Emma B
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High dose methotrexate and adjusting to life following my surgery

Emma B
Posted by
14 Oct 2016

Next step on my treatment plan and sometimes the simple procedures are the ones that get to you the most

I haven’t written about any specific chemotherapy sessions because there’s not a great deal to say.   The days are usually long, there’s a lot of waiting around, and unless you get a reaction, the process is fairly straightforward with limited drama, particularly when you have a central line to use.  That’s certainly my experience so far.  You will find that times will vary from the longer infusions taking hours to the tiny ones where a nurse sits with a syringe and it’s over in seconds.  The side effects usually come any time from that day to months after the last infusion and all depend upon the chemo drug you’re having.  I could share a whole lot more about side effects..perhaps for another time.


The high dose methotrexate is slightly different to the others.   This was the first treatment on the next stage of my plan, Intensification.  Unlike the rest of the treatment, which was done as an outpatient, this phase would be a hospital stay for 4-5 days.  I was admitted on 1 Feb, which was only two weeks since I’d been discharged after my spell in ICU, but I felt ok because I knew it was for a set amount of time.  I also knew that I needed to get treatment back underway because I’d ended up with a significant break due to my surgery.  The last time I was in hospital, one of the patients had brought in her own duvet and pillow.  I was so impressed (little things) so when I went in this time, my duvet and pillow came with me.


As my PICC line had bit the dust, I had a cannula inserted into my left hand and a temporary line in the inside of my left elbow.  The doctor then explained that I would get an initial bag of fluid, then the high dose methotrexate would infuse for 23 hours alongside the fluid and then due to the toxicity of it, I would get another couple of days of fluid and they would monitor the levels in my blood counts until it returned to a normal level again.  Therefore, Brian (drip stand) would be a permanent attachment for this stay.  I would be given an IV of folinic acid to help those levels reduce. As part of my regime, I would also get an infusion of PEG-Asparaginase, which as normal would run over 2 hours.


As I had fluid running constantly, I was pleased to be in my own cubicle because toilet trips were frequent.  Additionally, due to the nature of the drug, the nurses had to check the Ph levels of my urine so every single toilet trip had to be sampled.  I wasn’t sure if I would sleep with being constantly attached to Brian via a cannula, but with my cosy duvet, I was able to sleep when I could.


This wasn’t an unpleasant stay in hospital, I just found it was a bit awkward.  My wound on my abdomen was still open and I didn’t have any abdominal strength to get myself up and about.  The physio had taught me a nice little roll technique to get out of bed, which I was using well but I found it increasingly difficult to get up as often as I was.  It seems such a simple thing but the toilet was to the right of the bed and Brian and my cannulas were on the left, making that trip just a little more onerous.


Although I was over the initial complications of my appendix surgery, in the last month and a half the wound was still open and was being dressed and packed by the district nurses.  As I had been cut right through my abdomen, the only way I could get comfortable at home was to lie down and I couldn’t walk very far because I had no core strength.  I was still in a lot of pain and it felt like it was never going to get better.  There was also no guidelines, I had no immune system at the time of the surgery and I was now going to receive more chemo which would again affect my neutrophils so would mean that I had to be patient with the healing process and be extra vigilant for signs of infection.


Since the start of my journey so far, my attitude has been to tackle whatever’s thrown at me to get rid of the cancer, even when things get tough.  No matter how positive you are and how much resilience you have, it’s hard not to feel fed up sometimes, which I found as I wheeled Brian to the loo in the dark for what must’ve been the 20th time and would ring the bell to tell the nurses I had another sample to pick up.  I looked at myself in the mirror, all bald and skinny and had to remind myself why I’m doing this in the first place and thinking of all those people who have it so much worse than me.


On day 4 everything was as it should be, the blood and ph levels were as expected.  I had developed a rash around my neck, which I took to be an allergic reaction to my washcloth / shower gel but I found out later it was a side effect of the methotrexate.


My consultant had agreed for me to have a Hickman line inserted, so they decided to do it while I was an inpatient and the doctor came to discuss it with me to make sure it was definitely what I wanted.  The doctor was a broad man, with a german accent who knew his stuff.  He explained to me the options I had, PICC or Hickman and the risks of both.  I’d had a lot of conversations with other patients and nurses over the last 3 months about the Hickman line so I’d made my mind up anyway, but it was useful to hear the information from someone in the know.


Even though I wanted a Hickman line, this is the first time I felt a bit scared of a procedure.  On reflection, it was only a month after I’d left ICU and the experience was still quite raw, particularly when the doctor had to explain the risks, some of which I’d experienced during my time in ICU.  I felt anxious and like I just wanted to curl into a ball and not have any prodding or poking.  I told the doctor how I felt so the team were fantastic and treated me like an antique tea set.  The rash on my neck was quite fiery, so I was given an antihistamine to calm it down before the procedure.


After all of the anxiety and stress, I found the procedure fine, albeit with a little pinch of a nerve which made me wince but was sorted quickly.  I came out unscathed with a new line, so no more cannulas and stabbing.   Yippee!


Everything went well with the treatment and I could go home after the planned 5 days. There were some pretty crappy side effects from the high dose MTX when I got home and I think the best way to describe it is like a monumental hangover without the joy of the wine beforehand!  The extreme tiredness, nausea, aches and pains, that deathly fear of something that you can’t explain.  I spent those four days on the sofa or in bed (unless I had to go into the hospital for a blood review) and just waited for it to pass.

I would repeat this cycle again in two weeks time, but with my line this time, which made things so much easier to manage, although I was in a shared bay this time so I had to share a toilet and wake up other patients through the night with my beeping Brian machine!  My wound was still open and I still didn’t have a lot of abdominal strength, but I did it and was out of hospital again in 5 days.

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