Surgery not an Option

Lance Schofield has been diagnosed with a stage 4 brain tumour and without assistance he cannot afford to seek trial treatment in Germany:

Tony (Lance's dad) has asked me (Lance's mum) to write about the nightmare Lance, who deals with it better than the rest of us, and his family, are going through. Where do I start??? Obviously, this is written from mums’ perspective.

It was October/November 2012 when Lance started complaining of headaches which Paracetamol did sweet nothing for. This particular morning, he said he was not going to work as he had been up all night with a headache. I was also home that day and was sitting in the living room when I heard something but didn't know what it was so went upstairs to see Lance. When I got there, he was tossing his head side to side and when I tried to wake him I couldn't. I panicked and shouted Garath who was downstairs. He came up and shock him and slapped him which brought him round but he just wasn't his usual self. I rang the docs who said I needed to ring an ambulance which I did. When they arrived, they did what they do and said there was nothing obvious but suggested Lance go to hospital but he wouldn't.

He went several times to the doctors following this who came up with things like a virus, infection, migraine, all of which it wasn't. One Saturday morning at the beginning of December Lance and I was home and my car had been blocked in when Greg came around to see Lance so I suggested, as Greg could get to his car maybe he would take Lance to the opticians. Mish had previously suggested that he gets his eyes checked. Anyway, a while later Lance rang to say that there was something on his optic nerve and they suggested he went to hospital. They had contacted Pilgrim Hospital and said he should go straight over which we did.

The optician at the hospital confirmed something on his optic nerve, but said it needed further investigations. We were taken to A&E by the optician but still had to wait. By the time he was seen and finally had a CT scan, while waiting for the results he was told as he had been waiting so long they had to give him a bed, a sandwich and something to drink, followed by, you would be better to stay here and wait the results. Lance did not want to stay but I told him, stay and get your results and ring me and I will come and pick you up.

However, by the following morning Lance hadn't rung so we rang the hospital to be told he had been admitted. When we arrived, we were told he was waiting on an MRI scan. By evening visits, he had been moved to another ward and was still waiting on the MRI.

The following day I went in to see him to find he was still waiting on the scan and he had been given some pills to take but didn't know what they were for. I did ask when I saw the doctor but cannot really recall what he said, something about while waiting for the scan.

I popped in to see Lance before I went into work on the Tuesday to find he was still waiting for the MRI. Whilst at work I told one of the doctors that I worked for what had been going on and she came over to see Lance with me and then went to see a colleague in the x-ray department. I'm convinced that it was thanks to her making enquiries about 'her secretary's son' that Lance rang me after visiting to say he was being taken to Queen Medical Hospital in Nottingham.

We made our way over for visiting on the Wednesday to find Lance siting on his bed playing his phone. What he told us we couldn't believe we were hearing. He went on to say that when he arrived the staff asked him what he knew about why he had been taken to Queen's Med and Lance said "nothing, they haven't told me anything". To which he was told he had a brain tumour.

Not long after that a doctor came to see us and told us Lance needed an MRI to see exactly where the tumour was and then they would operate and remove it. The pills they were giving him in Boston were steroids to try to stop it growing. I can't really explain how we felt other than it's something that happens to other people.

We stayed the day with Lance and during that time he was called for an MRI and was told he would be operated on first thing in the morning. In hindsight, I wished I had stayed at the hospital that night. We were texting back and forth for much of the night, understandably Lance could not sleep. His op got put back a couple of hours and after not hearing from him from around 10.00 that morning I presumed he had been taken down to theatre. It was Thursday 13 December 2012 and it was the most horrible day waiting for a phone call to say Lance had had the op and we could go see him. We finally saw him being wheeled onto the ward and he raised his arm to wave to us, it was the biggest relief. His head was covered in bandages and a drip in his arm but they were confident they had got it all.

Friday morning Lance was up and about and by Saturday they said he could come home. Lance had given consent for the tumour to be examined and told they would ring him the following week with the results. Lance was not to be left alone, even when going to the bathroom he was not to lock the door as the surgery could cause seizures.

The following Friday Lance received a call from Nottingham to say that the tumour had been examined but due to the type of tumour he would need radiotherapy and chemotherapy. After that call is the only time in all of this that Lance actually said, "why me, what have I ever done to deserve this". He never complains, just says "s... happens", "that's how it is".

Following that call he received a call from Julie Coventry who was to be his nurse, giving him an appointment for the oncology department to discuss what was to happen next.

We attended the appointment all on tender hooks not knowing what to expect. One of the first things Dr Murray (the then consultant) said turned my stomach, "you no longer have the normal lifespan of a man your age" and it always sticks with me. She also said it was the type of tumour that can come back and it's not so easy to treat if it does.

What was to follow was Lance to go to repeat appointments to get a mask made for the radiotherapy followed by 6 weeks of attending the hospital every weekday for the radiotherapy in conjunction with chemotherapy every day for 6 weeks. Lance was amazing, never complained, just regularly took himself off to lay on his bed because he was shattered. During all this he was also taking steroids and ballooned. He hated the way he looked.

This was followed by another MRI which praise the Lord gave him the all clear. Wow, amazing, over the moon. Now Lance could recover from his treatment, get his driving license back, return to work and to normality.

Lance did return to work gradually but as he didn't have his licence, while he reapplied for it I took him and fetched him back. He got a letter from the DVLA saying he could drive pending investigations, which made his day as cars and messing with them was his life. He went and bought himself a GT4. Things were looking up.

Then he went into work to hear his branch was closing down and if he wanted to keep his job he would have to work in Lincoln. Lance took it upon himself and went job hunting and found himself a mechanic job in Grimsby. As it was too far to travel from home he also got himself a flat organised. Garath (his brother) and myself took a day off work and helped him move all his stuff into his flat and his tools to his new place of work. We all came home, Lance driving me home, to a letter for Lance from the DVLA! OMG they had revoked his licence!! He tried to ring them and explain about his new job and needing to drive but they said no. He went to his new place of work on the day he was due to start and explained what had happened and they were very supportive and gave him a month to get his licence back while they kept his job open, but even after getting the GP to ring the DVLA they would not give him his licence back. Therefore, he lost his job and had to give up the new flat, losing out on the rent and move back home.

Luckily before he had been to college to become a mechanic he had done Civil Engineering at college, therefore his Dad spoke to his boss who put him through a refresher course and he started him as a Site Engineer. This meant he did not have to drive and was able to get a lift with other members of the company.

March 2015, he finally got his licence back which meant he was able to drive, yippee, happy again.

Unfortunately, 6 August I received a telephone call at work to say Lance had passed out at work and been taken to hospital in Cambridge, where he had driven to earlier that morning. Apparently, he'd had a seizure. Thank God it hadn't happened while he had been driving.

IT WAS BACK! They told him to go back to see his team in Lincolnshire and in the meantime, he was to take Keppra to stop him from having any further seizures. He saw them and was sent back to Nottingham to have it removed again. Lance requested not to be put back on the steroids as he did not want to balloon again, but he did have to take them for about a week either of the operation.

He just took it all in his stride, I think detected a tremor when they came to take him for his op but as his Dad says, "you are my hero".

This time he did not have radiotherapy as he had apparently had all a body can manage last time and as Nottingham were sure they had it all Lance declined chemotherapy and wanted to get back to work. So that's what he did with MRIs planned for every 3 months.

Somewhere in all this I turned 50 and Tony said to get my trip to Yellowstone booked (it had previously been going to happen prior to 2012). Anyway, I got it booked and wouldn't you know Lance's appointment for the results of his latest scan came through for the middle of our holiday. I asked Lance if he would change it so I could be there but he said "no, go on holiday, whether you are there or not will not change the outcome". I wasn't happy but what could I do? So, September 2016 Tony and I went on holiday.

The day of Lance's scan I kept messaging him asking if he had been until he must have got sick of it and rang to say, "it's back and this time they cannot operate". OMG what has he ever done to deserve this! I just wanted to come home.

When we came home Lance was yet again of the opinion that "shit happens". If it does bother him, he's not letting on to us.

We attended another appointment to discuss what to try next and it was again to be chemotherapy which would start after Lance retuned from his previously booked holiday and asked if he could move back home while he was having it.

While Lance was on his hols Garath and myself scoured the internet for cures or something to help him, don't eat this but eat that as it has magical properties, don’t drink this, and of course aromatherapy that my friend we had stayed with while on holiday introduced me to.

When Lance returned we showed him all our findings to which he said he would try along with his chemotherapy. He went on to have 3 cycles of one chemo which did nothing, his letter read, "tumour progression", and so was swapped to another. After 3 more cycles, he had another scan and when we went for the results they said again the chemo hadn't worked, he could continue with it or try another one. We asked about cyber knife but was told no as he had already had so much radiotherapy. We asked if it had grown in a certain way would surgery now be an option, but no. So, left that appointment with Lance still booked for chemo the following week while he thought about whether to change his type of chemo.

I took him to his chemo session the following week and when I spoke to Julie his nurse, she said that even though it had grown, part of it had shrunk. I asked how she knew this and she said after his last appointment she went on to look at his MDM notes that's what it said.

Since his last chemo session Garath has spoken to someone who told him about a clinic in Germany who has helped with breast cancer, the only drawback being that it costs thousands, but they had set up a page for people to make donations to help pay for it.

So, while awaiting his scan results next week Lance has contacted this clinic who have been in touch and the first step is to acquire a sample of his tumour to test and then go over for a consultation. This alone is over six thousand pounds

Further to what I wrote, Lance has continued to have chemotherapy and all the other concoctions we come up with for his Anaplastic Pleomorphic Xanthoastrocytoma, an extremely rare brain tumour.

He had the scan that looked like part of it had shrunk followed by two more MRI's where the tumour had not grown, so off we all went on holiday thinking at last Lance is getting the better of it.

However, on our return Lance had about a month of being continually tired and irritable and I just knew he was not his usual self. One particular Sunday in October 2017 he went off with a couple of mates for food, but never made it to lunch. Johny, his mate who he was with when he had his previous seizure, rang Garath to say they were pulled up on the A17, Lance had just has a seizure. Obviously we all raced over to them to find Lance in an ambulance. He had come round, but couldn't remember what had happened and just felt very achy which apparently is part and parcel of a colonic tonic seizure. He was checked over at Grantham Hospital and told to see his team at Lincoln.

On seeing his Lincoln team an MRI was requested and a decision to reduce his dose of chemotherapy was made. Luckily the MRI this time showed no change and Lance continued to have a further three sessions of chemotherapy every six weeks at a reduced dose. Even though Lance appeared to me coping with the chemo, it builds up in the body and takes it toll and this was the reason for the reduction.

Early 2018 Lance was getting frequent headaches and it was suggested that he start taking steroids again and a further MRI was requested. We all turned up for the appointment at which he would get his results to find it had been cancelled but no one had let us know. I'm sure you can imagine how we were all feeling.

A further appointment was made but only Lance and myself were able to make this one. We were told what we were dreading but expecting to hear, that the tumour had grown! It was decided to try yet another chemo.

During the first session I heard him tell someone that he didn't think it was working cos he was feeling fine on it. However, the second session four weeks later really took its toll with increased tiredness and headaches. It was suggested to increase his dose of steroids but I had also noticed him squinting a lot and when I asked him about it he said his eye ached. I mentioned it to family members who had also noticed, so I contacted his nurse who thought an eye test would be a good idea but Lance wouldn't go.

The following weekend we were out for his Grandad's birthday meal and I heard Tony say something to Lance about his eye and suggest he get it looked at. The following morning I said to Lance you might as well go as I'm sure the consultant will suggest it, so off he went with his Dad.

His eyes are playing up because the tumour is putting pressure on his optic nerve. Another MRI has been requested and we have asked if there is any chance that the tumour be operated on. We know they cannot get to it all but hopefully at least they will be able to relieve the pressure on his eyes and save his sight.

Whilst waiting for the results of the MRI I have emailed a Professor who does private DCVax to hope he can offer something, even though it £100,000 a session. Also, we have requested our GP to ask for a surgical second opinion from a surgeon in London.

Well it's been a while since I have wrote, but the DCVax and the second opinion went out the window as Mr Smith at Queens Medical Centre agreed to operate.

I took Lance to see Mr Smith to discuss having the tumour debulked at which we saw his latest scan. The tumour had filled the cavity which had been left after the two previous surgeries. Lance was asked a lot of questions, did he have any problems with his speech or his limbs to which Lance said no. When Lance came to sign the consent for surgery Mr Smith asked him if he had always been left handed to which Lance said yes. Mr Smith went on to say how interesting that was as where the tumour is, is part of the brain which controls speech and he would have expected Lance to have been having problems with speech, but it has been found in left handed people that part of the brain is sometimes in the opposite side, so maybe that's how Lance 's speech (thank god) is still fine.

So, July 2018 Lance yet again had surgery. Mr Smith said he was happy with what he removed which was more than he expected but obviously he could not remove all of it as he could have left Lance disabled. Lance was sent for an MRI and allowed home.

Lance's forehead looked swollen and on a check up with the GP he was started on antibiotics, just in case. However this continued for weeks and after talking with the team in Nottingham it was suggested I take Lance to A&E. After several hours of waiting and tests Lance was admitted to Lincoln County whilst waiting to hear back from Nottingham and nil by mouth. Approximately 24 hours after arriving at A&E, still nil by mouth and a drip attached, it was decided Lance was not going to be admitted to Nottingham but was to be discharged home with an appointment for a lumbar puncture the following day.

So, the following day off to Nottingham where it was decided to drain Lance's forehead directly rather than a lumber puncture. A couple of hundred millilitres of spinal fluid later, Lance's forehead looked normal and was bandaged and instructed to keep the bandage on as long as possible to help it heal.

The following morning when Lance got up the bandage had moved and his forehead was swollen again. As I'm sure you can imagine Lance was not happy.

It took all day but I finally managed to speak to one of doctors in Nottingham and it was decided when a bed became free Lance would be admitted and a shunt put in to drain is forehead.

It was three days later when Lance got admitted but the swelling had begun to drain itself. However, surgery was planned for the following day. Luckily by the following day it had drained even more and it was decided to not operate and Lance was allowed home yet again.

A couple of weeks later, for the first time in the six years Lance has been dealing with this he got really low, not eating, drinking and not wanting to get out of bed. You couldn't blame him, he's been the strongest of us throughout this. Tony and I took Lance to some friends for the weekend but he hardly got out of bed, we arranged to take Lance for breakfast but it was gone lunch before we got anywhere.

While all this was going on the go fund page was up and running to raise money for Lance's tumour to be tested in Germany and people were doing amazing things. A coffee and cake sale were arranged to make money, a friends friend donated her bingo winnings, a bike ride from Delden crane hire yard to Holland and a charity breakfast were among what these amazing people did to raise money and a very big thank you to everyone as enough was raised to get the tumour tested.

While this was going on Lance had a follow up appointment with his consultant in Lincoln where she told us about a trial in London that has promising results.

This trial was through Care Oncology in London who we contacted to see if Lance would be eligible. They contacted Dr Sanz-Torre, Lance's consultant for all his ongoing treatment, etc and invited us down to London. The science behind this was explained to us and it all sounded fantastic if it was to work as hoped and Lance signed the consent to begin this trial.

The science behind this is that well known drugs are taken that starve/kill the cancer cells and which don't have the damaging side effects of chemotherapy.

We have now heard back from Germany who have tested the tumour and among other treatments have offered immunotherapy. However, this further treatment is now going to cost n the region of £40,000.00 per session and we do not know how many sessions he will need