Fear of needles
I wouldn’t say I’m an ordinary 21 year old (22 when published) but I’m human. Just like anyone else. And I want to tell you about my version of being human. Who I am. What I do.
I want to start off by saying I love my life. I only have one regret. That is that I wasted 2 years of my life doing a-levels that I failed. I still got to where I want to be but with less qualifications and I didn’t gain much else from it. The reason I say I wasted it is because I had the opportunity to go to college, do a BTEC in Public Services at a college a bit further away from me with people I would never have met in my life. Should have done it, never did. That’s my only regret.
I love my boyfriend Jack. He literally is the best thing that’s happened to me. I honestly do not know what I would do without him. I love his cuddles, his humour, and his smile. I don’t love everything about him but that’s what makes Jack and that’s who I love and want to build a life with. *This was how it was at the time of writing this. We aren’t together anymore. Partly because of the cancer but mainly because life gets in the way and we grew apart. I wish him all the best I life however that chapter has ended.* I love my family. They are a big family and we stick together no matter how annoying they can get. They are part of what I have become and achieved so far and I wouldn’t want it any other way.
I love my job. Being a Police Officer on response team has been an ambition of mine since I was young and nothing can take that away from me. I want to make the most of it and it already is a huge part of my life. I like helping people. That’s the main reason. I also like bringing people to justice and getting out there on the streets on the front line doing the initial investigation. I won’t stay on response team forever but for now it’s what I’m comfortable with.
Obviously growing up you gain all different skills and qualities. I learnt this whilst doing public services at school. I learnt what skills and qualities I had. Some came from school but most came from the different clubs and organisations I got involved in. I did so many different sports clubs in and out of school.
There’s a few topics I think strongly on naturally like any other person. However I hate politics with a passion so to save the agg I will leave them out.
I volunteer with the police cadets. I go to the gym. I like socialising with friends and having a drink once in a while. I like shopping and spending money. I like going on long walks and being outdoors. I love music. I have a different genre for each mood so don’t ask me if I like a specific type of music because it honestly just depends.
I like to keep myself busy. I wish there were more days in a year so I could do more. But there isn’t so I have to make the most of what I’m already doing.
Everyone has fears. Everyone fears something in life whether it’s teeny tiny spiders, swimming or small spaces. I can honestly only think of two fears I have. Heights and needles. I hate heights because there’s an unknown to it. But I only hate heights when I’m not strapped into a harness. I would happily go bungee jumping because I’m strapped in. But cliff jumping, which I’ve done before, is scary. I did it but totally psyched myself out. Sounds stupid I know but that’s me and I would definitely try it again.
And needles. This journey has meant I’ve had countless needles stuck in me but I still hate the things. The nurse will say “sharp scratch” but it’s not a scratch. It’s a very sharp pointy thing piercing your skin going into your body. A completely foreign object. Needles are a no go for me except when I want new piercings.
So that’s me in a nut shell. I wanted to give people an insight into the type of person I am before telling my story. Hopefully this will help to understand my story a little better.
So on Friday (23rd July 2021) I had a little wobble with my mental health. I had a blood test as part of my regular check ups whilst in remission before next Thursday (29th July 2021) when I have my telephone consultation. Everything should be fine. I feel fine. However as soon as I walked into the hospital I got very emotional. I havent been to the hospital in ages and it all hit me at once. The smells and sights and familiar faces of staff who didn’t recognise me but I recognised them. The cleaner who always wore her glasses around her neck. The moody cafe staff. The male nurse from radiology. It all came rushing back so quickly I was so overwhelmed.
I booked myself in at phlebotomy and was called through shortly after. As soon as I sat down I saw the needles and just couldn’t cope. I instantly started to tear up as I remembered all the needles I had stuck in me during treatment. All the bad memories. I couldn’t help it. I couldn’t stop myself thinking about it. It can seem like such a petty fear but it’s real.
Work is stressful. The commute is very long and the workload is crazy. It can get a bit too much when I’m thinking about the cancer as well as work. It sometimes may take a few minutes, hours or even days to get over these little bumps in the road but I eventually do. I try to refocus my mind and just keep myself occupied but going to the gym, going for walks or just keeping myself busy outside of work. If I give myself too much time to think I just drive myself crazy. Writing about my breakdowns also helps. It just organises my thoughts.
What a crazy time it has been since I last updated this. The world went crazy. I went crazy. So here is my mega update for you all.
Firstly I’m doing fine. I’m back to work on normal hours and normal duties. I have had regular blood tests and everything is looking good so far. I have got about 9 months left until I should hopefully be in the all clear. I have another blood test at the end of July and hopefully this should be fine. I’m always nervous before a blood test and I think I will be until I am in the clear. I can get quite emotional and my thoughts are always all over the place. I’ve learnt to accept this and just keep going with the flow.
Secondly, Jack and I broke up. Last year, 2020, was very stressful for us. After finishing chemo I thought life was back on track and everything was looking up. Then in March 2020 when covid hit I got sent an awful text telling me I had to self isolate because I was in remission and classed as extremely clinically vulnerable. This put a massive strain on our relationship as we were just getting over the cancer. At Christmas I got covid from work and had to self isolate. Jack didn’t handle this well and instead of looking after me whilst I was ill he kept raving on that he would sue my work because I got covid and had apparently not made sure I had done everything to not get covid. This obviously didn’t go down well and I spent the rest of my Christmas at my parents house. I had started to rethink our relationship and how it was going downhill. After Christmas we had discussed things and I told him it was his last chance. Long story short, there were quite a few times in our relationship where Jack would have a go at me or where we would argue when I had done nothing wrong and it wasn’t fair. He knew he was in the wrong. After trying to save our relationship I gave up and in March 2021 I told Jack I didn’t want to be with him anymore. That I didn’t love him anymore. We had grown apart and I did not love him like I used to. I felt so guilty at the time because we had been through so much together but I knew it wasn’t working. The break up was difficult. Jack made it difficult. I eventually had to block his number and block him from social media.
Thirdly, I have been struggling with my mental health. I really struggled during isolation. I isolated for 20 weeks during 2020 from March to August and honestly it was so depressing. I felt useless and just so numb. I was fed up of the cancer controlling my life. I eventually decided to get help recently within the last few months when I had a breakdown before work. I needed help. I am still receiving help now. This help is in the form of counselling. I can speak about whatever I want. I talk through things and the lady I speak to is very kind. I’ve never met her face to face as the sessions are via telephone due to covid but they still help.
I can honestly say I feel so much happier now. I have come out of a relationship that wasn’t working. I am in the process of buying my own home. Work is still a bit touch and go but I am trying my hardest to make it work because I still love my job. I still love helping people and preventing and solving crime. I have always loved it and still do. I have a few issues with the politics and people I work with but i am learning to try and push past it without causing too much drama. My main goal in my career is to help people and to make a change for the good. I want the job to be a healthy place for people to work. I know this isn’t fully possible due to the fact we are dealing with another side of life only we see as officers, however our first priority is preservation of life. So why can this not be applied to ourselves?
I will do this job until I retire.
I love revisiting these blogs and I love seeing how many people have read it. There are people from every continent who have read what I have wrote. It is insane and I really hope it helps others going through a similar thing. I promise to try keeping this updated more often. Life has just been so busy and I got a bit confused but my head is nearly screwed back on and I’m getting there. Slowly but surely.
So I have finished treatment just over a month now. I’ve had my first follow up appointment at the hospital with my consultant Dr Philpott. She was really pleased with the blood tests I had taken a few days previously.
Getting back to normality was slightly more difficult than anticipated. I knew it would be difficult but what has made it more difficult is that physically I look fine. I have people say to me that they would never have guessed I had Leukaemia. But like I said before it’s only just been over a month. Inside mentally it will take a while for me to get back into the swing of things. Also I have a new outlook on life, I have a new attitude towards work. This experience has changed me.
I went through a lot. A lot of everything. People have been through loads of shit but personally this journey has made me feel loads of emotions in a short space of time which doesn’t help psychologically or physically. I was so exhausted from the treatment, obviously, but also the amount and intensity of emotions I felt.
I enjoyed Brussels and Christmas and New Year. I started back at work. I went back to normality. That’s what it looked like physically. Inside I knew I would always be worried that I would be part of that 10% chance of the leukaemia returning. I still had follow up appointments reminding me that I had gone through 9 months of pain and suffering but also reminding me I had fought off the cancer. Until you’ve had cancer you don’t know what it’s like. I didn’t have a terminal diagnosis but I was very ill. It was silly because some nights when I fell asleep feeling like crap I was worried I wouldn’t wake up in the morning. It sounds silly I know but that’s just how I felt. I was worried about going back to work and not fitting in because I was so out of touch about everything. I was worried I’d make mistakes and my colleagues would give up on me. Again I know it sounds silly but that’s just how this whole thing has affected me.
Most of the time the worrying actually helps me overcome whatever it is because I don’t want to let it overcome me. But there are some times where it does overcome me.
Below is a list of emotions I felt during my experience
Shock- One of the emotions I didn’t feel much but played a big part. The shock took place when I realised my life got flipped upside down and twisted and warped into a life I had never dreamed of and never wanted. I was always active and a go getter so being in a hospital bed for a month and having restrictions on pretty much everything really didn’t go down well.
Frustration- I get frustrated when I get confused, can’t understand something or if somethings not going to plan. Frustration is annoying and tedious. Frustration is like a little dude in my head constantly poking me until I get angry and blow. I can control my attitude and behaviour during frustration but it can eventually turn into anger.
Fear- I feared a lot. But. I don’t know. This is hard to explain so just stick with me on this one. I wasn’t scared about dying. I knew I wasn’t going to die. I don’t know if I was being naive at this point, probably I have a tendency to do that in sometimes. I feared that my career wouldn’t be the same. I feared my home and family life wouldn’t be the same. I feared I wouldn’t be the same and I wouldn’t be able to do the things I loved for a long time. Again this whole thing puts restrictions on everything so I feared those restrictions would get the better of me.
Confusion- I was confused as to why this has happened to me now and why me at all. I had just started my dream career and this massive boulder called cancer comes and completely wiped me out, launching me into the universe of cancer.
Sadness- of course sadness. Everyone feels it in their different ways but it’s always there. It’s natural and I cried A LOT. But these came in short bursts. It was my way of letting go. Some people punch walls. I cry. That’s just me.
Anger- I didn’t get angry until I was in the third week. For me anger and frustration is different. I handle them differently. I get angry when I can’t handle it any more. I shut everything and everyone out and go on an emotional rampage.
Patience- I didn’t think I’d write this. I’m writing about this at the end of my chemo. The rest were written during the points I was most feeling them. You have got to have patience. I believe I was patient for the most of it, because I had to be, but patience can get tedious as well. So had to distract myself from the thoughts that would creep in whilst I was being patient.
On Monday 18th November I started my LAST cycle of chemo. Wow that feels unreal. This fucking cancer has taken over my life, no matter how much I try to deny or ignore it, but I’m just so glad I’m seeing the light at the end of the tunnel.
I had 5 days of chemo to look forward to. The Monday was okay I guess. I had the bone marrow biopsy which is still awful and doesn’t matter how many times I go it will always be just as painful. It doesn’t get easier.
This cycle affected me so differently compared to others. One of the nurses, Keeren, said that it’s not uncommon for people to have it rough during the last cycle. It’s thought that your body knows that it’s the last cycle so in your mind you’re wishing so hard that nothing goes wrong that you inevitably end up stressing yourself out which can make things worse.
I suffered from a constant awful headache, which I believe was more like a migraine even though I’ve never had migraines I don’t think. I was told by a doctor earlier in the year that migraines are under diagnosed so I think this was the case with me. A mixture of the headache, the chemo and the medication made me sick (vomit) on the Wednesday at home after chemo that day. This was unusual, I had only been sick a few times throughout my treatment. But this made me proper sick.
So I went to A&E, they gave me some pain relief and anti-sickness. They also gave me this to take home. It pretty much fixed it overnight. It was such a relief not to have that crappy headache. Then it was just 2 more days of chemo. But then I had to have my PICC line changed again! Omg when will my body understand I’m going through a lot with the chemo alone, I don’t need this shit. I had to have it changed because the site became infected. I had it put back in in its original place on my right arm. I only had six sessions of chemo left.
The rest went pretty straight forward. I was counting down the days whilst getting into the Christmas spirit. I was also looking forward to going to Brussels with Jack to celebrate the end of chemotherapy. I had my work Christmas do and went out with mates.
Then it came. The last day of chemotherapy. It was so great. I got there and had my chemo, as per usual I was the last to finish my chemo that day so I was the only patient left when I got to ring the bell. It felt so surreal and was ridiculously overwhelming. I cried of course. I smiled and my cheeks were aching from smiling. I said goodbye to the nurses who treated and looked after me for so long. I also said goodbye to my favourite chair. Then I walked out the door and breathed in the fresh evening air feeling like I could conquer anything.
On Monday 23rd September I started my 4th cycle of chemo. The penultimate cycle (hopefully)! I had another bone marrow biopsy which I was still feeling until the Friday. Still the most excruciating pain ever. If you’ve had one you’ll know. I’m sure it’s worse than having a baby. Then the week of chemo. It affected me differently this time. I felt so run down and suffered with headaches quite a lot. I still felt sick but not as much as on the last cycle. On the Friday I was edging towards not having chemo that day. I really didn’t want to do it. The only way I can describe it is when you’re at the gym, and you’re on the treadmill doing 30 second sprints. Towards the end between each sprint you really want to give up! Like REALLY want to give up. But you find something in you and you complete the next few sprints with all you’ve got. You feel invincible and you complete the last sprint better than the one before. After you finish your sprints and you’re walking for a minute because you’re legs feel like jelly and you want to collapse to the ground, comes a huge sigh of relief because you’ve done it and despite the pain and emotional frustration you know you can do it all over again. Just not that very second.
That is what these weeks feel like. These weeks of chemo pushing through each session. The chemo only runs for two hours but you’re sat there all day waiting for blood results and any other bits. I’ve been sat on a flight longer than that but the fact that my body feels like it’s so drained of energy is what makes it hard. Constantly feeling ill. Constantly wishing to feel like you could go back to going on long runs and doing 12 hour shifts. That’s what I miss. I miss living. Because that is what it means to me. Living to me is being adventurous. Not getting embarrassed because you laughed too hard at something or how goofy you looked when telling a story to someone. Living is spending your money on what YOU want to do. Whether you save for a few years to buy a house (okay probably more than a few) or whether you go on shopping sprees each month. You do you and who cares what people say, who cares if someone thinks that you’re not cool or fun because you’re not the type of person to go out on pub crawls every weekend getting pissed and not getting home until 5am. I would rather grab a few drinks, take yourself to a grassy hill where you can see for miles and get wasted there, knowing that you’ll be in bed by 1. Everyone’s different. So figure out how you want to live and just do it. Don’t be afraid because you’ve only got one life and you can fill it with as many mistakes and achievements as you want. (Rant over)
I finished this cycle of chemo thinking it went quite quickly and got back to normality by going back to work and going out again more than I did when I was having chemo. I attended Alex and Hannah’s wedding which was such a lovely day to be part of and they looked amazing.
On Jack’s birthday we went to Basingstoke’s version of Oktoberfest. It was a decent night despite the rain. But when we all got back to my mums my brother and sister fell out with each other over a petty argument which turns out actually had some deeper issues (only that I know of.) It hasn’t really been the same since and the annoying thing is the argument stemmed from a discussion surrounding the politics of cancer treatment (sounds fancy but it wasn’t that fancy). And I don’t think this discussion would have started if I didn’t have leukaemia, can you see where I’m going with this?
I don’t know I just feel a bit guilty and deflated about how the situation is turning out. But what can I do about it. I am worried that it will affect Christmas. I’ve associated Christmas with the end of my chemotherapy. So I want it to be perfect. I want my cheeks and belly to ache from smiling and laughing so much. I want to feel overjoyed with the Christmas spirit.
It all got sorted out in the end but it’s still not the same.
The rest of my 4 weeks off were pretty decent other than that. I just divulged into my work and meeting up with friends and socialising. I was a bit of a rebel and got my third lobe piercing whilst still recieving treatment. Ha-ha that was fun. I felt so excited to do it and was buzzing afterwards. I wasn’t meant to get it, it’s definitely not advised whilst having chemo for a blood cancer where you’re a risk of infection but I just thought ‘fuck it!’ I can do what I want to do with my body. I will deal with the consequences later. And I love my piercing now, it’s part of me, just like my scars from my treatment are.
After the three weeks I had 4 weeks off of chemo! I was so excited to have some proper time off. It would be great to have normality back in my life and I couldn’t wait! The first week jack and I went away to the new forest for 6 days. We stayed in a friend’s caravan and used that as a base to go do loads of things. We did a 20 mile bike ride around the new forest. We went to monkey world, Nothe Fort in Weymouth, Brownsea Island, Poole, Barton-on-sea to see Jack’s relatives. And on the last day we drove over to Brighton stopping at my auntie’s house, who I hadn’t seen in years, to say hello. I had only been to Brighton briefly one October so needed to experience it properly.
It was a lovely week away and we definitely needed it. Jack had been working hard and was dealing with me at the same time so it was well deserved.
I went back to work for a few shifts per set. I was only on 4 hour admin shifts and it was enough. I went out with friends and met up with work colleagues for lunch and drinks (non-alcoholic unfortunately). It was good to feel normal again. Most of the time I forgot I had leukaemia. I did still have the PICC line in my arm which was there to constantly remind me but other than that I felt fine. I was going on short jogs. I was going food shopping and enjoying the sun, even though the doctors said to stay away from it, but you only live once and you got to do what you want to do. Be selfish. It was a good 4 weeks.
Then came the start of the next cycle. It was my 3rd cycle and I really wasn’t looking forward to it. I had had 4 weeks of freedom and now I would go back to sitting on my butt for the best part of 4 weeks feeling sick and sorry for myself.
A week before going back I had to have my PICC line re-dressed which is standard. I have this done once a week. But on the Monday before my next cycle started I had to have my line seen by the specialist nurse who inserts them. This was because the insertion site looked infected and my skin was red, itchy and sore underneath. It was from when I had the allergic reaction to a previous dressing and my arm didn’t heal properly from that. So they put a patch of silver on to try and draw out any infection and put a different dressing on. Came back on the Wednesday and it didn’t look much better so they took out the line and left it to heal. I then came back in on the Friday to have a new line put in my arm. I don’t like needles so already I didn’t like the procedure. I know I had had it done once before but it doesn’t hurt less just because you know what’s coming. It’s not better trust me. I’ve been through it.
Then the following Monday I started my 3rd cycle of chemo. I had another bone marrow biopsy and all the pain that came with it. I wish there was an easier way to get samples.
I had chemo every day except on the Friday. I was meant to but the ECG showed something which meant they couldn’t give me the drugs. So I was sent home to recover on the weekend ready for 3 weeks of treatment on a Monday and Thursday. It went alright. Same shit different day. Me complaining I didn’t want to do it and family and friends saying, “not long to go now!” “You’re halfway there!” “Stay strong, you’re so brave.” It’s nice to hear these things but when you are feeling like absolute crap these words really don’t help much.
I went back to work in my 4 weeks off of chemo which was great. I loved being back at work and socialising with everyone. I loved having some form of normality in life even if it was just 4 hours a day sat at a computer. I joined the job to physically do something about the world we live in and this disease has held me back from doing that.
My team from work and a few family and friends took part in the nuts challenge on Sunday 1st September, a 7km muddy obstacle course with 100 obstacles in their way. It was a great day! Even though they were tired and bruised and completely written off they still smiled when crossing the finish line. Jack and Jodi ran off at the front and smashed the course. They did it so well I literally caught them right at the end. Then my team came through next. They waited until everyone got to the end of the course and we all ran through the finish line together. Hannah was next to finish the course. She didn’t finish long after my team and she did it by herself bless her. But Hannah said she enjoyed it like that. My dad, Laura, Shannon and Nico were the last to finish. They looked so worn out. But I’m so proud of each and every person who took part. I was outstandingly proud of them all. They did this to raise money for the Eden Ward at Wexham Park Hospital and for Leukaemia UK. We raised over £2500 and planned to give it to them on a big cheque. I will definitely be joining them next year!!
My family celebrated my mum’s birthday and mine and Jodi’s birthdays which was nice since I didn’t have chemo. I ate loads of chocolate and cake (standard). I then carried on at work until it was time for my next round of chemo.
I then spent the next few days at home. The Friday I spent mostly in bed except from getting up to eat and go to the toilet. I wasn’t feeling ill I had just really missed my bed. On the Sunday mum and dad did a BBQ. It really wasn’t BBQ weather so we stayed indoors and again I enjoyed the company and loved every minute of it.
We stayed at mum and dads for the night then came back home. Jack and I went to Sainsbury’s to get baking stuff as I wanted to bake during the week to pass the time.
And then it just went on from there. I was in twice a week for the next four weeks having chemo before my 2nd cycle began.
During this time I started getting annoyed of people saying “I’m sorry this has happened to you” or “you poor thing” all pessimistic things. I know they were just trying to consolidate me but I was over that part. I guess you could even say I had started getting used to it.
I decided to post about my diagnosis on Facebook and Instagram because my team from work were taking part in The Nuts Challenge to raise money for Leukaemia UK and The Eden Ward at Wexham Park Hospital where I received part of my treatment. So I shared their just giving page and my diagnosis.
I got a lot of responses. A few people messaged me that I hadn’t heard from in ages which was nice. People shared my post and the message spread.
I was still off of work which got to me because I missed my job and socialising with my colleagues. I visited them a few times before going back into hospital. It was nice to see their faces and have some normality in my life.
Monday 3rd June 2019.
I went back in for my second cycle of chemo. I spent a week in hospital and it was the worst week ever. I got there the first day and I had my treatment on the day unit. The staff there were so slow and, bearing in mind I had had treatment there for the past few weeks, they still got my bloods wrong. This meant it delayed me having chemo. One of the nurses came and spoke to me saying they had forgotten to say on the blood form that magnesium needed checking. So that took another 2 hours. At 6pm I started my chemotherapy. I was in at 11am that day. I’ve come to notice there is a real lack in communication on the ward and the day unit. A bit more communication and effort would make the ward and unit a lovely place. But I’ve had all my treatment there so far so I know that’s not going to happen.
I then got moved to the ward where I would stay for the next 5 days for the rest of my treatment. So I didn’t know this until now that chemotherapy had to have a 24hour gap in-between each session. I didn’t know this. So I was waiting all day in my hospital bed with these stupid stockings on (to help with blood circulation and prevent clotting. I could have had an injection to prevent this but I hate injections) for my next round of chemotherapy. I was asking the nurses all day and it’s not until 3/4 pm that one of the nurses tells us I can’t have it until 6pm +/- an hour because of the 24hour rule. I was not happy. So I have my chemo late again. The next day is Wednesday so I ask the nurses if I could have day leave because it wouldn’t be until the evening that I would have chemo. Nurses and doctors said yes so my mum, Jodi and I escaped and went for a pub lunch. My bloods were fine I was feeling fine. It was all good. Plus it was a nice break from the two messed up days I’d had in hospital so far. Wednesday comes around. There’s a shortage of staff (of course this happens when I’m in). The nurses work on 12 hour shifts and do either day shift or night shift. They had no chemotherapy trained nurses on during the day so I was told I would have my chemo slightly later when the chemo nurses come in for the night shift (it didn’t bother me too much but still an inconvenience). My chemotherapy came and is supposed to be check by the delivery guy and the nurse in charge. Obviously the nurse in charge is not a chemo nurse so he didn’t think to check the chemo for its expiry times. Most chemo has a shelf life of a few hours. So it’s made the day of or the day before the patient receives it.
The night nurses come in and my pump is already set up by the day nurses. I’m connected and ready for my chemo. But guess what… something else goes wrong! (I know! What a shocker.)
The chemo nurse on duty, I won’t name names but she’s a lovely Irish nurse (one of the two lovely Irish nurses), came into my room at about 7pm I think and said that the chemo expired two hours ago. They couldn’t give it to me because they couldn’t get hold of the supplier to see if it was okay to give it two hours past its expiry. They spoke to my consultant on the phone and she had advised I make a complaint. Now with having leukaemia and receiving treatment and everything else that was going on I didn’t make a complaint. Probably should have because it may have fixed the communication issue but I didn’t because it was another thing I would have to deal with and I could not be bothered.
At this point I think I laughed when I found out because I had already had enough. I was going to go grey if I kept getting frustrated. So I laughed at their incompetence. Moving swiftly on. I then had chemo on the Thursday, Friday and had to stay in an extra day on the Saturday to finish my chemo. Since I’d missed a day I could have the chemo earlier because it was past the 24 hours. During this hospital stay I had an allergic reaction to one of the dressings (another new thing that wouldn’t have happened before being diagnosed. I never had any problems with my skin before). So I had a different dressing put on which a few weeks later my body would reject as well. I’ll explain more when we get to that.
I then went home with more meds and carried on with chemo twice a week for the next 3 weeks in the day unit. What a joy.
The next morning, Friday 29th March 2019, I was woken up early by nurses and more tests. I also had to go for a CT scan as I was suffering quite badly from headaches which I believed were mainly from the stress and tensions of the whole situation. They started me on the chemo. I was told this chemo shouldn’t make me feel sick but since this treatment was quite rare we would be taking it one step at a time. Again I was quite tired throughout the whole day and my family stayed with me for the whole of the visiting hours. I had so many products and medicines pumped into me I cant even remember what I had. I know it was a lot and the gravity of the situation was slowly sinking in. I was very ill. But I needed to get better.
The doctors and consultants do a ward round on a Friday afternoon so I met most of them and they were all very supportive and encouraging that they were doing everything to get me better.
The next day, Saturday 30th March 2019, I had a nurse called Chris come and put a PICC line in me which would save the nurses and doctors constantly pricking me with needles and save me having cannulas sticking out of my arms. The PICC line was entered through a vein in my right arm and ended up sitting just next to my heart. All my bloods and treatment would travel through this line. The only other times I would have to have a needle would be if they needed to give me a shot in the thigh or tummy.
Chris was really nice and explained everything to me. It seemed a bit daunting at first because he had to use loads of surgical equipment but once the line was in it was fine. There was a bit of bleeding and bruising but Chris said this was normal and would go down over time. I had to use a waterproof armband whilst I showered or bathed to keep the line from getting wet. My skin got slightly dry from where I wasn’t washing it properly. I would shower then go over the area that was covered with a wipe. I had to have this throughout the whole of my treatment. The whole 9 months.
The next set of chemo was given to me and all the drugs were taking their effect. The pain relief for the headaches and all the other drugs being pumped into my body was a bit of a shock. I had never been this ill and my body was just getting used to it all.
Over the weekend, I can’t remember when, I met a nurse called Keeren, she was lovely and knows how to talk to people. She could answer my questions and I felt comfortable speaking to her.
The next day, Sunday 31st March 2019, was mother’s day. I felt so guilty it honestly broke me knowing my mum had to spend this day in hospital. Okay she didn’t have to but of course she chose to. Unfortunately the chemo had started to take effect and I was feeling nausea with it. I was consequently sick and I knew my mum didn’t like the idea of vomiting. She stayed outside whilst Jack helped me get through the sickness. I’ll never forget telling him “I’m gonna be sick” but the sick bowls were right over the other side of the room. Jack must have some sort of superpower because I thought my sick was landing on the floor in front of me but he caught it in the sick bowl. Absolute legend. At the start I could only eat certain foods. I could only have fruit that could be peeled such as oranges, bananas. If I was feeling adventurous it would be mangos and pineapples. I had to be careful with yogurts and make sure they weren’t ones like Yakult’s that had a load of bacteria in them. (The bacteria could make me ill). Things had to be packaged. It didn’t affect me too much to be honest but in my eyes it was another small thing that added to my long list of restrictions. I didn’t like being restricted but I knew it was for the good.
Anyway after this small ordeal I told my family I needed some time to myself. Scott and his family came to visit so I let them stay and chatted to them. It was good to see them and see my nephews. I was able to give Shyloh his birthday present. He really enjoyed it because it was all about space.
They left and Jack came back with Dean and Danielle. Jack had had Chinese and Dean and Danielle had been to the Miller and Carter. I was so jealous of their food. It was good to see them as it lifted my spirits a bit. Dean and Danielle are two amazing people and the four of us click really well. Their daughter Tammi brightens any space she walks/runs/tumbles into. And now they’ve got a second ray of girly sunshine on the way! I’m so excited!
Monday came about and it was chemo for the next three days. The chemo made me sick again. My body was getting used to all the tablets and stuff. I was still having transfusions. And salt tablets. Yuck. Hate salt tablets.
Hannah came round on the Wednesday, my last day if chemo for that week, whilst Laura was there and I was sick in front of her. I didn’t want to be but I don’t think she thought much of it. I felt better after being sick even though I hate it. Other than that it was nice to see her and everyone else who came to see me. My supervisors from work came to see me. It was great knowing how much support I had around me. It definitely helped.
I was then off chemo until the next Monday. My blood count still didn’t stabilise and I had a reactions to the platelets. Dad and I watched the Grand National on the Saturday. We placed bets. Dad’s horse came first. Mine came second. It was a good race and a good day to spend with dad. Mum had a cold so she couldn’t come down over the weekend.
Mum came back on the Monday when I had my next set of chemo. We were trying to watch Back to the Future but for some reason I was in pain. The pain had started in my hip on the Monday morning and got worse over the day. Kerry and Ryan from work visited whilst I was dosed up on oral morph. But that only worked once and then the pain in my leg grew. I found it better to move about rather than lying down but it got to a point where I couldn’t put any weight on my leg so I just laid down. The doctors gave me a shot of morphine and a sedative. I was so out of it. They then put me on a machine where I could press a button and it would give me morphine when I needed it. I liked to call it morphine-on-tap.
That lasted throughout the night. I felt sorry for mum having to deal with it as she stayed really late. Jack came back and had to deal with it throughout the night.
The next morning I was still on the morphine pump. The pain had gone in my leg and it just felt stiff. The pain had moved to my arm and they took me off the morphine and put me on tramadol.
The doctors said the pain was due to the amount of white blood cells I had produced which was caused by the tablet chemo, Atra. The treatment was meant to get my white blood cells back up to its normal count but too many white blood cells can cause that pain. So they took me off of the Atra and put me on another tablet to reduce my white blood cells and regulate it all. It was all a lot of change but it’s all part of the journey. I said to the doctors at the start, before I was diagnosed that I don’t care what they do as long as it gets me better. Put me on whatever treatment, whatever medication for however long. Just get me better. Fix me.
I had a few work colleagues come and visit me a bring me goodies and cheered me up. It was nice to know they hadn’t forgotten about me and that they didnt care what i looked like! (Or at least that’s what I thought!)
The doctors had been talking about getting me home on the Tuesday but that wasn’t going to happen. My body still wasn’t stable.
The next two days went by. I had a few more visitors. I met a lady from a charity called Clicsargent on the Wednesday. I had been referred by Keeran because I was under 24. She was nice as well. She talked about how they can support me as a young adult as I’m only 21.
I think I’m a mature 21 year old compared to other people I know of my age. Most 21 year olds are still at uni or have a job but not a career. Still I have a young mind that thinks of the craziest things so it’s good to have them to talk to.
Then I was back on the chemo on the Thursday. They gave me anti-sickness before and it went okay. The chemo makes my blood counts drop including the platelets so I had to have another transfusion. This time I had quite a bad reaction that lasted through the night.
It just seemed like one thing after another. I couldn’t have a normal day. I was getting constipated from the pain killers so they had to give me laxatives for that which were awful. They made me feel sick too because I had to drink it. The laxatives started working eventually so I was back on track with that and was off the strong painkillers.
I was still off of the chemo tablet, the Atra, which was causing me the pain.
The doctors at the start said I was neutropenic which basically meant I had less neutrophils, which fight off infection, in my blood than usual. This meant I couldn’t go out of the hospital or, in the very early stages of staying in hospital, even walk around the hospital corridors. But it eventually got better and I could start taking walks down to the cafeteria. The corridor leading to my ward from the main part of the hospital was very long. My family gave it a name called “the orange mile” (because it had orange walls and was very long). The first time I walked this I was out of breath. I had been sat in my hospital bed for a few weeks and the furthest I had walked was to my bathroom and back, which was only a few meters from my bed. I became a bit teary. It hit me how unfit I had become in a matter of weeks and how much I would have to do to get back up to the level of fitness I was at before I started to get ill.
I then had a few good days, as good as it can get in hospital. On Wednesday 17th April 2019 the doctor came in to do their daily check and said I was allowed out for a few hours. As soon as he said this I was in tears purely due to how emotional it was to hear that. It meant I could get out of those four walls and, most importantly, I was improving.
So we went to Black Park, me Jack Laura and Mum. We had a nice walk and enjoyed the fresh air. It was the Easter holidays for the schools but it was okay. It was nice to see other people enjoying life in the sun.
I had my chemo again on the Thursday. I was really getting sick of the four walls now and the constant flow of nurses and doctors and other hospital staff coming in and out of my room. I just wanted my bed and peace. At the time, I will admit I wasn’t that annoyed with it because that’s what I had gotten used to however I eventually lost my shit and now I realise that was the reason. I lost it because I was told I would have to move to a bay which I would share with another person. This doesn’t seem too bad but when you’re in hospital and that’s the only thing happening in your life its hard to focus on other things. A few aggravating factors I think were:
1) I hadn’t lost it yet, I hadn’t got angry. I had been upset and confused and emotional and maybe slightly frustrated but not full on “I want to destroy everything in my path” angry.
2) Simply, the doctors said I would be in that room I had first been admitted to until I got out. It was a shock and had got used to my safe space. I didn’t want to share a room with someone else. And I know this sounds bad but she was elderly and I wasn’t in the mood to make friends but I didn’t want to be horrible.
3) Jack had stayed with me every night since I had been admitted so I didn’t know what I was going to do without him because he wouldn’t be able to stay whilst I was sharing with another patient. Maybe I had gotten used to relying on him too much. Maybe I had gotten lazy. Or maybe I just didn’t want to let him go that easily. He was and always had been my first shoulder to lean on when I needed it. He was literally my other half and I didn’t know what I would do without him.
I wouldn’t have mind usually but mentally I just wasn’t ready.
So they moved me out of the room. I went out for a few hours after my chemo and then Jack brought me back to the hospital. I cried all the way there. I cried when he left. I cried halfway through the night when I couldn’t sleep because it was too hot and I was having bad dreams. I cried in the morning knowing I would have to wait for him to come back at 9.
However he did come back and we had the whole day together. We went back to the house and I chilled out pretty much all day. When we came back to the hospital they had moved me back to my own room which had become available during the day. It made me so so happy because Jack could spend the night with me again. And he did. And he did the next night. But the pull out bed was as he described like “sleeping on a bed of nails.” I felt bad for him. Worst thing was he had already had a taste of our bed at home after 3 weeks so to sleep on the pull out did not do him any favours.
On the Sunday, Easter Sunday, I went home and had a shower at home. It was lush. I spent some time with Jack then we went to my parents for Sunday roast even though it was 26° outside. It was a good meal though. I went for a walk as well. My first proper walk I would say. It was great to spend the time with the family, I loved every second of it.
Jack and I had an argument that night. After such a lovely day. It made us both upset. The argument stemmed from a conversation gone bad. I personally think neither of us were in the right mind to have that conversation. He didn’t help and I think he knew he was in the wrong. We spoke later on in the evening. Jack sneaked into my room from the car park and we talked. He went home to sleep and he went to clear his mind a bit. We had already agreed in the day before the argument that he would sleep at home. He had spent quite a few weeks on the hospital pull out bed so his back was written off. He needed the time away from the hospital. I needed some time to myself. Neither of us slept much that night.
I then didn’t have my chemo until the Tuesday because of the bank holiday. I was meant to be going home that Tuesday but that didn’t happen because of my stupid white blood cells. They couldn’t sort themselves out. So they kept me in hospital doing the same stuff waiting for my bloods to stabilise. They reintroduced my ATRA and eventually it worked after another week messing around with doses. My white blood cells behaved themselves and I was able to go home on Thursday 2nd May 2019. Exactly 5 weeks in hospital and 5 weeks too long for my liking. But I know it was all for the good and I’m glad my body and the doctors were able to sort it out.
Thursday 28th March 2019 I was diagnosed with Acute Promyelocytic Leukaemia.
That morning I woke up at 0530hrs to go to work as normal but decided something wasn’t right and that I needed to go to A&E.
Back track about two weeks before hand I had started developing random bruises over my body. They didn’t really hurt but they were purple and looked quite nasty. I thought these were from work and my job role can be quite physical but I would wake up in the morning with new bruises in random places like my inner leg or inside on my arm. All I had done was slept through the night. I knew I could sometimes bruise easily but I had never experienced something like this.
On the Sunday/Monday before my diagnosis I developed a sore throat and mouth ulcers, which were more like blood blisters. These could be painful and again there was no obvious reason for developing them.
I had been suffering with some other bleeding which I had been referred to the Gynaecologist for. But my referral wasn’t until May and all these symptoms together made me worry.
On the evening of Wednesday 27th March 2019 I googled my symptoms, the sore throat, the mouth ulcers and the random bruising. Now I know they say not to Google your symptoms but like I said before it was all too much of a coincidence. I had a gut feeling that this was something more than just a sore throat and a few bruises.
So I typed my symptoms into the NHS website. It came up with three possible options. Two of them, which the website said was least likely, was diabetes and anaemia. The other one said it was roughly 80% likely I had Leukaemia. I didn’t jump straight to conclusions at this point because apart from a sore throat and a few mouth ulcers I felt fine. I had been to work the day before, my appetite was fine, and I was fine as far I was aware. Plus the internet always says you’re dying if you type in the most minor of symptoms. Still I was a little worried.
That morning I went to A&E I had a huge mouth ulcer, probably the size of a 20p coin, on the left side of my mouth and it did hurt along with the bruises and sore throat. I messaged my sergeant and my friend, Kerry, on my team stating that I wouldn’t be in and asking how to call in sick as I hadn’t had to before. My sergeant at the time, Steve, was really supportive and asked me to call him to get more information.
My boyfriend at the time, Jack, said he would take me to A&E but had to go to work. I got to A&E around 0600hrs. By this time I had called my parents, who live in Basingstoke asking if they could come and meet me. I was perfectly capable of making my way through the hospital but again I had a gut feeling something was wrong and I wanted someone to be with me, mainly because I knew I would have to have needles stuck in me and this is one of my main phobias.
I called Steve and he passed me onto Kerry as it was easier to explain everything to her. They asked if I was with anyone and I said no because Jack had gone to work and my parents were making their way down from Basingstoke. Steve said he would make his way down with Kerry and they got there not long afterwards.
My mum had called Laura, my older sister, who was going to work that morning. I did initially think of calling her but I didn’t want to disturb her as I knew she was always busy at work and I didn’t want to cause her any hassle. Laura arrived shortly after Steve and Kerry. By this point I had had my bloods taken and was waiting in A&E for a doctor to see me. Steve and Kerry waited for my parents to arrive and then left once they were happy I was in capable hands. Steve and Kerry both said to keep them updated which I did. I was taken to a bed in A&E and my parents and Laura followed. The doctor stated I had low blood counts and they were getting the haematologist to take a look at the results. A doctor, Dr Edmund Watson (Dr Ed for short) came down and stated very simply I was lacking certain blood products in my blood such as platelets, haemoglobin and white blood cells. So, again very simply, my immune system wasn’t working very well. Now that I think about it this would have put me in a very dangerous situation. Especially with the job I do. I encounter people with knives and all different types of diseases. If I had been stabbed or caught something off someone, I would have been in big trouble.
One of the doctors, who would eventually become my consultant, Dr Philpot, also came to visit me and gave me a list of options of what the blood results could mean but they would need to do a few more tests and keep me in for at least the next 24 hours until they got the results back. She stated in the list of options it could be leukaemia. This wasn’t too much of a shock but so much had already happened within the space of a few hours that I began to cry as I didn’t have a clue what was going on. I thought at most I would be given a few antibiotics and have a few days off work. Not have my life completely turned upside down in the space of a few hours.
But it wasn’t a confirmed diagnosis. Still the doctors took me for more tests including a standard chest x-ray and urine sample. My dad called my brother Scott and Jack saying they should probably get down to the hospital because things weren’t looking great and I had been told I was going to be admitted.
After the chest x-ray and urine sample Dr Ed took me to a small room in the Eden Day Unit, the unit for patients receiving chemo and other treatments. I remember walking in there and seeing patients hooked up to IV drips sitting in chairs. Some had head coverings and looked very ill. I knew it wasn’t a place I wanted to be. I remember saying to Laura that all those patients sitting in those chairs were getting chemo. My parents had gone to get a drink and take a break whilst Laura stayed with me. Beofre I could even start to process what I had already been through Dr Ed said he wanted to perform a small procedure by taking part of my bone marrow out of my spine. He talked me through the whole procedure. I already knew a bit of information on the procedure as I am signed up to the Anthony Nolan foundation as a donor, a charity set up where people donate stem cells and bone marrow to people who need them, including people with leukaemia. This I think was around midday so I was getting a bit tired but just wanted to get everything over and done with. Dr Ed then started the procedure before my parents got back and bless my sister Laura who was right there to hold my hand whilst Dr Ed stuck a huge needle in my spine.
He said it would hurt and I could scream and swear if I wanted to. I thought I would probably shout a little but bloody hell it was the most excruciating pains I had ever gone through. Dr Ed had to put local anaesthetic in which felt like a horrible bee sting. He had to do this a few times so I wouldn’t feel any pain with the needles, just ‘pressure’. I would just feel pressure. The worst part was when Dr Ed had to take liquid from the bone marrow first and then with a second needle take a small piece of solid marrow from my bone. This is when I screamed and swore. At this point my parents, Scott and Jack were outside and could hear me screaming in pain. I knew they were finding it hard to listen to me without being able to do anything but like I said before I just wanted to get the procedure over and done with so I could be in pain for a shorter amount of time. The procedure probably only took 30-45 minutes. I had to lie in the same fetal position this whole time and couldn’t move. In this time I had gone from feeling faint to feeling sick to feeling fine and the emotions just kept on rotating depending what was happening. Dr Ed kept saying I was strong and an absolute legend for going through the procedure without having to stop.
Once the procedure was over I had about 15 minutes to myself with just Dr Ed and Laura in the room to compose myself before seeing the rest of my family who were waiting outside. I was aware they had just heard me scream in agony but asked to wait until I was ready to see their worried faces. Dr Ed went out and reassured them I was fine whilst I caught my breath.
Once I was ready I said they could come in. After going through such an ordeal I was just happy to be able to cuddle them especially Jack. I could see he felt guilty as he had left me at A&E that morning, not having the slightest clue I could have leukaemia and have to go through the bone marrow procedure.
They then took me to Room 1 in the Eden Ward at Wexham Park Hospital where I would spend the next 5 weeks. They started me on medication straight away including transfusions to boost my blood count whilst taking precautions before receiving my results from the bone marrow which had been sent off to a lab in Oxford for further tests.
Mum called Jodi, who at the time was in university at Loughborough, saying she should come down because it was getting more serious. She drove down from Loughborough to Basingstoke which is a 3 hour journey. My dad then left to pick her up and bring her back to the hospital so there wasn’t so many cars there. It was during that time that I got diagnosed.
Around 1700hrs Dr Philpot and a nurse called Ivana entered my room and gave me my diagnosis. Naturally I started to cry but I was still alive. I hadn’t been given a terminal diagnosis. I was still breathing with my family right beside me. My head was spinning with questions and Dr Philpot explained very briefly what the next steps would be. I had a few questions but one of my main thoughts was just to get through the next week of treatment as they were starting me on it straight away. Dr Philpot explained this Leukaemia was a very rare form however one of the most treatable by being 80%-85% curable. The treatment they were starting me on was the most successful but I was reassured if this one didn’t work there were other options. I was told I wouldn’t lose my hair and the side effects of this chemo were slightly different to your standard one that everyone hears about. My chemo would encourage the good cells to grow and mature. It would also kill off the bad cells but its main aim would be to grow the good cells and help boost my blood count. They mentioned fertility as well but again my main aim was to get better and get out of hospital then I would worry about the other stuff further down the line.
Dad and Jodi got to the hospital not long after my diagnosis. Someone went out and told them. They then came in and I can’t really remember the rest of the evening.
I wish it was just myself in the room when I was given my diagnosis. Just me, Dr Philpott and Ivana. I know it couldn’t be a planned thing but I had to deal with my emotions whilst seeing everyone else react. When we all started crying my mum and Laura came up and gave me hugs. This was nice. I’m not complaining but I was still in shock and they were smothering me with their love. I just thought maybe give me a minute?
My family stayed until after visiting hours and I had to have a few transfusions so I didn’t get much sleep. I was told Jack could stay with me each night and they bought him a pull out bed. It’s not the comfiest thing but I could hold his hand at night and I knew I was always with him.
My advice to anyone going through leukaemia or chemotherapy. Especially for the younger cancer patients out there.
It’s okay to say to someone “leave me alone” or “can I have a few minutes to myself”. People will understand that you need time to yourself but they wont know when. You’re the only one that can decide that. You have to be selfish and think of yourself. Your family or friends have got each other to talk to because, even though your experience will affect everyone differently, they are all in the same position. You on the other hand are the only one with the cancer. Don’t feel like you have to look after them and you have to console them. So take advantage of it. This is your journey; your experience. It is your life. It’s up to you how much you let fucking cancer control you.
On the same note the doctors obviously have the medications and the scientific knowledge to fix you but I think what helped me recover quicker was my positive mind-set. I tried to keep a positive mind-set as much as I could.
I had a lot of friends and colleagues visit me in hospital. Bringing me magazines and food and bits to do. My sisters decorated my room and I had a board that I could put letters on to make up quotes and stuff.
My top tips for if you’re going into hospital would be:
Have a blanket, either a favourite one or a fresh new one because the hospital sheets are horrible and smell weird.
They don’t hand out crisps, sweets or chocolate so stock up on that!
Get some new pyjamas, some warm ones and some summer ones. Some days I would be warm some days I would be cold.
Take loose fitting clothes. Ladies don’t worry about bras, let them be free!
Have a simple pair of slippers you can slide on and off. On the same note have a simple pair of flip flops in case you have to go/ be taken to another part of the hospital.
Books, magazines, arts and crafts are going to get you through it. Even in the day unit I would take something to do.
My “thank yous”
I would like to thank Wexham park hospital, especially the Eden Ward, Eden Day Unit and the Haematology department. My treatment was 5 star with a few small bumps but I couldn’t ask for a better group of staff.
I would like to thank my family who have been amazing throughout the whole of this. They have given me so much support I honestly couldn’t ask for a better family.
I would like to thank Jack, who was my partner in crime and my absolute world.
I would also like to thank my friends who have accepted me at my worst and helped me get through it.
I would like to thank my colleagues. I had only known them for 3 months before being diagnosed but it would seem I had been part of the team for years he way they supported me.
And finally thank you for taking the time to read this. Hopefully it will reach other people seeking advice for APML or teenagers/young adults going through cancer. You are not alone. There are so many organisations out there to help you, sometimes you just have to do a bit of digging. There is always a silver lining. Everyone’s treatment and diagnosis is unique to them so find something that works for you.