Help Terry fight his rare cancer

£18,600 of £50,000 goal

Raised by 121 people in 20 months
My husband Terry Jones is a well known Ellesmere Port man, having lived here all of his life (apart from a spell living in Elton with some lovely people)  Terry is a very much loved husband, Dad and Grandad.  He is 54 years old and has worked hard all of his life to provide for our lovely family.
In May 2016, after being misdiagnosed by his GP for over 2 years, Terry received the dreadful news that he had a large secondary tumour in his abdomen, which was wrapped around his aorta, and which has also spread into his duodenum and bowel.   This came as a devastating blow to Terry, as at the age of 24 he had testicular cancer which had also spread to his abdominal lymph nodes and he had 12 months of harrowing chemotherapy, radiotherapy and surgery. Terry had been in remission. 
Originally diagnosed with cancer of the unknown primary it is now thought that the cancer has regenerated from the  old tumour left behind 30 years ago.  The cancer cells in this new cancer are so rare that there is no chemotherapy treatment available and radiotherapy cannot be given due to the size of the tumour. 
Terry was told by 2 hospitals that there was nothing they could do for him as his cancer was so rare and the complications too complex.  He was referred to The Christie hospital for their opinion.   Terry's Professor at The Christie told Terry his only chance was to have a very complex and dangerous operation, otherwise he would not be here in 2 years time.   Terry was put on the list as a priority as time was running out for him, his breathing was getting worse.  
After being warned of the complications that could arise during surgery, including a high risk of death, Terry accepted this was his only option and the surgery took place on 17th October 2016 at The Christie hospital in Manchester.
The surgery lasted 11 hours and Terry had 10 blood transfusions.  Terry survived the surgery despite some serious complications.   Terry had his aorta replaced, the large tumour was removed and also part of his bowel.  Unfortunately Terry developed an infection and also a substantial dvt in his thigh after surgery.  This delayed his stay in hospital and has meant his recovery from surgery will be much longer.  Terry is still (21st November 2016) not mobile and in condiserable pain.  He has lost 2.5 stone in 4 weeks and is very weak. 
Terry has an appointnment at The Christie on 23rd November to discuss the results of his operation and to put in place the plan for the next stage in his treatment.  We hope that the histology will confirm the exact cancer so that we know exactly what we are dealing with.   Terry is in need of long term care to recover from the operation and his dvt, and the next stage in treatment is not yet known.  
We are hoping to raise funds to support Terry through his fight with cancer and to pay for any treatment & tests that are needed.  Terry has been unable to work since June and I had to give up work earlier this year due to my arthritis.   I am now Terry's sole carer. 
Any funds that are received & not used will be given to people in similar circumstances.   We have found accessing funds to help adults fight cancer is very hard.
We are trying to give Terry the best chance of survival and we need to be quick as time is now not on his side.  The next stage (if we have to) would be for Terry to seek help internationally.
I do not want to lose my husband of 32 years, and Terry's children and grandchildren do not want to either.  We are all so grateful for all of the support we have already received from the local community.   Thank you is not enough.  Please help if you can.  Donating just £1 will help, imagine if everyone in our local area could do this - we would have enough funds to get Terry the best scans and treatment possible to make sure he has a chance of beating this horrible disease for the 2nd time xx
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Terry had a CT scan at The Christie today. He has an appointment with his oncologist on 10th November to discuss the results and have further tests. The past 6 months has been busy with hospital appointments for Terry. He now has hearing aids as his he lost his hearing after his operation, the surgeon told Terry this was a result of the trauma of the operation combined with the massive amount of drugs he was taking. Terry has also been having problems with his leg due to the dvt he developed after his operation. Unfortunately his leg will always be swollen and painful, Terry can only rest as much as he can to help with any pain. Terry has an appointment with his surgeon at the end of November to discuss a further planned operation. So although we dont post very often now, Terry is very busy with hospital appointments, and trying to get back to a bit of normality inbetween these appointments. Thank you to everyone who continues to send messages of support, they really help get Terry through the bad days.
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Terry has a Ct scan at The Christie tomorrow, it is his first scan since his operation so he is understandably quite anxious. Terry goes back to The Christie on Friday for further tests and the results of his CT scan. Thank you to everyone for your continued support, Terry and his family are extremely grateful. We will post an update as soon as we can xx
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Terry had his consultation at The Christie yesterday 23rd November 2016 and had the results of his operation. Terry saw Mr Ramani who was one of the surgeons involved in his operation. Mr Ramani said the surgeons were all pleased with the outcome of the operation, they successfully removed a cricket ball sized hard crystalized tumour. The tumour had been squashing Terry's aorta and vena cava and this is why Terry had to have his aorta replaced. What we didn't know until yesterday was that part of the vena cava had to be removed too, which resulted in a massive bleed and we almost lost Terry. The tumour had also squashed part of Terry's bowel and cut off the blood supply so a large part of this also had to be removed.
The pathology reports confirmed that the tumour originated from Terry's testicular cancer from 30 years ago but that the cells were 'naughty' dedifferentiated which means they were no longer testicular cells, they were showing signs of a rare bowel cancer. These cells can keep changing into different types of cancer. These cells cannot be treated with chemotherapy.
Mr Ramani said Terry's case is one in a million and there is no data available to show what his prognosis is as there are no cases recorded. Mr Ramani said he was 'fascinated' by Terry's case. We had been told the cancer was rare but didn't realise just how rare.
Terry is now being referred to the medical oncologist at The Christie to see what happens next. Terry needs a CT scan but cannot have one for 3 to 4 months as his abdomen in 'hot' and needs to heal properly first. So until then we don't know what the treatment plan is.
We are going to concentrate on getting Terry stronger, ready to face whatever comes next, and enjoy Christmas with our family.
Thank you to everyone for your continued support xx
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Terry has been home from hospital for a week now. Although he is so happy to be home he is struggling with pain so his pain relief has been increased. Terry is not very mobile, but the last couple of days he has been able to walk a few steps. Terry has an appointment at The Christie for 16th November to meet with the Professor to discuss the results of his operation and the next stage in his treatment. Thank you to everyone for your continued support X
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£18,600 of £50,000 goal

Raised by 121 people in 20 months
Created October 4, 2016
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£20
Anonymous
5 months ago
£20
Anonymous
10 months ago
EB
£1,070
Easter Bingo
14 months ago (Offline Donation)

Thank you to everyone who came to our Easter bingo. Thank you to our fundraising team for working so hard and putting on a great night, and to the lovely people who generously donated prizes x

LN
£20
Lorraine Neyland
15 months ago

Hi Terry Jess and I can't make the bingo hope all goes well. Would have been great to have seen you. Take care Lorraine x

TC
£98
Terry & Co Clients
15 months ago (Offline Donation)

Donations in salon by clients. Thank you all xx

RN
£701
Race Night
16 months ago (Offline Donation)

Thank you to everyone who supported our race night at The White Swan x

VR
£182
Valentines Raffle
16 months ago (Offline Donation)
£315
Chris Briggs
16 months ago
1
1
EA
£205
Ebay Auction
17 months ago (Offline Donation)
1
1

Ronaldo signed framed photo and Beolit, less eBay fees. Thank you to the 2 generous people for donating and to Sarah for listing on eBay.

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