Help Cat Mackay beat her cancer

Hello peeps, tis Mike Von Beardingham here.

As hopefully a lot of you are aware and may know, Cat Mackay's cancer diagnosis was delayed due to medical negligence and because of this, the disease had progressed and reached a stage where chemo was having little effect. She was then told basically to go home and prepare for death within 6-12 months.

Not wanting to give up, her husband Darren began researching and found a professor in Germany who had a great track record of cancer treatment. She was offered a treatment that is actually yielding results and has a chance of putting her into remission. She is still fighting against the NHS, who are continuing to make mistakes regarding her case and treatment and not even giving her the options here that the German professor could offer if she lived in Germany which could drastically change things.

The Long and short of it is this treatment costs around 4000 Euros per session. It involves Cat travelling to Germany, getting the treatment and budget accommodation.

I'm looking to raise by various means enough for another treatment session, any more than that is a bonus and will continue to do what I can with friends to help Cat in her quest to beat Cancer. She has a real shot, and if you know Cat, she'll fight tooth and nail to keep going and not admit defeat.

Let's give her that chance xxx

Here is the full story in her own words below:

Cat Mackay – Cancer and Me!!

In February 2020 ‘just prior to lockdown’ I was admitted into hospital in Aberystwyth with pain and other symptoms, while there I had a CT scan and an Xray, it was at this point and they found a thickening in the bowel. They did not explain the connotations of this but I was immediately red flagged for a biopsy, the doctor on call was concerned, they couldn’t do the biopsy until the following week so as I was stable I was allowed home, I saw a consultant Gastro Surgeon just before we left and he gave me his email address requesting I sent him a chronology of my health over the years, I returned home and did as he requested and waited anxiously for the urgent appointment to arrive. I informed my employer and of course my head was full of the worst thoughts. But we heard nothing back. no appointment arrived; they did not send for me to do the URGENT biopsy they had said I needed.

I continued to be unwell, my energy slipping away, I went to my GP many times and both myself and the GP tried contacting the hospital but had no response, My GP tried emails and calls requesting investigation, I emailed several times too, but nothing happened, eventually we received a letter from the ‘consultant to say I was too complex and to refer back to Essex. (I moved back to Wales from Essex at Christmas to be near my family).

I continued to feel unwell and eventually another GP from my local practice, finally referred to Hereford after my bloods showed anomaly in cell count and iron.

The referral was sent to the Gastro surgical team at Hereford for investigations, I received a call from a doctor remember who discussed my symptoms over the phone.

This unknown Doctor arranged a sigmoidoscopy the following week. I attended the endoscopy unit on 14th August 2020 and a Dr Tim Hughes carried out the procedure taking 5 biopsies and removing a polyp, as I left he looked at me and said he was sorry, at this point I knew something was seriously wrong.

The following week I was again contacted by the same Doctor who arranged for me to have a full CT scan which took place on the 22nd of August 2020.

My GP contacted me the following week to ask if I had heard anything, but we had not had any contact from the Doctor at Hereford since. A further two weeks went by and on Wednesday 9th of September (Now 5 weeks since Biopsy) I called Hereford Hospital only to find out that the Doctor who had arranged all the tests had been a locum and had now left and that another doctor would be taking over my case, I asked to speak to him but apparently, he was not starting until the Monday 14th. On Saturday 12th of September 2020, I received an appointment to attend the clinic on Thursday 17th September at 12pm.

I arrived at the Clinic on time, a nurse weighed me and asked me a few health questions and then I was shown into a room where the doctor was. I sat down and he introduced himself, he seemed relaxed and of course I was quite anxious. He had my file open on the first page and started to discuss my diverticulitis, I explained to him I was fully aware of the diverticulitis and had been managing it for a long time, I was more concerned about the bleeding and the results of the biopsy, to this he looked up at me confused, he then turned the page and started to read out some clinical phrases, he then looked up and his face was blank, “you have Cancer” he said, he just came out with it, there was no sensitivity or gentleness… he looked extremely uncomfortable, he then looked down again and continued to say there were also spots in my lung and liver, again he did this in a matter of fact way... I felt extremely shocked and upset indeed, I felt like I was being slammed into a brick wall at 1000 miles an hour. This devastating news was done so insensitively. I stood up and said that I was angry, I also began to tell him about my admission to Aberystwyth hospital back in February 2020 - before Covid Lockdown, that I had been red flagged for a biopsy by a gastro surgeon and that no follow up transpired, I was shaking, I was so upset and he wouldn’t look at me, I further explained about the several letters and email exchanges from both my GP making it clear that it was urgent. The words just rushed out.

I asked the doctor if this had this been diagnosed 8 months earlier in Aberystwyth would the prognosis be the same? would it be in my lungs? he just looked down and he didn’t answer, he finally looked up at me and got up from his chair and hurried out of the room at what can only describe as a very speedy pace, leaving me alone, as he pushed passed me I asked if my husband could come in, he mumbled yes to my request and dashed out of the door. I could hardly focus as I called Darren; I blurted out the words of the doctor to him. One of the nurses went to get Darren from the reception and brought him to me. The doctor returned to the room head down, he then relayed the same information to my husband by which time a Stoma Nurse, had joined us in room, she too looked very confused. The doctor was clearly extremely uncomfortable, understandably his harsh words had left us quite numb. As soon as he had repeated the information. The doctor then went on to arrange a stent to be fitted into my bowel, he told me this was because there was a narrowing and they needed my bowel to be kept open, that during any treatment my bowel would swell? this was the only information we received, I was obviously willing to do whatever was/is necessary to help me. He then left the room at a speedy exit at the first opportunity. Darren and I and I were in severe shock, and we had no time or support to absorb the information.

I was so upset to be given this news in such a cold and unfeeling way, it was clear that the doctor had not read my file prior to my attending his clinic, had he done so he would have known my diagnosis;

The Stent procedure was carried out the following week on Wednesday 30th September in Hereford Endoscopy unit.

Immediately following the procedure, I had issues, the discomfort was quite extreme, but I was told the stent fitting had been successful. I went home but was unable to pass any motions other than a small squirt of air and a lot of pain. By the following day the pain was agonizing, I called my GP who prescribed codeine. I took them at first but then realised that they were not good for such a condition as they caused constipation, sense told me that straining could compromise the stent so I discontinued, and I chose instead to endure the discomfort hoping it would settle.

On Friday the 2nd of October 2020 I finally went to see an Oncologist in Cheltenham, (no covid safety was apparent when entering the hospital and there were two sanitising stations, both empty.)

I was shown along a corridor into a small dingy, dim lit room, Again, my Darren was not allowed to attend with me, I was so scared, at this point no one had said I was terminal. After entering the consultancy room, (if you can call it that) I put my Darren on a video call so at least he could be involved in the discussions. The first thing the Oncologist said was that she had only just received my file, she talked a lot about things we did not understand so Darren began to ask some direct questions, he asked what the prognosis was, she fumbled a bit but eventually she said 18 months to 3 years 'if it was the colon cancer was the primary' a little more if it had been caused by the Baac gene which I was identified to have many years prior. Darren then asked her what treatment ‘options’ were available to perhaps extend this period, she said and I quote, 'we do not offer options as what we offer is adequate “ We were absolutely floored, we sobbed and sobbed, we had no treatment plan, no hope. We knew that there were always options no matter how slim, we had already been researching.

I was then sent to have fresh bloods taken and I cried so hard my whole body shook. I couldn’t take it in. I walked out the hospital to the carpark, my head was whirling, this can’t be happening, Darren was in bits, his face bright red and tearstained, we sat in the car for what felt like hours and sobbed together, my poor Darren had to not only endure listening to the news that his wife had only a few years to live at best, but had to also he had to sit alone knowing what I was going through and wanting to be with me - for almost an hour he sat in pieces waiting for me, the trauma of finding out you have cancer is difficult enough to handle but to have not only been delivered the diagnosis in a callous and cold way, we had also endured a very cruel and cold prognosis with no hope or positive pathway.

To complete this awful situation, my pain increased to such a level that I ended up in Hereford A & E on Sunday 4th October where it was determined that the stent I had been fitted with had slipped. After spending the entire night on a trolly in A & E I was finally admitted on Monday 5th October and I was taken to theatre to have the stent removed, resulting in major surgery and a looped ileostomy stoma fitted.

I was given little information relating to managing a stoma, Minimal dietary information (Except a white diet which I later learned was a temporary measure) it took several months and a move over to the Merthyr (Prince Charles hospital) Stoma Unit before I received and any Stoma support, this was also a one-off support session).

I was placed under a Gastric Surgeon who questioned why I had not had an MRI prior to the stent being fitted, he also seemed concerned that the stent had been fitted in the first place? however I am sure this will not be something that can be clarified as I am also not naive in knowing that it is not the done thing to question openly another professionals’ methods. Whilst waiting for surgery a nurse (Sadly I was under pain medication so did not get her name) slipped me a piece of paper and told me to contact the Velindra Cancer Centre in Cardiff.

Whilst in hospital my husband researched the Oncologists at the Velindra and found a Dr Seema Arif who worked both at the Centre and at the Rutherford.

On discharge we contacted her secretary with the view to a private appointment, but she saw me the next day on the NHS. she was and is an exceptional Oncologist, she made us aware of treatments that could help, no it couldn’t cure me but could certainly extent my life, no guarantees. She wanted to put me on the fox trials list but they were on hold due to Covid. She informed us about the drug AVISTAN which was apparently available on the NHS for my type of cancer up until 2014/16? etc… but along with a whole host of drugs they were removed from the NHS list and given over to the private sector, a financial decision, it is now only available for leukaemia and a few other things.

Darren instantly set up a go fund me page for the AVISTAN treatment – we received a lot of support and encouragement and raised enough for me to start having the Avastin along with an NHS 1st line treatment, Oxaliplatin. All went well for a long while, initially showed positive results, the larger Tumour in one of my lungs has reduced significantly and there is signs of shrinkage in both the bowel and Liver, this would not have happened had I just accepted ‘adequate’ treatment and my time here would be drawing to a close. We have raised over 9K in 9 months, it sounds a lot however, at almost £400 every two weeks (£800 per month)

My chemo was not able to start immediately, and I had a further 4 weeks delay due to the surgery. On discharge, Hereford sent me an appointment for an MRI the following Monday, ‘I still had metal clips in, if it wasn’t for Darren, I ringing the day before the MRI we would have travelled 70 miles to be turned away!!!

Eventually I started my Chemo and with the help and encouragement of friends and family we have fought hard. I had a blood clot in the lung and now have blood thinners, the progression was slow, and we were waiting to hear if I could go on trials that may help more, however nothing transpired.

At the end of July 2022, Dr Seema Arif called me and said that that my treatment was starting to have less effect and that she was putting me on 2nd line treatment, the Avastin would stop. I missed a couple of the new treatments due to low blood count. Suddenly in September 2022, she took me off the treatment and put me on a tablet, told me to go home and prepare for death, 6 months, maybe 12 if I was lucky!!

We questioned her, she could give us no real answer, the tumour in my Liver had gone and although the others were still there, the growth was slow, however, since moving off 1st line treatment and the Avastin, it had progressed, it made no sense why this decision was made?. We asked her directly if it was a financial decision, she turned away and said – and I quote “I do not get involved in financial decisions” she left. We came home, once again devastated and it was as if we had been propelled back to September 2020!!

Of course we did not accept this and Darren began researching. He found a Professor Thomas Vogal at Frankfurt University Hospital, we spoke to him direct, and he gave us an appointment to see him the next week. We found the money through the kindness of friends and family and a few small donations to our gofundme page. The total cost of the trip was 3, 900 Euros and flights, and budget hotel. About 4k

From the second we walked into the professors office we knew there was hope, we had sent all my medical records to him and he said quite strongly that he could see no reason why the UK had stopped my treatment! He was quite angry. He said he could extend my life by years and with quality, whilst this was amazing to hear, we were of course still apprehensive. But instinctively we knew he was a light of hope, his reputation supersedes him, he is world renowned and is known also as sherlock Vogl. The treatment or procedure is called ‘Transartereal Chemomobilization” they enter through the femoral artery, using a long wire like thing, it has a loop on the end. Basically, he captured the tumour and seals it then injects with high concentrate chemotherapy, this then kills the tumour at source. This can be done to any tumour in the body1st . Also, It does not have side effects. I was given an MRI and then taken to the theatre where he performed the operation/treatment while I was awake, I watched every moment, it was fascinating. I then had to lay still for 4 hours, then a scan and then another meeting with the professor. It was then I learned more about my Caner. The Primary was in my Bowel but in total I had 5 tumours in my left lung and 8 in my right. The NHS never told me anything. He showed me the one he had just treated; it was quite large and solid. Treatments would need to be every 5/6 weeks!! Panic hit my body as to how the hell we would finance it but we would find a way, we had to.

Through the skin of our teeth and incredible support I have now had 4 treatments (total cost to date 16K) how the hell we have managed that is beyond me, we used what was left of the GoFundMe, some financial help from friends and Darren pulled in a small pension he had but now this is all gone, and the panic has returned.

Results to date are:

1st tumour treated – now looks like a factle and has reduced in size and density by 35%

2nd Tumour, similar and reduced by 20%

3rd Tumour treated – 12.5%

Had 4th one done on 3rd Jan.

Since the treatment started my Oncologist has put me back on Chemo, she is astounded by the results, however it is still a fight and still errors being made. When she put me back on chemo she forgot to give me a vital drug that helps my immune system which resulted in me having a platelet transfusion and a blood transfusion. This error has now been corrected. On another angle, the tumour in the bowel (the primary) has been infected twice now, Professor Vogle said if I lived in Germany they would nowremove this as it is dangerous toleave, to wait until it is an emergency operation due to infection could result in death, also, to remove it now would stop any further spores, however, my oncologist wont even discuss!!

The upside is, if I can continue this treatment and as long as the UK continue to give me chemo I have a real chance of reaching remission, no guarantees but if there is hope then I have fight, I/we just need as much help as we can possibly get.

I want to become an advocate to others who have been victims of NHS negligence and once my case has gone through court then I want to shout loud and hard to help reduce this happening for others.

Well I have waffled enough, hope this is enough, just let me know if I can give you anything more, I am sure there is a LOT more to say but you would end up with an encyclopaedia!!

Thank you for EVERYTHING!!!