It has been over six months since I last wrote a blog. The reasons why will become apparent if you read on. My apologies to anyone who has been in touch and I haven’t responded, the same reasons apply! Your contact has been much appreciated. I am slowly working through messages and will be in touch.
Let’s rewind to May 2018. It was my birthday and I took the above photo on the way out for a family meal at our local and infamous Italian restaurant, Rico’s. The problem was, I could hardly eat anything as my abdomen was distended and I felt very full very quickly. I was also extraordinarily tired. The following week was half term and we went away glamping to Norfolk. A fantastic campsite for anyone interested! https://www.swallowtailholidays.co.uk
I remained knackered and as a result, struggled to enjoy the holiday. I was also waking up during the night with sweats and chest/back pain, having to take extra oral morphine. Not a good look, eh.
Fast forward to the end of June and the situation had deteriorated significantly. I felt like I was dying…. Probably because I was. The night sweats had become “all day and night sweats”, the tiredness had become an inability to get off the sofa unless I really pushed myself, and I fell asleep frequently. I had lost lots of weight and my skin was hanging off me. There were horrible symptoms too, like an increased gag reflex on taking tablets or cleaning my teeth, sometimes making me vomit. I said to Martin that I felt like I needed someone to look after me, and I was increasingly unable to do simple things like make a meal. I stopped driving as it felt unsafe, and I stopped doing my beloved Pilates classes. I stopped reading as I couldn’t concentrate, and I stopped knitting. I stopped using social media. I stopped having a shower and wearing makeup. It is at this point that my in built, lifelong, taken for granted, conviction changed from “I CAN!!!” to “I can’t“. I do have some happy memories of this time though, time spent together with my family, watching World Cup Football!!
Because I felt so awful, I ended up on the Oncology Assessment Unit. My resting pulse rate was around 125, and I had raised inflammatory markers, but wasn’t septic. Nothing else was found. The next morning I was back up at the Leeds Cancer Centre for radiotherapy, which had been started because of the pain. Following this I was meeting a friend Vicky, with a history of cancer herself. You can see her blog here. http://carryoncancer.blogspot.com
On meeting her, I just burst into tears, explaining how awful I felt. Thankfully for me, she took control which was exactly what I needed!! She turned around and took me back up to the hospital, back to the Assessment Unit. This time, I had a CT scan (thank you again Alison Young) the results of which were enormously scary. Significant disease progression of the right sided disease. Mediastinal disease. Peritoneal disease. Metastasis in my left lung. Enlarged lymph nodes everywhere. No wonder I felt so bloody awful!!!!!
I had an appointment with my consultant the next day. Obviously, the immunotherapy wasn’t working and we needed a new plan. The only option was to switch to further platinum based chemotherapy. I was told that there was only a 10% chance that this could help, and there was a similar chance that it could make the situation worse (i.e. kill me). The likelihood was that it wouldn’t really change things. Having no further treatment was also something we discussed. With the way I was feeling, I could have taken this option, but my determination, albeit flagging determination, kicked in, supported by a “lets’s do this” attitude from Martin.
I started chemotherapy with Carboplatin and Gemcitabine two days later. I had already been referred to the Palliative Care Team at St Gemma’s Hospice, and the District Nurses.
Quite quickly I felt an improvement. The sweats improved and I was less fatigued.
Another problem was developing though. Anxiety. It reared it’s ugly head so quickly. I was taken completely unawares until was right in the middle of it’s grip, smothered by it. Rendered completely incapable. The “I can’t” voice in my head persisted, became louder and more repetitive. I would sit and wring my hands, rub my face and head, stand up and then sit down again over and over. Minutes and sometimes longer would pass with me staring into space. I ruminated over ridiculous things. I couldn’t sleep. I hated myself and my life, what I had become. An incapable individual. I knew that this was so wrong; I was at the end of my life and should be making the most of the time I had left, but I couldn’t.
One morning, after a particularly disturbed night, Martin took one look at me and said “Ring the GP”. I felt very unsettled by the way he had looked at me and realised that I had to do something urgently. Thankfully, one of the GPs rang back within an hour and was absolutely great with me. He suggested starting medication (which I was glad about and ready to accept). He suggested Mirtazepine (which I was glad about too, because it also helps with sleep and appetite, and I was hoping for this). He also referred me to the Young Persons Support Team at St Gemma’s Hospice as a lot of my anxiety was around the boys and how we would get through the summer holidays with my deteriorating health.
The anxiety symptoms settled within a few weeks and I was so grateful for this. However, what I didn’t anticipate was the depression that followed. I felt like I was staring into a big black hole. Each day seemed to stretch out forever in front of me and I didn’t know how I was going to get through it. Physically I should have been able to do things like make a meal, but mentally I could not. I did not have the motivation. It was as though I needed to retrain my brain to do all of these things. I couldn’t understand how I had enjoyed things before, how I had been happy! What did I used to do during the day to pass the time? I still couldn’t concentrate enough to read, so just sat there feeling really really horrible and sorry for myself.
Thankfully things did improve. And I think, luckily for me, fairly quickly. At the end of the summer holiday, we managed to get away to Inverness to stay with Martin’s parents. The combination of time with my family, time on the beach and being “a bit looked after”, worked wonders. By the time we arrived home, I was feeling much better.
I have now completed 5 cycles of chemotherapy and despite some niggling concerns, I am vastly improved as far as the mesothelioma goes. I had a scan after cycle 3 which confirmed that there had been shrinkage of tumours. Hallelujah. Mentally, I am almost back to “normal”, but have lost so much confidence. I can’t imagine doing things like getting on a train to London by myself, something that used to be part and parcel of my everyday life.
What I haven’t mentioned is that whilst all this was going on, we were having an extension built on the back of the house. I know that this didn’t help the situation!!
So, here I am. At one point I thought I would never be able to write a blog again, so it’s quite a big deal to me that I have managed it. Looking ahead with hope again. All being well I will complete Cycle 6 of chemo and I’m already looking at clinical trials (again). I am excited to think that I will probably see the boys birthdays in December and hopefully another Christmas!!! Grateful for our NHS and for having been given another gift of life.
This blog is dedicated to Team Portman. Goodness!! I feel so emotional thinking of how you supported me and the family at this difficult time, and continue to do so. Thank you for the child care, the meals on wheels, the cups of tea, the supportive texts, being a listening ear, just letting me spend time with you when I needed to get out of the house. Thank you Jacquie Butterworth for masterminding the Team Portman calendar (not to mention being an all round star). Extra special thanks go to Anna Crossley for organising the meals on wheels, but in particular for seeing me through some of my darkest days. Without you babe, not sure what state I’d be in. Thank you.