But it has to be quality

So, where was I?

The day after the tantrum to end all tantrums, I asked the palliative care team to make me their first point of call. The duly turned up in less than an hour, with the doctor is tow, and I told him that I had been laying there for days on end with worsening cancer, and basically no pain relief at all. That they were giving me long acting meds that were delivering into my ileostomy bag in a few minutes and not being absorbed at all. I complained about the tiny amount of meds that they would give me in the hospital, compared to what the district nurses were prepared to deliver at home to get me out of pain, and if nothing improved, I WAS going home. The sprung into action immediately, doubling the steroid dose I was on, saying that would be the most helpful, as that would reduce the inflammation that was pushing my liver tumour against the nerves. He then prescribed a fentanyl patch, absorbed through the skin, not through the stomach, and I realised I finally had people who knew what they were talking about. Doubling the steroid provided almost instant relief.

Not long after, the liver team came around and said that my oncologist had said that if I agreed to remain in the hospital for monitoring afterwards the next day, I could start treatment THE NEXT DAY. I of course agreed immediately. He wanted to see me that afternoon, so my sister came and broke me out of hospital and we pottered up to the next hospital where his rooms were.

I thought I was prepared, you know? I have always known that this treatment provides my last proven treatment for bowel cancer that works (for some people – same as all other treatments). I was always frightened of this day, but my eyes were wide open, he could say nothing that would surprise or shatter me, I had been anticipating this days for years, but anticipating nothing but this day for the last few agonising days laying in that hospital bed.

Nothing can prepare you.

He was his usual calm self, as he had been every other time a treatment that had been working for me failed me. But the air was heavy this time. He looked at me and said that I looked yellow, but otherwise probably better than he expected, and as long as I didn’t spike another fever between then and the next day, I could have treatment. He rang the chemo unit and booked me in, rang the oncologists at the hospital, rang the liver team, ticked all the boxes – and then he turned to me.

“Let’s just crack on with this then Julia. I think it has a good chance of working, you have responded well to everything else.” And then….”this HAS to work Julia. It HAS to. If it doesn’t, it’s big trouble, you know that, don’t you?” I said I did.

And then, I begged him…”but Ben, it has to be quality. It can’t be this. My face has to feel what it is like to stretch with joy again. I have to know another day when I am not afraid. Maybe even a few hours.” I held up the Gucci bag full of very non joyous bile. “This has to go. There is no quality with this, you know how I feel about carrying things around with me, with leads and drains coming out of me. There is no joy with this.” He understood this, and said he really did think we had a crack at quality again, though then he saddened me with his honesty, with things you can’t unhear and said that the surgeon that had had a look at my liver the week before said that he thought the cancer stricture was too tight, the liver too inflammed and that the liver would never be able to be stented. However, he said if it could, I would drain quicker, get better 4 times as fast and we would be on our way. He said that it would break both of our hearts if there was this treatment out there and we knew it could work and we didn’t try it.

More heavy air. He said something to me that he has never said before. “Is there anything you want to know from me this time? Do you want to know what to expect if the treatment doesn’t work? What comes next?” I said no, I did not, but did ask a simple question “if it doesn’t…it will be…..soon”. He said yes, soon.

My sister dropped me back at the hospital and I didn’t go back to the ward straight away, I went down to the cafeteria, where I know everyone (all the ladies that work there Gaz has been friends with for like 50 years, since the school days, and they all care for me very much), I knew they would look after me. The first thing I did was burst into tears when I saw a mother having a simple milkshake with her teenage daughter. It was so fucking unfair. I just wanted to be able to have a milkshake with MY nearly teenage daughter. Was life ever so simple.

Everyone rallied around me, hugs, coffee. I cried and said I thought I was prepared. I thought nothing else could surprise me or upset me. Surely I was bullet proof by now. But I wasn’t, I was absolutely haunted, wandering around outside my own body. I knew the kids were coming in soon, and I just wanted them so badly, but how the fuck could I look at them knowing that I might have only weeks or short months on this earth with them. How the fuck do you look at your children, the most precious things in the world, and imagine them without a mother? Why? Why? WHY. But there is no use asking. The universe had provided no answers before, it wasn’t going to start now.

I knew I had to pull myself together, stop crying, get ready for the arrival of Gaz and my babies. Hey, we still had a chance. I could do this. I went back to the ward and decided to take a shower. Some time during this, the cannula fell out, and it was like a crime scene in there, due to the double blood thinners I was taking to deal with the new blood clot in the liver. I couldn’t stem it and it took the nurse an hour of heavy pressing to get it to finally stop. I got dressed in clean pj’s, and then they came in to take obs. I begged them not to take them then, that I was still too distressed from the bleeding incident and the afternoons news shitfest and they wouldn’t be good, and then they might not treat me the next day. No cigar, they did them, and fuck me if I didn’t have a FEVER. I said COME ON, ignore that, take them in an hour, but nup, back they all come to re-cannulate me, start more fucking antibiotics, any hope of treatment out the window.

Gaz and the girls arrived and we sent them away, as they are not big fans of people sticking big needles into their mum. They came back at regular intervals, but it took this bloke a LONG time to get the cannula in. If quality of life was going to start again, it sure as eggs wasn’t this horror night. In the end I could see their whole visit being wasted and told them to stay, and just not look at the needle. Fortunately, a friend had sent them some American candy from her recent visit and pug socks and they had a ball going through those until they had me sorted again. I got through the visit, hugged them all tight, had a bit of dinner, spewed that up, took a sedative, and thanks to some improvement in pain relief, actually got some sleep.

In the morning they all argued about whether I could have the treatment or not. They were having trouble getting onto my oncologist, but the head of the liver team said that basically she thought I was spiking fevers simply because I have cancer, not an infection and if we were going to wait for these to stop, then we would never start. I laid around all day, and then at 3pm it was action stations – run over to day chemo, they are ready to treat NOW, do not pass go, do not collect five hundred bucks. They didn’t need to tell me twice, 10 minutes later, I was back in the chair, like my arse had never departed the bloody thing! Then, a really lovely surprise – my oncologist said that if I had tolerated it ok, I could go home for a couple of days, until the trial of stent on Monday. Once again, I didn’t have to be told twice, and ran home to spend two days in the arms of my babies and my man and my warm bed.

Day radiology on Monday. I was TERRIFIED. I knew that getting this stent in was the be all and end all for me. I was not going to be able to take this bag everywhere I went for the rest of my life. I have two sets of hands, and they are to hold two babies at a time, not to hold bags full of bile. To some, the bag carrying would have been a small price to pay, but not to me. What constitutes quality of life is different for each person, and that’s ok.

I became a bit hysterical as they set up the knock out drugs. The interventional radiologist said that he really did think he had a good chance of getting it in, and to try and stay calm. It seemed like a few minutes later, I was waking up, and I immediately reached for my waist.

THE FUCKING DRAIN BAG WAS STILL THERE!!!

Cue more hysteria – I think I actually screamed. They were quick to calm me though – the stent was in! They just decided to leave the bag for a couple of days to make sure the stent was working and draining.

A couple of days later I felt good enough to go home. That day was supposed to be the one that they ran through the die to see if the stent was working, but the radiologist was off sick. I decided I could take the bag home for one more day, and they would test it the next day.

The next day Gaz took me to the hospital and they ran me straight into the operating theatre. The whole thing took a few seconds. The radiologist squirted some dye into the stent, even I myself could see it running beautiful through the ducts, he pulled the drain out and sent me on my merry way.

Oh my fucking god, I was FESTIVE. We were on the way! I decided that “normal” life would begin again immediately, and made plans to go out that very Friday night with friends and family – there was no time to lose!

Friday night saw me turn up at Huey’s diner, with lots of gorgeous friends and family in tow. I was running on pure adrenelin. I could hardly eat anything, and sipped on a couple of non alcoholic drinks for a few hours, but my god, was I HAPPY. Then, towards the end of the night, I started to go really downhill. In hindsight, I had pushed it, but it was worth it to just be out and amongst people and have a good laugh. I declined very quickly after that though, and each day at home, I worsened. Sicker, tireder, much more depressed. After weeks of physical and mental torture, it had all become too much, and I doubted my ability to push through this time.

My palliative care nurse visited on the Monday and practically begged me to book into the hospice for a spell, to sort out my pain, to sort out my mental health, to give me a break. I was SO terrified at the thought of going in there. People only go into hospices to die, right? I wouldn’t come out. I wouldn’t feel what it was like to snuggle into my own bed with my babies, with my fella. Nope, I wouldn’t come home again. She assured me that I would, that it was only a word, really encouraged me to get past the fear and go there, that they could really turn this situation around.

And so, I agreed, as nothing could really get any worse. And so began my 8 day stay in the hospice, and the beginning of this story really taking a different and better turn.

7 Comments on “But it has to be quality

  1. Your Dr knows how strong you are. Rest up gorgeous, because you still have shit to do xx

  2. Nothing to say but I’m reading and willing this treatment to work and for you to have quality and lots of hugs.

  3. Julie.. Words are not sufficient to express my awe for you & the way in which you tell the story of WHAT IT IS.. Do take it as easy (or not!( as you want & I want to read the next part when you are ready. Warm wishes, Denyse

  4. What a beautiful yet heartbreakingly honest piece of writing. I sit here simply wishing you all the best. Use your time in hospice to re-group and most of all rest so your body can try to heal. I have only just seen your story so I will follow you from now on. I sincerely wish your treatment to work and the stent to continue doing its job. Xx

  5. God. This is heart rending reading but l am so grateful that you did. Nothing in my life comes within 1000 miles of yours. Strength and courage to you Julia. Xx

  6. Julia – your writing is beyond beautiful – your strength is inspiring – in years to come your girls will read this and know how much they are loved – keep fighting xxxxxx

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