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| Photographic evidence of 2 bored people in a waiting room |
A little aside which might amuse you is that back in November ‘23 we discovered that I’m sensitive to a new brand of IV steroid that the buyers in the NHS have bought. “How do we know that?” I hear absolutely nobody asking, but as you know, I like to over share. Before the immunotherapy drug is administered, I have a lil’ pre-med cocktail of Steroids, Antihistamine, and Paracetamol to prevent a reaction. The steroid used thus for the past 18 months of treatment has been a powder which the nurses mix themselves with saline and then administer - happy days. In the interest of patient safety though the buying dept have bought a ready mixed version which is supposed to be quicker to administer as it is typically given to stop a reaction once you’re having one. Fine, no problem. Although there was a huge burning, itching problem which happens to only the female of the species for 20-30 seconds but feels like a figging eternity. MY FOOF WAS ON FIRE! I leapt up from the chemo chair and was frantically dancing about crossing my legs simultaneously wanting to pull my clothes off and scratch the skin from my bones, whilst still looking to maintain any sense of dignity, and not like a dog with undercarriage rabies. It was like a bucket of fire ants tipped into my knickers, I only had to suffer the indignity of this happening once more before they believed it was the effect of the steroids. Not fun! It has since been noted, and I understand I wasn’t the only sufferer of Indcendrio Pantitis. I believe a protocol has been introduced whereby they still use the ready mix stuff, but slowly, and perhaps with added saline - defeating the object, but hey, something had to be done. You can’t be having a reaction, when the drug they give you to counteract it, could give you ‘that’ reaction! I mean… really. This is why it's important to test drugs on men AND women.
At the end of November ‘23 I had scans and was told that the Nivolomab had stopped working, and that the cancer looked like it was progressing into the track that had been left from the drain for the abscess next to the perforation. Fuck. What do I do now? I had already been told I was out of treatment options and that I’m not suitable for clinical trials for 2 reasons. One, because I don’t have enough cancer, it’s still in its primary site and hasn’t spread to a different organ, and two, I still have open wounds. To make matters worse, I had this news on my own. I had gone to Velindre ‘just for bloods’, by myself as I have done many times previously. I was told by the receptionist that my doctor wanted to see me in person. She was incredibly kind and empathetic and the colorectal nurse specialist came in to offer support too. But I’d have quite liked a heads up that someone should be there with me. I was a mess, tears, snot bubbles, the works. I then had to break that news to David and my mum. We decided at that point not to tell my son, as frankly the prognosis hadn’t changed really, he knows I’m not going to get better and why remind him and sack off Christmas. We all deserved a bloody fantastic Christmas.
It was a week or so later at my next meeting with the Oncologist that they suggested a final 3rd line treatment. A drug known by its brand name Lonsurf, as the proper name looks like someone has fallen asleep at their desk and hit their head on the keyboard. They’ve previously ruled this drug out, as it’s a similar type of chemo to one I’ve had before, and my tumour has proved to be chemo resistant - little fucker. However, there have been trials on other types of Bowel Cancer where Lonsurf has been used in conjunction with a Targeted Treatment called Avastin and shown positive results. It is only a life prolonging treatment, still not curative, but could give me more time. 3-12 months extra time, we’re into small time frames here.
Now this part is full of coulds, mights and maybes, because they actually don’t know if it will work or not on my type of tumour. My tumour type is rare and there are simply no clinical trials to look at. There’s anecdotal evidence, but nothing scientific. Another sticking point is that Avastin is not yet licensed for my type of tumour so wouldn’t be funded by the NHS. My Oncologist would have to present my case to 4 different boards to get the funding from the Welsh Assembly Government. My fate was in the hands of bean counters, strangers. How will they know if I am worth spending the money on? Is it worth going ahead with the treatment if I do get funding? Will I get quality over quantity of time? Are the side effects worth it? A lot of big questions. This was all really overwhelming, not just for me, but for everyone. I felt like I’d been handed a death sentence again. The hammer could fall at any moment on my health and I had to wait for a month for the decision. It wouldn’t be back until after Christmas. We decided to make it a good one.
On 27th December ‘23, we had the good news, I think, that the funding had been approved. I had the go ahead to have the Avastin along with the Lonsurf. This is a real Hail Mary treatment, there is nothing else after this. After many soul searching conversations with my nearest and dearest, the only conclusion was that the decision was mine, and mine alone. People could tell me what they think they would do, people could tell me they would support whichever decision I made. The doctors would support whichever decision I made, but ultimately the decision was mine. Shit a brick, what a fucking decision. I decided to give it a go, with the caveat that if I get really poorly, I’ll stop treatment and go for quality time over quantity of time left. Treatment would begin towards the end of January ‘24.
Jack was due to go on a school trip the day of my infusion, we felt as though we should sit him down beforehand to tell him I’d be starting a new treatment in case anything happened while he was in London. It was another one of those conversations telling my son that his mum was not going to get better, and that the new medicine was designed to hopefully give us more time, but that it might not be very much time. I’m sorry if this is hard to read, it’s hard to write. It was hard to say. What I hope he understood from our talk was just how much I love him, and will do anything in my earthly power to stick around for as long as possible and be there for him. He’s everything. It’s so unfair that he’s having to deal with this at such a young age. But nothing is fair and a lot is unjust.
I faced the new treatment head on as I usually do, with a ‘lets do this’ kind of mentality. But I was very nervous about the initial Avastin infusion, I have had reactions to treatment in the past and that scares the bejeezus out of me. It doesn’t help that they have to go through all the side effects with you and the numerous ways in which the drugs will fuck you up, along side hopefully fucking up the cancer. If someone could please invent a cure for cancer that doesn’t fuck you up, a lot of people, including me, would be very grateful. The infusion was ok - phew, then someone said that if there was a reaction, you’re more likely to react on the 2nd one - oh naff off! Mum came with me to the infusion, it’s nice to have some company, although doing a crossword with my mum is like an end of term exam, pens ready, eyes down - GO! it would also help if we could spell! Picked up the Lonsurf chemo tablets from the pharmacy and we were good to go, with strict instructions that if anything changes or is different, then I was to phone the treatment helpline.
The first couple of days on the chemo tablets weren’t too bad, it was only after a few days that the nausea kicked in. The district nurse had popped in to change my Picc Line dressing and noted that my obs weren’t great. I promptly threw up. I called the treatment hotline and my anti sickness meds were switched up and I began to feel a lot better. I could eat again at least. I’ll describe it as functional eating, not eating to enjoy the food, but eating because you know you have to. My taste buds went a bit screwy so that didn’t help.
At the end of the 10 days we were done, time to recover. I had the audacity to think that it wasn’t so bad after all and I could definitely do this! WRONG! Cue Galloping Shits. After a day of those cue High Temperature. David dropped me off at Velindre at about 11pm and I headed up to the ward. Please don’t clutch your pearls and gasp that he didn’t come in with me. We both know the drill for this now. Get to Velindre, bloods and blood cultures, samples of all bodily fluids, nose and groin swabs for covid/ MRSA, antibiotics, observations - your blood pressure’s low, fluids, despite my BP being NFE - Normal for Elaine, bed and then woken at 4 hourly intervals for more observations. I really don’t need David to sit and watch me have all this done. That being said, I do like company if I have to go to A&E, I’ve a tendency to end up in A&E windowless cupboards which can get a bit lonely and boring.
I was given antibiotics and loperimide to try and bung me up, but I was still having diarrhoea. The doctors decided on an injection of something to try and stop the torrent, but as always it didn’t go quite as planned. The injection made me vomit. We were going to need an old priest and a young priest at this rate. There was a little blood in the vomit so I was packed off to have a CT scan to check to see if anything more sinister was going on.
The next morning, a young doctor popped her head around the door after I’d had the scan and let me know that my Oncologist wanted to see me and would I like to have my husband with me when I did? Welp! I mean that’s never a good sign is it? I called David and asked him to come to the hospital and waited for the axe to drop.
But it didn’t, the scan showed, thank goodness, no bleeding or spread or perforation, or enlarged collection of goo, just a little colitis - inflammation. And, for the very first time since my diagnosis, we were told that my tumour had shrunk a bit. Y’what now? Say again? Pardon me? The. Tumour. Had. Shrunk.
I cried and lost the ability to ask any sensible questions. I know now what questions I should have asked and have since asked those questions - still waiting on a few answers, so must chase those up. This was the first and only time I’ve ever had truly positive news on the tumour, it’s a very strange feeling. I feel I must manage expectations here. We’re still not looking at a curative approach, we’re still very much in a life prolonging position. For the moment though, we’ve got more time.
Time to be normal, time to nag about homework, time to ponder about what to have for dinner, time to love and be loved. Time is most precious. I think it’s important to let you know I don’t have a bucket list. I don’t have an overriding desire to fill my time with daredevil experiences or once in a lifetime adventures. It would be nice to go on holiday, but I still have open wounds and I’m currently still receiving active treatment so I’ll take quality moments over those everyday of the week. Don’t get me started on #makingbastardmemories! Every day I’m not dead is for memories. Even if it’s chicken dancing, and clucking around the kitchen having a laugh and being stupid. Favourite memories will come from unprompted, impromptu moments. Enjoy, savour and devour them.
Back to the hospital stay! I was given some codeine which seemed to help the diarrhoea, and the temperature had gone so I was sent home.
Only for my temperature to spike again after a couple of days and back to Velindre. Again, late at night, I drove myself as someone needed to stay with Jack - I didn’t want him to think he’d been abandoned in the middle of the night. I strolled onto the ward, again, suitcase rattling behind me, bid a cheery hello to the nurses and got directed to my room. Repeat same procedure as above.
After a couple of days, bodily fluids had been cultured (Moz-fart?) and I was showing signs of having C-Diff. Not nice, but very treatable. C-Diff can be common with people who have previously been on lots of antibiotics and people who have an Ileostomy. Check, and check to both those things, throw into the mix I have no immune system because of chemo and BOOM perfect storm. My antibiotics were changed to a specific one for C-diff and I started to improve. After 3 clear tests I was sent home, and thankfully well enough to enjoy a trip to the theatre to watch ‘Murder in the Dark’, very good and would recommend, if you get the chance to go.
During my hospital stay, I managed to inadvertently join the nurses book club. I had finished the book I was reading and thought I’d be nice and asked the nurse if anyone on the ward would like the book since I had finished it. But instead of it going to a patient (probably for the best because of the C-diff) the very eager ward sister swapped my book for hers! She was due to fly back home to visit family and wanted something new to read, and by happy chance, she had just finished her book, so I got a new book - Happy Days! Hospital stays are made better by the little wins, and this was one of those. Always look for those silver linings and moments that make things a bit brighter in what can otherwise be a quite gloomy scene.
It was decided I should carry on with treatment, but at 80% of the dose to try and mitigate some of the side effects and to prevent a repeat of the C-diff episode. Round 2 was ‘easier’ in this respect and nothing untoward happened. Relief! Init nice to be boring?!
Then my hair started falling out. Ha! I knew there’d be something. I had a CT scan on my birthday at the end of March and it showed that there had been no new growth, but not any more shrinkage either. There had been a reduction in the inflammation of my bowel, so that was a good sign. Back in November, I didn’t think I’d live long enough to make it to my birthday, I genuinely thought my marker was up. I’m very happy to report that not only did I make it to my Birthday, but I made it to Jack’s too! Having spent his last birthday in hospital, it was really important for me to be present for his 15th. 15!
Round 3 of chemo went ok, however a couple of days after Jack’s birthday it all went a bit Pete Tong. Hello A&E! I had loose stools again and my temperature was on the rise. FFS the last thing I needed was another bout of C-diff. I’d called Velindre, but their ward was full, so I duly trotted off to RGH. To be fair, I was triaged quickly, but spent the night in a cupboard. I was whacked onto 3 broad spectrum antibiotics while they did the requisite tests. RGH is a bigger hospital without a specific cancer specialist, so I felt as though things took much longer to get resolved than they should have. Having ruled out C-diff,I had to actively advocate for myself, and ask for a CT scan to check the site of my previous collection to make sure that it wasn’t the source of the infection as it has been in the past. I had to request to see the Velindre Liaison Nurse, and I had to check and chase a number of other things - getting dressings changed etc. I’d gone into Office Manager mode, they might not let me back in! I was very polite about things, but refused to be fobbed off. I also try to get washed and dressed in normal clothes during the day whenever I’m in hospital. It helps shake off that ‘patient’ mentality, and I think it makes the doctors see the person rather than the pyjamas.
The posh name for what I had this time is Neutropenic Sepsis. In laymans terms, Fuck all immune system, Fucking high temperature. Not the greatest. Having stabilised, they then let me home. I mean, I can take antibiotics here and avoid people here just as well as I can in a hospital. If not better. My Neutrophils are still really low, 0.7 at last count, where they should be between 2.5-7.5 #findphil
So that’s me and you up to date! It is really shitty that I keep landing up in hospital and I have lots of new questions for my oncologist. But I have to look for the good, re-frame any negative thoughts into good ones. Back in December I thought I was a dead woman walking. Firstly told there was no treatment, then told there was one but they didn’t know if it would work. I thought Christmas would be my last and that I wouldn’t live long enough to see my birthday or Jack’s. So now I’m living birthday to birthday, hoping, wishing, manifesting for more time and treasuring the time I get. I will never take time for granted.
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