Please Help with my terminal cancer.
Hi, I am Maria. This time last year my world as I know it fell apart, when I was diagnosed with terminal cancer. Like most people, I never thought this would happen to me, despite losing my mum to cancer. My brother and the last few months my dad also, have been diagnosed with cancer, and I have always donated to animal and cancer charities and tried to help people when I can, but now it has happened to me, and I have to keep fighting. I have worked hard all my life, and been a single parent for over 20 years to 5 gorgeous kids, who are beautiful inside and out. Sadly, my eldest twin Ian is no longer with us, but I feel he and my mum are with me every day. I also have grandchildren aged 2, 7 and 10 and one due in April. They are all amazing and I have always wanted to protect them and help them. I am so stubborn and independent when anyone offers help, as I want to do everything myself. So I am finding this very difficult but, do need to ask for help and support.
I know there are many families and people who have probably been through much worse, and at least I am grown up, as sadly too many children are taken far too young as was my own son, but I have to try. I am not ready to die and leave my family.
So, it started last October. I was still working but had been coughing phlegm for weeks. I then started to get pains across the back of my shoulders so went to my GP. The nurse practitioner said I had a lung infection, and sent me off with anti-biotics. After I finished the course I returned as the pains was still there. She listened to my back and said my lung was now clear and the pains were due to the length of time I had been coughing. I wasn’t happy with this and asked for a scan but she said she wouldn’t request one. Eventually after requesting to see someone else, I was sent for an X-ray on Friday 1st December 2023.
Things moved quickly over the next week or so, as on the Monday the Doctor called me and said the X-ray showed shadows and I had to call Radiology to arrange a CT Scan for that evening. I had the scan and my GP Surgery called me the next day to say I had a telephone appointment but could I go in instead. I asked was it for my results and after being put on hold the doctor came on the phone and told me it was cancer, and to go to discuss it. She only knew the basics that I had lung cancer and she would refer me to the respiratory team.
I got a doctors note for work as I was a total mess. As I had had a few friends who have sadly passed away weeks after being diagnosed, I thought it was the end for me. I couldn’t ask customers medical questions, as I would just breakdown, plus I was short of breath and my role involved a lot of talking and asking questions. I wouldn’t even put my Christmas lights outside, so that my kids wouldn’t have the hassle of taking them down. I couldn’t stop crying, all I could think of was my kids and grandkids, and didn’t want to tell them and spoil their Christmas, although I didn’t even know at this point if I would survive until after Christmas. I know that many families face tragic events during Christmas time, and I am no more special than they are, but to me my kids are, and as said I always want to protect and help them. So I just put on a brave face and still had my grandchildren at the weekends. This was good though as it helped me be happy whilst I had them and occupied me. I just love them so much; my family is my world. If I didn’t have any kids I wouldn’t have been as broken.
Luckily I made it through last Christmas, and feel so blessed that I am still here, and feel confident I will make it through his Christmas. As My daughter and Granddaughter had a holiday to Disneyland in the February, I still didn’t want to tell them as I didn’t want to put a dampener on that, so kept it to myself. I had an appointment at the respiratory clinic at St Helens hospital, where they done blood and lung tests. The consultant told me that I definitely had lung cancer which they class as terminal. She also advised it was also in my spine and sternum. This made me feel so much worse. She then referred me to get a PET scan and a Bronchoscopy (Biopsy). I had the Scan at Liverpool Royal hospital and Biopsy at Whiston hospital. My eldest sons Partner Shell took me for the biopsy as I was sedated and needed to be collected and taken home, but I didn’t at this point say I had cancer and just said it was just tests, but a week or so later ended up telling her as she kept asking how my appointment was and what was results, but swore her to secrecy.
On the 28th December I had an appointment at Whiston respiratory clinic. The consultant said they had the EBUS results (biopsy) but I would have to wait another 2 weeks as they needed more information , as the sample form biopsy were sent for further testing and analysis to get the markers. She said the results confirmed that the cancer was metastatic and therefore incurable. The full term on the summary letter sent to me is Confirmed T4 N2/3 M1c Lung Adenocarcinoma. Any treatment given would not be curative and would only be to give me as long as possible to live, but it was definitely terminal. To me this was devastating having to wait. I had cancer growing, I was scared, I didn’t think I was going to make it much longer. I asked how long and she said I only had a few months without treatment, or 1-2 years with treatment. I had already knowingly had this since at least October and probably longer. I was diagnosed on 5th December and still had to wait, expecting I would die very soon without treatment.
I was desperate for help, I had been searching for help and miracles and then spoke with my neighbours, who saved my life I feel really. They told me a lot of things to do to help as they get advice from someone who has helped a lot of people. As soon as I was diagnosed I had already packed in drinking, sugar and was googling everything before eating it, seeing what’s good for fighting cancer and what helps it grow and isn’t. I was eating lots of nuts, garlic, fruit and vegetables with turmeric and other herbs. My neighbours added a lot of other things which I started doing as soon as I bought everything. I also ended up telling my eldest son early January. He is into herbs and natural remedies and also gave me lots of supplements to take and made some capsules.
Speaking to them really changed my perception and give me hope and positivity, as they said their friend had cured people who were stage 5. So now I had the fight in me. I was and still am so positive and determined to beat this, I have too for my family. I try my best to stick to the natural things I have been told to have, its just so expensive. These are;
High Strength Vit C and D
Juices made from carrots, beets, red and green apples, lemons or limes.
Hydrochloric Acid with Distilled water
Soursop leaves
Turkey Tail
Black Seed Oil capsules
Celtic salt
Chlorophyll
Mullein Leaf
Basil
Nettle Leaf
Chaga
Tea with turmeric, ginger and lime
Drink only distilled water
Eat only Alkaline foods
I hope this list will help others fight this horrid disease, as I believe this is what has also helped me so far, as well as treatment.
During my wait for results, I was offered and had Radiotherapy as some of the cancer was close to my spinal cord, and they were worried that if it got any closer, I would lose feeling in my arms and legs. They only gave me one zap but this must have worked, as I can still use my arms and legs. I do lose feeling the odd time, but only for a second. Like my left leg will just go on me, or my hand just drops something, but mainly I’m ok in that sense.
Finally, last February after an excruciating wait, they said my markers were back and that it was a rare type of cancer. I have never been given another name for it but was told it was now in my liver. I was so shocked. Was it growing/spreading that quick, or did they just not spot it or mention it from my first scan? My consultant said my best option was targeted therapy in the form of 2 tablets a day called tepotonib. I then had to wait another 2 weeks for an appointment and assessment at the lilac centre in St Helens hospital. I had to go every 4 weeks to have bloods done the day before going back to collect my treatment.
Every appointment I had I was pushed to telling my family. I had got round to telling my two older brothers, and one of them was under the same consultant as me, but has never had to have treatment.
Again I asked them to keep quiet and not tell my kids or my dad. My dad has his own health issues and I didn’t want to worry him, even though they said he would want to know. I mean of course I would always tell him, but didn’t want to at that point. He had had enough worries and stresses with my brother being ill and other worries, so I didn’t want to add to that. In March, I decided to tell my kids, as I wasn’t sure how much longer I would be able to hide it. My neighbour Becky also made me realise that they may hate me for not telling them. Like if I got really bad, they may feel awful that I had been looking after my grandkids all this time and not saying anything. They may feel they have put on my too much, even though I want to have the kids. I just didn’t want them feeling bad for not knowing. It is one of the hardest things I have ever done. It was hard when I told Jamie but when I did that it was sort of blurted out after he had had a drink and so it didn’t register why he was with me. He only clicked after I had gone so I didn’t see him get upset. I never want to upset any of my kids, and telling them one by one, seeing them cry, just broke me. Tell your family they said, you will feel better, they can support you. I certainly did not feel better. I felt worse, knowing that I had scared them and put this worry on them. They have their own families and worries to deal with. They have been so amazing and supportive though, but they have always been like that anyway. I just hate knowing they have this constant worry.
At Easter my daughter took me to Crealys, Sooty land. It was amazing. I did notice that my ankles swelled and I was getting short of breath more. I had an appointment in April, that I was told the tablets were not working. He asked how I was and told him about my symptoms. He said my lung had filled with fluid, and the tablets were not doing what they should have in the time I had been taking them. The fluid was either because of the tablets or the cancer, and I was short of breath because it was a lot of pressure on my heart, which is why my ankles were swollen.
My world broke again as he said the best option would be chemotherapy. Just as I had been contemplating going back to work, as I had lots of hope, I felt like I did when I was first diagnosed. I was scared and petrified of chemotherapy, as it can kill you. It kills good cells as well as bad. I wasn’t aware until my neighbour told me but it has mustard gas in it, what was used to kill during the war. He had said whatever I do, do not have chemo. The consultant did say that he had a patient, whose prognosis was worse than mine, and she is still here over 10 years later. She had the treatment he wanted to give me, which was 6 sessions of Chemo, alongside Immunotherapy for up to 2 years. My treatment would be 4 drugs. So I was a mess again and he told me to go home and get my head around it and come back a week later.
On my return I saw the 1st consultant I had seen. By this time my breathing was that bad, I dreaded having to go up and down stairs, especially as I was worried about my heart. It was a real effort and very uncomfortable. He said he would get me booked in to have my lung drained and to come back 2 weeks. My kids have all attended appointments with me, but my son Mark took me to Whiston hospital to get my lung drained. I felt so bad him hearing me go through it. It was the most excruciating pain I have ever had. It felt like a crowbar was trying to remove my ribs, even though the needle went in through my back. It was done in the outpatients, with the waiting room full as my appointment got moved from a ward. I am sure the whole ground floor heard me scream and swear. After this and X-ray was done and although they took 1.5 Litres, my lung was still half full, but once the pain eased I really did feel the benefit.
A week later, I returned to Clatterbridge hospital and signed the Chemotherapy agreement. I had an assessment on 5th June and my first of 4 chemo sessions on my grandsons 10th Birthday 11th June. I did get to see him though as I took him to school in the morning, as I was not sure how I would be after the treatment. Turns out I was okay for the first 2 days before side effects kicked in. I then felt and was sick for 4 or 5 days. I did get a call to see how I was going, and I questioned them about the treatment as when I asked in the clinic they just said it was correct what I was having. I was told I would get 4 treatment drugs, but only got 2 different treatments through the cannula, alongside a vitamin B injection and anti-sickness tablet. It turns out that the consultant who saw me to book me for a lung drain, didn’t think I would be up to it, and reduced the treatment to just Chemo. My next session was also reduced again because I had been sick and told them I was in bed for a few days. I said if I had needed to I could get up and do things, I just didn’t want to as I didn’t want to be sick. This didn’t matter, they still reduced it explaining that they only want to give treatment that I can live with in a good way. There is no point giving treatment that makes me too ill to continue with further treatment. I completely understand this, but I was worried that reducing treatment is also reducing the effects of the treatment.
I had my last Chemotherapy on 13th August. Until then, I always thought ringing the bell was when people where cured, but it's not. It's rang also at the end of your treatment, or different stages of treatment. so I was asked to ring the bell. I did ut as I felt so happy and positive it had worked well
I had a scan the week before my last treatment. When I went for the results a month later, as the secretary says it takes 3 weeks for the reporting to be done, I was told that some of the lesions on my spine had gone, but the main one was still about the same. I mean it was great that some had gone, but until then I didn’t know there was more than one on my spine. As this was positive, I asked what my prognosis now was and he said the same. I asked could I be referred to Christies, in case they had any trials or other options, as he said they wouldn’t carry on with treatment now as it hadn’t grown. I had asked this initially and was told they couldn’t until they had the markers back, yet still hadn’t been referred. He said that they would need something to go on, even though I had previous scans, and that it would be better after my next scan results.
The next scan then showed that nothing changed from that one. Again Ella said that I couldn’t have any treatment. I asked was it because of funding, and couldn’t believe she actually said yes, but then immediately said but if we give treatment it might sort of wake it up and it may start growing. So again I asked about Christies, and Ella said she would chase it up. I got a phone call from her a few weeks later to check how I was, and because I said I haven’t heard anything since being told it would be chased up, I was shouted at, and felt like I was back at school.
The last appointment I had was last Tuesday 10th December. I saw another consultant at Clatterbridge hospital to get the results of my last scan. It’s rare that you get to see the same consultant, as I have seen 6 different consultants just at the Clatterbridge clinic. They are a team and discuss each patient whist you are waiting to see who will see you. I feel this would be better if done before, so patients aren’t waiting as long as it’s a very anxious wait. I feel it would be even better if you had the same consultant each time. Anyway, he said that there was no change. It’s sort of gone to sleep and still say they don’t advise treatment, but will discuss option when it starts growing again, as he said it will definitely start to grow again at some point and I have the same prognosis. I asked about Christies again. He said they won’t do anything if it’s not growing.
I have asked every question I can. I asked can’t they cut some out and zap the rest? They said that as it’s in my lymph nodes if they did cut it out, the recovery would put me at risk and wouldn’t guarantee they would get it all, and the best option was treating my whole body with the tablets or Chemotherapy. Now they refuse treatment as it’s not changed, I asked Isn’t prevention better than cure? They explained that they can only do so many treatments and they need to hold them for when needed, and radiotherapy can only be done once in the same area.
I am so grateful for the care and treatment I have received so far. I have always had a great deal of faith and respect in our NHS. However, I am fighting for my life. I know they know what they are dealing with, but the way the talk and treat me, I feel they are just doing the basics to help me feel well for the remainder of my life. I want to be treated to help me survive not just to help me feel better whilst dying. I want to try anything and everything I can. I am also a little weary as remember I had to wait a while for treatment, whilst they were waiting for markers, my Dads treatment was discussed straight after diagnosis, as was King Charles. Why did I have to wait so long? Is it because of where I live? Are Merseyside NHS resources stretched to their limits, as I heard that it is the highest rate of cancer in Merseyside. Is this the reason they hold of treatment?
I have researched lots of other options but they are all so expensive. I got in touch with Antara Medicine, an outpatient cancer care clinic located in San Francisco, CA.after researching. They came back saying they could help me, and gave quite a lot of detail in the email about the types of tests and treatments they do. It all sounds much more advanced, but I have never been able to follow up on this due to the costs she outlined below:
Please visit our website and see Your Team at Anatara: https://www.anataramedicine.com/team.
The initial consultation would likely be with Dr. Ahvie Herskowitz (our Medical Director, he is an Integrative Medical Doctor) for a minimum of @ 60-90 min = ~$1,000-1,500.
And may also include one of our other doctors, either Tristin Wallace (Naturopathic Doctor Assistant) or Dr. Ann Lee (Functional Medicine, Medical Doctor) = @ 90 min ~ $1,000-$1,100.
Total Cost - $2,000-$2,100
As said as well as the costs she did explain a lot and attached brochures and other information. Due to the cost it just made me realise I had to stick with NHS, but was happy to do so once I got positive, and have been very hopeful. Yet now as said I feel like I will always be treated as terminal and that I am dying and not treated to try and beat this and help me to survive. They may be right in the way they are treating me, but I have to fight, I have to try everything. The reason I keep asking about Christies more now, is my dad has also been diagnosed with Blood Cancer. He was diagnosed and is under Christies hospital as he lives in Preston. They discussed treatment straight away, and my brother mentioned me and how our family has no luck, and the doctors said that we could go there if referred, for a 2nd opinion. I did not want to offend the doctors by saying I want a 2nd opinion, but there is the saying 2 pair of eyes is better than one, and they may have different resources available.
I have taken my life and family for granted, assuming they and I will always be here, and putting off things that I can do tomorrow so to speak. I can’t take things for granted any more. My kids have been booking things to do and places to go. I was in Edinburgh last week with our Mark, Chloe and kids. It was amazing spending time with them, as it is when Danielle and Poppy take me places, as it is when I spend time with Jamie and Connor too and my dad and brothers.
I ended up telling my dad a few months ago, but cannot help worrying if this is what caused is diagnosis of blood cancer. It’s made me realise that you never know what's around the corner. I need to really start making memories with them all together, and I need to try and get alternative treatment, I don’t want to just roll over and go with it. To see if anything else can give me a chance of survival. That’s why I have had the courage to ask for help. It’s so expensive trying to keep up with the remedies I have been told, especially as my sick pay ended months ago. So I am hoping if I can get the help I am begging for, I will be able to keep up the remedies, make some amazing memories, but also try and find a treatment that will work for me. I just want to be here for my amazing family, who I am extremely proud of, and want to continue being here for them.
If you have read all this, thank you so much for your time, I know I waffle a lot. My kids tell me I go around the world with a story, so sorry about that. Again, I feel so embarrassed asking, but if you can spare even just £1 it will be greatly appreciated. I will add updates as and when.
Kind Regards
Maria
