Get the tissues out, this blog won't be a breeze to read. A different one for me but I think I deserve to let some steam out.
Recently it has been a hell of a ride. As much as I want to keep my blogs easy and breezy, right now I feel like screaming F***K YOU CANCER every minute of every day. For many different reasons. So here we go…
My immunotherapy trial doesn’t work, my body is too weak to continue. It sucks to even type those words. It was my very last opportunity for more time and it has been taken away from me, I feel like I haven't even had a fair chance to give it a proper go because " the disease is developing so quickly" as my handsome oncologist told me. I have exhausted every possible active treatment option western medicine has to offer- chemotherapy, radiotherapy, immunotherapy, etc And it’s not a question of having to look for resources, everything that is available out there suitable for my type of cancer has been offered to me by the NHS. Unfortunately, I am dealing with a very rare and very aggressive type of cancer and the reality is there is no stopping it. Most people battle with cancer for years, for better or worst they go through cycles ( months ) of repeated treatments and they live with terminal cancer for quite some time. I was diagnosed in July 2022, became terminal with metastasis to other organs in December 2022. Today is 26th March 2023. Last week when I got the news that my immunotherapy trial has stopped and my scan results were not the greatest to say the least, I was given a prognosis of “roughly a couple of months” That’s right! What a blooming bastard.
First I started writing this blog from a hospice a couple of weeks ago before all this huh hah started. A hospice in Norwich called Priscilla Bacon Lodge or in short, I will call it PBL, although one of my friends quite rightly pointed out the brilliant combination of names 👵🏼🥓 Purely the word hospice usually has a lot of stigmas attached to it. I used to imagine breathing machines and a place where people go to die essentially. A place where you never come back from. However, I have to say I was proven wrong! I remember the first time Thomas and I had a meeting with the palliative care team at PBL - on Valentine's day out of all, of course! Why wouldn't it be?! I was a ball of nerves. I had no idea what palliative care is. But then who does unless you have to? Essentially once you are diagnosed with an incurable disease you are referred to a local palliative care team who looks after you alongside your hospital (oncology in my case) team and makes sure your pain management plan is in place, you are comfortable and not in pain, you have a therapist if needed, physio etc there is a lot of talk about the quality of life over quantity which may sound surreal but at the end of the day when your body is in pain trust me you don’t want to mess around! Anyway just going to the hospice for an appointment scared me, let alone staying there. My lovely dark-humoured husband called it “the dead centre of town” and he wasn’t wrong to be fair! Anyway, we met with a lovely, gentle and incredibly kind Dr Holland who made us feel at ease immediately, asked millions of questions and also really listened to what I had to say. We talked at length about my wishes and he explained what they can provide in terms of care now that I have been referred to them I’m almost part of a very special family and he wasn’t wrong. It felt surreal talking about all of this since I was still very much hoping I will come out on the other end of this but that's where the two worlds collide. Having to look at the scans, listen to the doctors, listen to your prognosis and be realistic about the situation, not completely and blindly ignoring it and at the same time still hoping and believing that things will be ok?! It's a tough one, isn't it?
A few weeks later and it's still exactly how I felt even though at the time I didn't know my immunotherapy wasn't working, I still had a lot of faith and hope in it, in something! One day the same Dr Holland we saw at our PBL appointment kindly came to visit me at home to check up on me as I was in quite a lot of pain with very strange symptoms. He came to our house and after examining me said "Just throwing it out there... you can always come to the hospice for some time so we can keep an eye on you and get to the bottom of this. You are completely entitled to say no but just so you know it's an option." I pretty much laughed at his face, bless him. I had coffee meet-ups lined up with friends and all sorts of things! Are you kidding me? Me going to the hospice? Now? I mean, I'm not dying? Not just yet anyway, Christ! Well, on the next day, I got so bad we had to call an ambulance and they took me to the hospice. Take that, Veronika for laughing at the lovely doctor. It wasn't even an option. I had to go, otherwise, I don't think I would have made it. I got to the hospice with Thomas, he and my lovely Dad were by my side every single day. A couple of days later I was much better, I could open my eyes for the first time. The staff here are absolutely magic. Pure magic! You have to be a certain type of a person to work here as it can’t be an easy job, it must be highly emotionally draining. But also I just can’t get over the fact of how caring everyone is. I have already made friends with most of the nurses, and definitely with the chatty ones! Once a lovely nurse came to hook me up with my antibiotic drip and half an hour later when it was due to finish she was still there chatting away to me, well with me! I have been millions of times at various hospitals so far and I’ve never felt like this before. For whatever reason, the care at the hospice is very different. Don’t get me wrong the doctors and the nurses at the hospitals are doing their absolute best, but they are very stretched and have to quickly move on to the next patient. Here at PBL let’s just say the clientele is not in a rush so everyone can take a bit more time! Joke aside, I’ve never felt more looked after in my life even after I gave birth to both of my boys. Also my hat off to consultant Dr Sarah Gough, she managed to sort out one of the most mysterious puzzles that were my symptoms and delivered some pretty bad news in a very gentle way. That calls for a very special superpower only women can have. Towards the end of my stay, I had to go to the hospital for a CT Scan to pinpoint what was going on. I honestly couldn't wait to go back to the hospice. Nobody even made me a cup of tea there all day, everyone is running around so busy. Towards the end of the day, we received the results of the scan and Thomas and I found ourselves in one of those surreal meetings just like in films where it's all very dramatic with music in the background. There was no music, and it wasn't particularly dramatic, as it wasn't unexpected. The news was " we are very sorry, there is nothing we can do anymore. The cancer has spread to yet another organ" Also if that's not enough bad news, essentially 80% of people get no side effects from immunotherapy and 20% of people get very severe side effects and end up in a hospital ward. Well, if you have read my blogs guess which bracket I fall into? That's right, I got all the blooming side effects and they made me so sick that we had to call an ambulance that day and stayed at the hospice for a week! Another infusion of immunotherapy and it might be life threatening.
I got back to the hospice after the scan results. My consultant, Dr Sarah Gough from the hospice has already been in touch with the oncologist at the hospital and knew exactly what the results were. They have proven her theory right that sadly it was the cancer spreading and immunotherapy side effects. As much as I was hoping it would be " just an infection or something ?" ... it wasn't. She briefed all the nurses and the whole staff back at PBL about what has happened at the hospital so when I got back all of them gave me the biggest hugs. They hugged me so tight, told me they heard the news and they were genuinely heartbroken.They all said how close they grew to me and how life is cruel. It really is. Also, an article in a local newspaper was coming out the day after about me, my cancer journey and my life insurance blog post, which seem to have caught a lot of attention. So they were saying how much they were looking forward to reading it and how much they thought of me. I'm not crying, you are!
I went home the next day, I was feeling pretty much ok. I didn't need any more IV antibiotics so it was decided, quite rightly to get me home as soon as possible! Bittersweet to hear the words "so you can spend as much as possible time with your lovely boys"
This is my path, if I choose it or not it happens anyway. If I decide to believe in it, it happens anyway. If I ignore it and blindly try to pretend it's not happening, it's still there. So without a choice or not, I am following it and we will see where it goes. In the meantime hope, hope, hope. There is no stopping me till there is no more. Today I'm launching my GUARDI spring collection which I'm sure will raise even more funds for The Big C! Go check it out on my Instagram or www.guardiworld.com It is also our wedding anniversary today, 7 years! Apparently copper is the gift of the year and I've prepared something very special to mark the occasion. I'm a doer, I'm an active person and I will find little ways of being myself!
Love, V
Part II to continue...