Emma B
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Let’s get cracking

Emma B
Posted by
26 Jul 2016

The first six days following my diagnosis, it was time to get underway with all of the tests and procedures to get me ready for the treatment that lay ahead. It’s amazing what you can pack into just six short days!

Day One (Mon 5 Oct) - Settling in

Although it would be my first, I was ready for the hospital stay.  There was no beds on my new home ward so I was given a bed in another ward for the first night and would be moved the next day.  It was 1am when the kind nurse who had been looking after me, took me into the temporary bed.  Nathan had left about an hour earlier and taken the task of getting word out to all of the important people.  As someone who always tries to do everything herself, it was unnatural but such a relief to let Nathan take some weight off my shoulders.


I now had a cannula in my hand and needed some fluid, so I was introduced to the IV machine, which would also give me blood products and treatment.  It reminded me of Brian from the confused.com adverts, so that’s what he became affectionately known as.  It’s strange to think back to that first time I needed to take Brian to the loo with me, it was one of those moments when I worried about disrupting something, moving him too fast, falling over and pulling out the line.  Nine months down the line, it’s like second nature having a drip stand in tow..


I settled down to get some rest, I was naively worried about the lady who snored like a steam train and another who was telling stories in her sleep.  There was no need to worry because I wasn’t going to get any sleep that night with so much whizzing around my head.  I don’t remember much that happened, except one of the nurses, who came into to do my observations.  We chatted for a bit and she said “the worst thing you can do is worry, it will do you no good, in fact it can make things worse”.  This made so much sense to me because that’s generally how I try to approach things.  We chatted for a bit and she gave me a reassuring squeeze as she left.


Day Two (Tues 6 Oct) - Bone marrow biopsy and meeting my consultant

In the morning my consultant came to introduce himself.  He had a very calm bedside manner but also a certain quirky way about him, I felt comfortable talking to him.  In that short meeting, I got a sense of his expertise and could’ve listened to him talking about ALL and what to expect all day.  I found that so far, all of the medical staff that I’d met had instilled a confidence in me that I was and would continue to be well looked after.


Later that morning a doctor I’d never met before came to do a bone marrow biopsy.  As a blood donor, I had no issues with needles and nothing had been too difficult so far.  That was all about to change… The softly spoken young doctor started to assemble his equipment, I remember being fascinated watching all the items being taken out of the packets without touching them, gloves and apron on for hygiene.  A nurse was at my bedside too who chatted to me to distract me from the horror that was about to happen.  


I was wearing the first pair of pyjamas that I’d pulled out of the drawer in my haste and they were long sleeved full trouser fleecy pjs.  As I lay in the foetal position, with my hip exposed, the doctor started doing his stuff.  I imagined the needle but couldn’t see anything and the nurse continued to chat to me.  My temperature was rising and I was aware of the ridiculous fleecy pyjamas, hot and stifling like a furnace.  I decided my first diva demand to the family was going to be some fresh cooler pyjamas.  The doctor had taken fluid from the bone marrow, and was now taking a sample of the bone marrow itself and it BLOODY WELL HURT!  I’m usually quite good with pain but this beat me..  As my face contorted and the sweat began to appear on my face, the nurse said I could squeeze her hand but instead I just closed my eyes and wished it over.  Even though the doctor reassured me  that I was doing great during the procedure, as I couldn’t remember his name, he became Dr Evil for the next few months.  Ironic really because I doubt he has an evil bone in his body.


That morning I saw my mam and my sister for the first time, I knew how upset they’d been through the night and whilst they were distressed when they first arrived, they felt better when we got talking and they realised I was ok.


Later that day, my consultant took all of us to a private room to explain what the treatment would look like and to answer any questions we had.  There was me, Nathan, my mam, sister and her partner.  My consultant explained the treatment, which would be intensive chemotherapy for 9 months and then a further 2 years of less intensive ‘maintenance’ chemotherapy.   The majority of the treatment would take place as an outpatient.  He explained that I would have a bone marrow test at the end of the first and second months and if the leukemia is in remission, the chemotherapy would continue, but if it isn’t, I would need a bone marrow transplant.  He said I may want to discuss donor solutions with my family just in case.  It may also be necessary to have a transplant if I am Philadelphia positive (which is a rare chromosome).   I would find out in the next few days.


He continued to say that I would be off work for at least a year.  This was such a relief to hear, because I thought I was going to have the treatment and continue to work at the same time. He said that I would lose my hair but it would come back after the 9 months intensive treatment.  He then explained the effect chemotherapy would have on my blood cells. He told me that the biggest risk during the treatment was infection, and whilst I wouldn’t get through this without an infection, this could be life threatening if not identified quickly.  He couldn’t emphasise this enough, I had to be very careful, but also accept that I will get an infection.  Whilst this did mean something to me at the time, it’s so much clearer now, 9 months down the line.


The rules - I was given a set of things to do to prevent infection and protect myself during chemotherapy.

  • No undercooked food, such as meat, eggs, fish or anything else

  • No spicy food - devastated, my fave!

  • No alcohol and I should aim for 2-3 litres of fluids a day, tea and coffee count towards this

  • No unpasteurized milk or raw eggs, such as in certain cheeses, homemade mayos

  • Avoid contact with children - they are more likely to carry germs picked up from nursery / school and because they touch everything ;-)  The same goes for adults who are not well

  • Avoid crowded places, a crowd is 8 or more people in an averaged size room

  • Wash all fruit and veg and cook where possible.  Make sure all food is within it’s use by date.

  • Keep clean, myself and the surfaces around me

  • Invest in a good thermometer and regularly take my temperature


We talked about fertility and the fact that Nathan and I want to start a family, he explained that there was still a chance of having children with chemotherapy (although this isn’t guaranteed due to the effects of the drugs) but if I did need a bone marrow transplant, it is certain I would lose my fertility.  


I felt quite calm as I listened to what lay ahead because I wasn’t surprised and this wasn’t the problem, this was the the solution.  The only thing that did upset me was to see my family so distressed around me, but it was different for them they didn't want me to have to go through it and wished they could do something more to help.


Later that night, I was moved into a cubicle in my home ward.  The nurses were lovely and made me feel well looked after.  I called my manager and had a good chat, we even had a giggle about my traumatic day!


Even though I felt calm and relaxed about what was going to happen next, how chemotherapy worked and what changes that would bring to my life were still unknowns, I still wondered, can I handle this?


Day Three (Wed 7 Oct) - MRI scan and lumbar puncture

My sister came to see me in the morning and brought along some nice light jersey pyjamas.  The added bonus was that they were Winnie the Pooh ones.  This was the start of regular morning visits as she wasn’t far from the hospital.  My mam and Nathan werre also regular visitors, each time bringing me some goodies that I’d either asked for or they thought I would like.


I started to get more visitors as the word started to get out to friends and they wanted to see me.  It was a huge lift to see and chat with them, every one of them having a different reaction and way of showing their love and support. You find out so much more about a person when you’re in a situation like this, it brings out the best (and sometimes worst) in people.


The procedures weren’t over, today I had my first MRI scan. I’d become used to the porter service now, zipping you around everywhere in a wheelchair.  I was starting to suss out who was up for some banter and who liked to work silently.  I was asked if I’d like to choose some music and then given earplugs, who knows if there was any music playing. The scan itself felt like it took a lifetime because it was a full body scan. I didn’t find the vibration or noises unpleasant but after a while the position I was in with my head pressed on the hard surface (I was still feeling stiff and suffering from headaches) coupled with the pain of the site where I’d had my bone marrow biopsy.  It was about 10 minutes from the end when it all got too much and I asked for a break, the voice in the distance said there wasn’t long left if I could hang in there a bit longer.  When I knew that I just gritted my teeth, took deep and purposeful breaths until the mystery voice said, “there we are, it’s all done”.


Later on, I was told I would be having a lumbar puncture and needed platelets beforehand, a platelet count of at least 50 is needed to ensure blood clots correctly.  Step up Brian you need to do your thing.


I found that a lumbar puncture involved a needle between my spinal bones, which would then be used to take fluid to see if the cancer had spread to the cerebrospinal fluid (CSF), which is the fluid that protects the brain and the spinal cord.  I found that I will get this procedure regularly as part of my treatment to inject chemotherapy.  This is called intrathecal chemotherapy….so that’s what intrathecal means!


So, two days after my initial news, I was back in the intrathecal treatment room to have my lumbar puncture.  I’d told the nurses that I was scared this was going to be as brutal as the bone marrow biopsy, but they reassured me that it wasn’t anything like that.  As I lay in the same foetal position I wasn’t sure I believed them, I mean it’s never really a sharp scratch is it?? Therefore, I had sympathetic sweats throughout the whole procedure, but do you know what, it didn’t actually hurt..  I had to lie flat on my back for an hour afterwards and drink plenty of fluids because they can cause headaches.  No more headaches please!


Nathan had brought me some books to keep me entertained, one of them being a book with a daily quote or affirmation.  I decided to have a look at 5 October to see what the book said.. ‘October 5 - We have no power over the events of each new day, but we do have the power over our attitude towards them’  It made me smile by how accurate it was and when I showed Nathan, he asked if he could share it on Facebook as part of a message to let people know about my diagnosis.


I couldn’t believe the support on Nathan’s post, hundreds of our friends liked it and even more took the time to comment and leave a well wish.  I also received a lot of private messages of love and support.   I really didn’t expect so much kindness and it really did give me a boost, knowing that so many people cared and were willing to help me if I needed it.


Day Four (Thurs 8 Oct) - Clinical trials, heart echo and blood transfusion

Earlier in the week I had been given some information about clinical trials and asked to consider whether or not I wanted to take part in them.  There were three double-sided A4 sheets of information about them and I read them three times or more, but the information just wasn’t sinking in.  


The easiest one to digest was regarding the kind of central line that would be inserted for taking blood and receiving chemo and blood products.  There were three options of central lines, a PICC line in the arm, a Hickman line in the chest and a Port located under the skin.  As I looked through the information, I thought a hickman line would be awkward with the location being in the chest and it might move a lot, I didn’t really understand how a port would work, so I thought the PICC line in my arm looked the best option to manage. The trial involved randomising the line type, so I asked if I could be excluded from the trial and have a PICC line inserted in my arm.  That was going to turn out to be a bad decision.


With regards to the treatment trial, my consultant came to talk me through it because no matter how many times I read the documentation, I still wasn’t sure what it meant - being an expert now, I can understand it fine :)  I explained to him that I was happy to support the trial because I know how important these things are in moving treatment forward, this was providing I was getting the best treatment possible.  My consultant explained, the treatment was by no way lessened by the trial and it was intended to test a newer version of one of the drugs and an addition of a biological therapy to the existing regime.  I agreed to sign up for this trial - ALL14 and I was a given a spreadsheet that outlined what the first two months of chemotherapy looked like.


Today was my penultimate ride with the porter and it was to get a heart echo test.  This is an ultrasound of the chest to see how your heart is performing.  The purpose of this was to baseline my heart to monitor the effects of the treatment.  This was a strange one because I was lying naked from the waist up while the radiographer put little sticky sensors around my torso  and used gel and an instrument to monitor my heart rhythm.  We chatted about running, eyelashes, sports bras and I forgot what was going on, but this wasn’t painful in any way, just cold and the gel is sticky..  Nothing is yet to beat the bone marrow biopsy!


When I got back to the ward, I was told I needed a blood transfusion because my hemoglobin was low.  I’d heard about blood transfusions but didn’t really know what it entailed.  Just like the platelets, I found it was infused via Brian and two units took 3 hours.  It was fascinating to think, as a blood donor, this is the kind of thing my blood would have been used for.  It’s sad to think that I have now had more blood than I had previously donated.  As a lot of my symptoms were as a result of low haemoglobin, the blood transfusion made me feel much better!  I joked that I was just like a vampire - give me some A+ please!


Day Five (Fri 8 Oct) - Meeting my specialist nurse and getting my PICC line

Today I received the yummiest of deliveries, a hamper from Hotel Chocolat!  It was from the COO office at work and such a lovely gesture.  A couple of days later, the senior leadership team also sent me a Hamley’s teddy bear and arranged for my thermometer, fantastic gifts!


I met one of my Specialist Nurses today, she introduced herself and said that she worked alongside another, who would be there for me if there was anything I needed as I went through my treatment.  She gave me her contact details, which I was to use if I needed anything once I was discharged, even if it was just to have a rant!  We chatted for a bit about what had happened so far and she asked if I had any questions, once again my mind was blank without knowing the details of what was coming.  I didn’t appreciate at the time, the important role these wonder women would play in my journey.


My final procedure was to have my PICC line inserted, the procedure was using local anaesthetic and inserting a thin tube into my arm and using an x ray screen to guide her through where the tube needed to go in the large vein just above the heart.  She used the famous ‘sharp scratch’ line, pffft I don’t think so, but it wasn’t too bad if I’m honest.


Later that day, I got a visit from my step sister and two friends from work who were full of energy and came with lots of stories to tell me, which was great when I was tired of my own voice and telling the same stories, it was nice to have a normal conversation and a giggle.  They also brought me a wonderful present of practical and fun things that would help me through my time in hospital.  


Day Six (Sat 9 Oct) - More blood and let’s go home!

I was starting to get comfortable in my little room and had my daily routine, free TV up until lunchtime and the daily interactions with the doctors and nurses.  I’d pretty much finished all of the ‘firsts’ and almost all that was left to do was start the chemotherapy next week.


After another blood transfusion, I was given the green light to go home for the weekend to come back next week to start my treatment as an outpatient.  Once the pharmacy had signed off my medication to take home, I had never seen so many tablets in my life, the nurse gave me my final instructions and sent me on my way.


As I approached the end of a whirlwind week, I think I’m ready for what is due to come next and I’m pretty sure I can handle this.


It was lovely to go home, to return to a bit of normality, but things weren’t normal any more. I now had to think about new habits and new routines.  I also felt a little bit worried that my comfort blanket of the nurses and doctors had been taken away.   I had Nathan though, who was taking this very seriously and supporting me, so I felt comfortable and ready to get cracking with the chemo next week.


Let's get cracking!
Hotel Chocolat



Great blog! I'm sorry to hear your bone marrow biopsy was so bad, I always have gas and air during mine and it really helps me stay calm and not feel the pain as much - that is, so far, I'm having another one tomorrow! 

Steve J

Emma, I agree with Martha - great blog! It took me back to my treatment for ALL (Ph+ unfortunately, still that`s what comes from having parents from N.Ireland - too many Ulster fries) during the past couple of years. I had good intentions to write and sketch my impressions throughout treatment - don`t know what happened ? I just submitted myself to the treatment, laid back and thought of England and put my trust in the professionals. Anyway I`m now 8 months post transplant, feeling okay and trying to make sense of my new life. Best wishes with your treatment and I look forward to future blogs....you describe the journey so much better than I ever could. Steve 


Sorry for the late reply, I pretty much ended up in ICU not long after writing this.  I didn't think I had any options, but gas and air might be a goer!

I've just read your blog Martha and I have to say it's absolutely heartbreaking.   It's really brave of you to share it and I hope you've managed to put it all into some perspective.  I can't imagine what you've been through, but hope you have many more positives coming your way xx


Thanks Steve, it's actually quite strange writing them so long after the events, but it's also been quite theraputic too.  I've a lot more to share after a varied 9 months, I hope they are useful.