .
whilst in Whiston hospital we had noticed a small pea sized lump to Lyndsey's head, which we mentioned to the urology team when she was first diagnosed , it kept growing and we kept bringing it up, people would feel and say it's a cyst it's squashy and there's nothing to be concerned about , but we had a gut feeling that it was something more, so Lyndsey decided to mention it to a doctor in clatterbridge , within 24 hours she was given an mri scan plus the results .
It turned out it was a brain tumour and there was 3 pieces of disease in her brain .
Anyway over the course of 6 weeks Lyndsey was given a chemo tablet to help shrink some tumours, but she has to battle a number of infections, including sepsis which meant her treatment was on and off.
she decided She wanted to be at home with her family no matter what and left clatterbridge to return to her mums home where it was more adapted for her needs.
Lyndsey had never looked better, you could see how happy she was to be around her kids, me, parents, siblings, in-laws and closest friends, unfortunately this was short lived and around 10 days later she ended up back in whiston hospital with raised calcium , it was only raised slightly so it quickly came down and she was told she could go home over the weekend .
Again this was not to be and Lyndsey suddenly started getting blurred vision and speech , a ct scan shown no difference in the size of the original brain disease or tumour, but she was put on steroids which we hoped would reduce any swelling and settle things down.
It was becoming increasingly difficult for her to eat and focus, her speech was really bad so the doctors decided to look in an area at the base of her skull and did the first time we hoped we would find something as then we would get some treatment in the form of full brain radiotherapy, this wasn't without its risks but at this point, we would of tried anything!
The mri results came back the next day and we was told they had found something, we were actually happy at last we thought we had a chance! But we had to wait for a video consultation with her oncologist after she had reviewed the scans to give the go ahead .
Once the video call was over we were absolutely devastated, not only had they found something in the base of the skull , they had also found she had cancer in the mengines of her brain and it was too dangerous to do the radiotherapy as the lining of the brain isn't easily penitrible. there was nothing more they could do.
we are now living on borrowed time and need to raise as much money why we research other possible treatments , surgeries and doctors who can give us some hope and been successful in this type of cancer before .
we are not exactly sure what that is at the moment but just briefly looking, we know we need a lot of money to go down this road.
we realise a lot of people have done fundraisers and donated already before , alls we ask is you share this far and wide to give us the best possible chance of having a few more years if not longer as a family
thankyou to everyone involved, it really does mean the world to us , if Lyndsey were in the other position I know she would be the first to help, we beg you from the bottom of our heart plz plz help us, even if it's just suggestions of surgeries, countries, doctors etc , that would be amazing
The fundraiser says it's ran by me for Patrick Jones, Pat is Lyndsey's beneficiary and step father and will be dealing with all the money side and withdrawals .
Thankyou
Gareth
