Well, I've had a couple of days at home now since my little holiday in Pilgrim Hospital. I went from a trolley in A&E to a trolley in an office (the Veno room we opted to call the Vino room and hoped for perhaps a nice glass of pink) in Clinical Decisions unit, to a gynae ward and finally, after one of my chemo nurses chased the hospital to ensure I was being cared for, transferred to the cancer ward where they know how to deal with neutropenia and PICC lines.
I think the only way to convey why I was so frightened and distraught, and I really do think those are the best words for how I felt for at least the first two days, is to explain exactly what I "discovered".
The entire time I've been having chemo this time I've suffered constipation, vomiting, general abdominal pain, very low pain and the usual pelvis and hip pain for which I'm using the Fentanyl patches. It started on day one of Evil Irene. I've not been constipated in well over 4 years, since before I became ill with cancer. It took me a while to notice. When you've got an internal J-pouch, or any type of coloanal join, you go to the loo more frequently and frequency is generally affected by what you put in your mouth. The nausea, inability to eat or drink, the vomiting - it sort of distracted me. With all that going on, reduced trips to the toilet are most welcome.
I was also, more distressingly leaking, I put it down to the chemo making some watery output, since it and all the other medication I'm on can all cause constipation/diarrhoea I dealt with it as best I could, with thick Tena Lady pads I had for my reversal for the expected urgency and liquid stools until things settled down. Obviously not their intended purpose, but essentially I needed some kind of nappy and was horribly conscious of the smell and that just put me off seeing anyone or leaving the house at all as things got worse.
By the third cycle of Irene I'd spent 3 weekends basically on the toilet. The pains would be spasms, like contractions, the pain all in the area of surgery, where my rectum used to be, making sitting, standing, walking all even harder on top of the usual pelvic pain (or was the just an extension of that pain?). Every 20 mins I'd have to rush to the toilet and try and pass something - having taken Senna as soon as I realised the problem. The pain was so bad I cried, I would spend every Friday/Saturday night and part of the day doing this as the Senna kicked my bowel into action but nothing would move for a day or so, sometimes it was so painful, I actually used the breathing they teach you for childbirth, it was that bad.
I was worn out, losing weight, unable to cook, eat or drink in that state and just hoping the Senna would work the more I took. Still there was leaking which frustrated the hell out of me - but I guessed that was just gravity. On Sunday 21st November the niggling thoughts that had been right at the back of my mind, hiding in a locked safe, at the bottom of a wardrobe hidden by long coats, suddenly came to the front and prompted me take a mirror to the toilet.
Nothing was coming out of where it should have been, somehow (I'd read of this happening in certain female cancers, so was aware, but never, never considered it could happen) my pouch was leaking into my womb, and as far as I knew into my pelvis. I felt sick, disgusted, horrified, terrified, dirty and a whole lot more. My son had already asked me to pick him up from his friend's so we could spend a few hours together so I cleaned myself up yet again and got dressed. We spent the time looking at the phone he really wanted for Christmas, and agreed he could have it but a second hand one (£450 new). He and his sister now have the phones they wanted early - I don't know what state I'll be in at Christmas so they've had them early while I was "well" enough to take in fully the looks on their faces and spent time with them figuring out the swanky new tech.
I sent Becky a text telling her I thought I'd need a stay in hospital, but not why and she came over to drive him home while I rang the cancer ward for advice and packed a bag. They told me to go to A&E and you know about some of the wonderful specimens of the health profession who not only reduced me to tears insisting I wasn't incurable, needed help getting dressed, should have asked exactly what date I'll die, but made me explain in detail to at least four of them exactly why I was there.
I struggled to admit it to myself and here they are making me say it over and over again after explaining my current palliative chemo they all asked "so, after everything we've been over, about your cancer, the pain and the fistula, and we know you're neutropenic and have a temperature, what has actually made you come to the hospital today?" I couldn't believe it. Neither could Becky. Who, in their sane mind, would consider passing faeces through THERE, was normal and not get to hospital ASAP? I began to question if it was even happening. Since nobody even examined me until I'd been there 2 days. The neutropenia, low blood pressure, infection and temperature took priority.
All the time I was thinking, if there's a hole in my pouch (basically my intestines chopped about to make a new sort of rectum and it's forcing itself into my womb, what if it's leaking everywhere, I know from my reversal how serious a leak is when I had a suspected one - the risk of death isn't low. Nobody seemed to care about this, they were only interested, rightly now I can see, in getting my white cell counts up.
I'd not slept for 2 nights and managed 3 hours on Monday night, every conversation was riddled with fear. A registrar surgeon came to see me on Tuesday morning - he also reduced me to tears by refusing to answer "once I'm over the infection, and white cells are OK, is it likely I'll have to go home and wait for an operation left in "THIS" state?", insisting the surgery I needed I HAD to understand was very risky. I know, I had my entire contents cut out, chopped up and put back in 3.5 years ago. The nurses, all women, all understood my anguish, why I needed this to stop, why I needed answers, a plan of action. The sister on the ward followed the surgeon out and he apparently "backed down a lot" after she spoke to him. He was supposed to talk to his boss then return in the afternoon. I had decided this man was having NOTHING to do with my surgery or my care.
My wonderful surgeon Mr A came in the afternoon instead. He was on holiday - I knew this, but still he came in to see me with 2 of his team. He basically came in and kicked ass. Told me what they would do - a permanent stoma of some sort, whichever was possible once I was opened up. He had a surgeon who he said was good to operate in his place and his team would continue to check on me during my stay.
He is Indian I'm sure from his name. As I lean more towards Ayurvedic thinking since my re-diagnosis I find he is the only person who can say "We cannot control some things Lisa, we have to just accept that this is the path we're on and be strong". He said it quietly with his hand on mine, as he always does when he tells me bad news, with tears rolling down my face. They weren't tears of frustration or fear now he was in charge, they were tears of relief. Things improved after his visit. His chosen surgeon also came to see me, he's lovely too. The trust I have in Mr A is transferable to anyone he chooses to care for me. He explained the best solution would be a permanent colostomy at the sigmoid - usual place. However the scarring I will have, and the fact I have no sigmoid colon left means a stoma down the left side is not feasible. A high stoma formed from my transverse colon, but still a loop - where both ends of the cut 'tube' are brought through forming a huge bulge (I cried more when I saw just how big these are) is best. Output will be less solid but I will absorb more fluid than with another ileostomy as I had before. Sally one of the colorectal nurses has marked me up in 3 places - though we know there are only 2. He also said he will try to make a small cut, but is almost certain he'll need to open up the 10 inch scar - which I've had a pretty tattoo over since by way of saying "no need for more surgery here, I'm safe from cancer".
I had 2 sorts of 4 hourly antibiotics in my line, IV fluids for all but the last 2 days. I had jabs in my belly to stop clotting, surgical stockings, jabs in my belly of GCSF (to stimulate my bone marrow to make white cells).
My neutraphils were 1.5 the day before my 3rd dose of Irene, 0.9 on admission on Sunday night, 0.8 on the Monday - below 0.5 and you're in dangerous territory, an infection suddenly has an element of fatality.
Dr Tom, my onco came to see me with Kit Kats as a peace offering, which I declined politely. They are all shocked at this latest development. He has a theory there was cancer at the join, Irene killed the cancer, or shrunk it, weakening the area and the fistula formed. Or, the fistula was just because radiation causes them and scar tissue and sodding unexplained pelvic pain (finally someone is considering my explanation?). He mentioned we might try some different drugs which might mean I could reduce the dose of Fentanyl since I hate the effects so much and really, I will need the hard drugs further down the line.
It's a lot to take in. They cannot do anything about my pelvic organs, surgery is too risky, especially with the high possibility of cancer in there as well. They hope the fistula will close itself once nothing is interfering with it, he mentioned a fistula plug, but again - it's really a case of wait and see. I asked Sally, despite the fact that nobody will ever want me now, not now I have an invisible "use by sometime quite soon" label somewhere, if I would ever be able to have sex again. There's no definite answer, but perhaps. If enough care is taken, if the hole isn't too big (it's over 1cm in diameter, possibly 2cm).
I weighed 75 kg earlier this year, around when the pain started in April, I now weigh under 60kg. I lost the weight so fast, my skin is looser, I can even see it in my face. My muscle tone is gone, my calves are wobbly when they were solid from running. My hair is falling out, half gone already but slowed down now I'm having some time off Irene. I am weak and get out of breath easily. Often I am in pain walking very short distances. I don't have the energy to try and do anything with my hair or even bother with concealer under my eyes. I wear clothes but find it hard to care what. I'm incontinent. I am nearly 4 years post menopause and my skin is permanently dry. I know if I make an effort I can look a bit like me, but the changes have come so fast I don't recognise myself in the mirror. So why do I care if I never have a sex life again, I know I can't have a relationship? I don't think I do really, but I care that I have no choice, no control and I agreed to be discharged on Tuesday so I could come home and get on with the process of accepting.
People talk about fighting cancer, but I can't fight it. I am accepting it, I'm living with it, I'm determined not to let each new horror beat me. I still eat a vegan diet, I have made the very rare concession of tuna, salmon or crab for easy protein during chemo. I've had to make a concession on wheat - eating ordinary bread in hospital and if people buy me groceries that aren't quite on my list I'll take them regardless. I can't handle wheat grass unless it's in the cocktail Holland and Barrett sell for over £3 a bottle. Mike supplied a couple of bottles last week which made me feel I was doing something at least. I'm sticking to my plan as far as is practical and my taste allows. Cucumber makes me feel ill still - but I managed to eat some yesterday but I used to have a half or whole in my green drink every day. I'm not sure if I'll be able to get back to juicing but if it happens it does, I'm not forcing anything. Whatever I do has to be relatively easy and cause me no stress. I'll get back to my original plan eventually, I just need to go with the flow for the time being.
I'm going to continue this in another post, just to break it up a bit.
For those who don't understand the surgery (why would you unless you've had it?) here is a very useful link:
Weekend Reading, 2.18.18
1 day ago