Living with incurable Neuroendocrine Cancer

Hi, my name is Chris (aged 36) and for those of you who don’t know already on the 6th February 2021 I heard those dreaded words you never think you’ll never be told “I’m afraid you have lung cancer”. 

Roll back to 12 months earlier and an irritating little cough that didn’t want to go away. After multiple attempts to see the GP over the year because of the persistent cough and worsening shortness of breath, I finally gave up and decided to see a Doctor privately who sent me for an x-ray and lung function test. Within days of having the x-ray I was back at the hospital for more tests and scans which confirmed a tumour on my lung the size of an orange. After weeks of seeing specialists in Bristol and London I finally found out that I have a rare tumour called a neuroendocrine tumour, more commonly known as Carcinoid Cancer. 

Due to the location and size I would inevitably have to have my right lung removed but before that I needed to undergo chemotherapy to try and reduce the size of the orange sized mass. After 4/6 unsuccessful rounds of chemo it was decided that a right lung pneumonectomy was the only option and a 50:50 one at that. 

20th September 2021 I entered the Bristol Royal Infirmary for surgery and after weeks in an induced coma because of complications such a herniated heart, pneumonia, viral and bacterial infections, a stopped heart, blood transfusions and a tracheostomy I finally left the hospital on the 25th October. Unfortunately my body was still fighting on multiple fronts and a couple of weeks later I was admitted to the RUH Bath with suspected Sepsis. After 4 weeks of taking up to 40 pills a day along with multiple rounds of IV medication I was once again home just before Christmas but still on lots of meds and struggling to eat and drink properly. 

Roll on to February 22 and I found I had lost 35kg in weight and was still struggling with chronic fatigue, sickness and high infection markers. I then found myself back in the BRI Bristol for an emergency chest drain to remove the puss from my chest cavity. This seemed to do the trick and I started gaining some weight and infections seemed to be at bay. 

Late February and into early March I started to develop a back pain and put this down to putting on weight on a weak body but as a precaution I was sent for an MRI on my spine. Roll to August and I finally had the MRI scan but was noticing pain in my hips and shoulders too. I then saw the consultant in early September and unfortunately there were some lesions or secondary metastasis showing on the MRI scan so I was referred back to the Oncologist for further follow up. The Royal Free, London was the next stop for a Galium Pet Scan from top to toe to see if this was the extent of the tumours. As with the rest of my luck I was not so fortunate with the prognosis and there was secondary disease across 14 vertebrae from neck to sacrum, my pelvis, shoulders, shoulder blades, left femur, butt bone, 5th rib and the base of my skull. I’ve been told that this secondary cancer is incurable and not behaving as they expected. I’ve been placed on some anti-cancer drugs called Everolimus and Lanreotide along with permanent high dose pain medications will be only in the hope of trying to contain and control the disease for as long as possible. 

This Christmas was spent in hospital with a major flare up of symptoms due to the Chemo drugs causing issues with my liver functions and most days I was being pumped with nearly 800mg of morphine just to lower the pain. I was given more scans which again showed changes since October and the Oncologist has given a 12-18 month prognosis depending on what further treatments I respond to and can access. 

Some days are good and some days are bad but due to the tumours being in bones, I am going to need to make adaptations to enable me to move freely around the house when I have bad days and am chair bound. 

Unfortunately the new prognosis has made it pretty much impossible to look for work to be able to help support Gemma in the increasing amount of monthly bills and we fall into that space of earning as a household more than the minimum needed for more financial help and support for making these adaptations and gaining extra support when the time comes 

I have also made a goals and dreams list in the hope that this can keep me busy. Some things are for benefiting others and some are to try and make memories and do the things we’ve not been able to do because of the illness. 

• See northern lights 
• Get married to Gemma after cancelling 2 wedding dates
• Watch a Man United match in a box 
• Watch a day at the ashes 
• Raise money for a ventilator for ITU @ BRI
• Raise £5k for NCUK 
• Spend more time at the coast with Arnie (miniature Dachshund) and Gemma 
• Explore Italy in a super car 
• Appear on a game show 
• Learn to make pizza and pasta the Italian way 
• Learn Italian 
• Watch basketball at Madison Square Gardens 
• Watch a show on Broadway American road trip in a muscle car 
• Complete a banger rally in the uk or Europe

It would be fantastic to raise some money to be able to help achieve some of these goals and make a start of some positives for 2023!