This blog post is my story, I’m not writing it for attention or pity, I’m writing it to share my story, help others, help others understand and I suppose answer some people’s questions. it is perfectly normal for people to be interested in my story and any questions I will answer, I’m a very open person and won’t be offended by any question you may want to ask me! I’m not going to hold back with my story either, I will tell you everything, the truth and not sugar coat things! One of the big things I should tell you too, is that I never once looked or felt sick before chemo, apart from the lump I had no indication there was anything wrong with me!
Hmm so where to start? July 2011 I was diagnosed with non-hodgekins lymphoma. This is how I got to this stage. I think I’ll have to split my story into a few parts as you’ll be reading forever if I don’t. I apologise now for the length, I really didn’t realise how much I went thorough in this part one alone. So get a cuppa and get comfy, you could be here for a while!
For a couple of years I had a small lump on the right side of my neck which would have appeared after I had a sneezing fit (when I say a sneezing fit, I never sneeze just once, I uncontrollably sneeze about 6-7 times in a row at least), it wasn’t sore and would have gone away just as quickly as it came. So I never thought anything of it, it was small and I thought that maybe I had pulled something when sneezing. I remember asking my GP about it and they agreed and said it could also just be a gland. I pretty much just forgot about it and when it rarely did appear I didn’t think anything of it.
This brings us to January 2011, I bought a fake tan that was on offer and had really good reviews (I can’t for the life of me remember the name now). I think I must have been going out somewhere so applied the tan as usual, the next day I woke up with like a prickly heat looking rash all over my body, especially on my chest. I just assumed I had taken a bad reaction so I washed off as much as I could and took some anti histamines. After a couple of days the rash started to disappear, but it look longer on my chest and especially the dips of my neck at the collar bone. So I ended up after a couple of weeks going to the doctor who gave me more anti histamines and hydrocortisone cream for it. This didn’t work, I also stopped wearing perfume, tan, scarves, necklaces, anything that could be irritating my neck, but again this made no difference. It was weird because the rash sometimes would start to fade but then for no reason anyone could pin point it would flare up again. At times it was that bad it would have been red raw, warm, itchy and sometimes oozing so I had to cover it with gauze. Along side the rash, when it flared up the lump I previously told you about would flare up too and get bigger, when the rash went down the lump did too, but never disappeared as it previously did. This went on for months, seeing my normal doctor, the other doctor in the practice, locum doctors, chemists, anyone really who I thought could help but the doctors were rubbish and did nothing. They kept telling me the lump was just a gland (out of all the doctors only one actually felt it to examine it) and kept telling me to take the anti histamines and apply the cream, at this stage the cream had started to burn through my skin and I had very few layers. I even got tot the stage I asked my GP for a skin allergy test to try and figure out what it was, but he told me I couldn’t have one because it was only for very severe cases like someone who has been admitted to hospital for a nut allergy. Then FINALLY I seen a locum who listened to me, she felt the lump, examined the rash and said she was 99% sure was just a gland but she wanted to do tests just to make sure (unfortunately thinking nothing of these tests and after seeing so many doctors I can’t remember her name). THIS IS THE DOCTOR WHO POTENTIALLY SAVED MY LIFE.
If you look carefully you can see the rash on my neck, it wasn’t too bad here.
So this would have been a out May time I booked the day off work and had my appointment in the morning for an ultra sound scan on my neck at the Ulster hospital. I was so nervous, scared and felt sick, I hate hospitals and had a gut feeling something just wasn’t right so my mum took off work and came with me. Where I had to go for the scan was right beside the MacMillan area so that was like wow omg this is bad! I remember sitting with mum, her making small talk trying to distract me and all I could think was what is going to happen to me? Finally my name was called and I went into the room with the man who’s job it was to do all this stuff, again I can’t remember his name or the official name of the job he did. I lay on the bed and tried my hardest to hold it together as he scanned my neck, then just as I was waiting for him to say it he told me he wanted to do more tests I can’t remember why he said he wanted to because I just broke down, my worst fears were coming true. As he went out to the waiting room to get my mum I lay on the bed, looking at the ceiling crying and talking to my papa, asking him to be with me and for help, pleading that it wouldn’t be bad. A lot of people may pray, but I don’t believe in God and always talk to my papa who is my guardian angel after he died when I was 16.
Mum came in as did the doctor again, he explained he wanted to do more tests and wanted to get a biopsy. This was me wailing now, I have to tell you I am phobic of needles, I can’t even explain how bad I am, so this was the worst news possible! I thought he was going to say I’d have to come back another day and get put to sleep for them to do this, but no! He wanted to take me into another room there and then to stick a massive great big needle into my neck to do the biopsy. At this stage I’m sure half the hospital heard me, I was sobbing, wailing, felt sick and found it hard to breathe, all of this because of my fear of the needle. The doctor was very good and understanding, not like most other doctors who would have laughed it off and called me stupid. I didn’t want the biopsy done but he explained to me that he needed to and comforted me. He then went and got me ‘magic cream’ there is a technical term for it but surprise surprise I can’t remember lol, this cream numbs the area. He applied the cream and I had to go off with mum for a bit until my neck went numb.
We returned about an hour later, this was one of the shortest hours of my life. I went into the room with the doctor and two other lovely nurses to hold my hands, I think it was more like pin me down too. I had to lye on my side and the doctor scanned my neck as he stuck in the needle so he could see where it was going. Even with the numbing cream this was so sore, I can not explain, I remember lying sobbing, trying to stay as still as possible and gripping the nurses hand. Once finally over, which felt like forever he placed a small plaster over my neck, I swear tho the needle felt as thick as a biro! He then took mum and I into a little room and explained that the biopsy would go for testing and I would get the results in two weeks from my GP. He also asked if we had any questions and I remember the one I asked was is it cancer in your opinion? He said that he was 99% sure it wasn’t because cancer doesn’t get bigger, then smaller, it would just keep growing. So this did kind of put me at ease. it was strange too because after that scan and needle biopsy my rash completely went away and has never returned! Mum always said it must have been my body’s way of saying “look here, look at me, there is something wrong!”
Those two weeks were the longest of my life I had a gut feeling they would be bad, even though everyone around me was staying positive I knew in myself something just wasn’t right! It actually took longer than two weeks to get the results, it ended up being 18days! Finally I found myself in the doctor’s waiting room, surprise, surprise they were running late. I sat by myself (I went alone because everyone told me I’d be fine) I felt so sick, weepy, clammy hands, faint, a bit of a state really. Finally when the dr came and brought me to his room, he sat me down and said the results had come back, but they needed to do more tests. I said what was it, “was it cancer or hodgekins?” But he wouldn’t tell me, wouldn’t even really look at me, just said well if it is that, you’re in the best possible hands. At this point I broke down properly and started crying, he asked me was there anyone with me, to which I replied no so he said could I ring someone (we live in the next street to the doctors) so I rang my mum on my mobile. I was that upset I asked him to speak to her, he asked her to come round because I needed her and I was pretty hysterical, yes HYSTERICAL. I couldn’t believe it I was upset yes and crying but I was definitely not hysterical! He said to me if I sat outside he would take his last patient and then speak to mum and I. I went outside and sat on the chair alone for a few minutes before mum arrived, I was crying and had to try and tell her what was happening. We waited outside and mum tried to calm me down, I kept saying “mum I’ve got cancer, it’s cancer, what am I going to do?” She tried to calm me and said “look let’s just wait and see what the doctor has to say.” When we went back in he once again didn’t say a lot, exactly what he had said before, that I needed more tests and that if it was cancer I was in the best possible place, but he wouldn’t look at us, just looked at his computer screen.
Once we left I freaked out again at the thought of blood tests and needles, so I text my friend and got the number for a hypnotherapist she recommended. I rang them and luckily they were open late that night and could do the two sessions at once £160. So I had dad take me up that night, I couldn’t wait, I didn’t know when I’d get told to go for the tests. The lady who did the hypnotherapy was lovely and it went really well, she gave me coping techniques and I was amazing at how I could look at and hold a needle and even have it stuck in my hand. This all happened on the Tuesday.
I got a phonecall on Wednesday saying my appointment was on Friday morning at Newtownards hospital, I’d be having a blood test and meeting Dr El Agnaf ( I hope I’ve spelt his name right), a haematology consultant. Not knowing what they thought was wrong with me I turned to google and had to look up what it could be, I couldn’t hold myself back any longer! Research told me it would either be hodgekins lymphoma or leukaemia. Friday came along, I practised the exercises I had been taught during the hypnotherapy and went in for the blood tests. I thankfully didn’t have to wait long when a lovely, friendly looking nurse came and got me, I had to go into a little room to lie down and get my blood taken, I told her I couldn’t look at the needle and needed my dad with me. She was really understanding and said “right so we’ll be testing for hodgekins”, to which I replied “are we?” She was really shocked that I didn’t know and my GP hadn’t told me or talked to me properly, and reassured me that Dr E (as I call him, easier than trying to spell his name) would explain everything.
I didn’t have to wait long before I was seen by Dr E,. Mum, Dad and I all went into his room and sat down. He talked to me and said that they were pretty positive that I had a form of hodgekins lymphoma and that the blood test and other tests would confirm more. From what I can remember he explained about it and that there was two types hodgekins and non-hodgekins, the tests would also determine what one I had. He then asked to examine me, I felt around my glands in my throat, my neck, the lump on my neck, my armpits, my stomach and my groin. I didn’t really understand why until he said that those are the main areas the lumps would be found and that they could have spread from my neck. This scared me as it had taken so long to be detected that it could have spread all through my body! He also asked had I had any symptoms, the ones I can remember him asking me were, night sweats, very tired, and loss of appetite. The only one I had was tiredness but I was working 3 jobs and doing a lot of exercise. I’m sure there was probably more talked about at that first consultation I can’t remember, but I do remember him saying the other tests would involve a CT PET scan and an operation to remove as much of the lump/lumps as possible and send them for a biopsy. I was either going to get a phone call or a letter when it was scheduled, it was probably both actually. It was so strange walking out of the hospital after that. I was relieved, assured everything was ok and said to mum and dad, it’s ok, I know it’s going to be ok now.
I can’t really remember the order of this next bit, I think I had the op and then the CT PET scan, I could have it mixed up but this is the order I’ll write it in now. So I got the letter giving me a date and time for a day procedure, again at Ards hospital. I remember being so, so scared, not knowing what to expect and having the fear or hospitals, injections and drips again! Mum was doing her best to try and distract me and lighten the mood and I remember just snapping at her and probably being really horrible, I was just that scared and agitated that she just wasn’t helping me, I don’t really think anything would have. I kept saying that I was fine, I didn’t want this anymore and could I just go home please? Of course the answer to that was no, and as much for myself I didn’t want to go in at that time I knew I had to do it for my family, my boyfriend and my friend, I was doing all this, doing what I was told for them, even though I would have happily just run away. However that is me, something bad happens and I want to bolt, run away and just pretend it never happened.
I remember going and checking in at reception and being shown to my room, being asked to get changed into a gown, you know those lovely ones that you are left freezing and embarrassed in because your backside is on show to the world and the thing is so drafty! They also asked me to get into bed and gave me a diazepam to try and calm me down, I think they could see how I was and Dr E had made sure that notes about my needle phobia had been passed on. I think I had to lie for a while before the surgeon and I think a student doctor came into the room to discuss what was going to happen, even though surprise, surprise I told them I didn’t want to know and would just sign the paperwork if they gave it to me. I think mum and I must have watched some bad morning TV, because mum couldn’t reach the TV properly to change the channel. I remember being taken down to theatre a short while later, it was so weird, I wasn’t allowed to walk (even though I could) I was wheeled down in the bed. Ugh it was terrible, really got a bit of motion sickness, it felt so weird and I wasn’t able really to sit up so I had to watch the lights on the roof moving past as I went to the theatre. When I got there it was pretty basic from what I could see and this strict looking and sounding woman told me to move to the other bed and lie down. They said they wouldn’t out the needle into my hand while I was awake that I would have a mask put over my face, to inhale the gas, deep breaths and to count backwards from 10.
Next thing I knew I had woken up back in my room asking for my mum. I was really groggy and felt quite sick, I was told this was because of the gas. I also felt this terrible pain in my hand every so often, I looked down and it was my worst fear, one of those cannulaes in my hand, the sorest flipping place they can ever put it can I add. to top it off they had put the blood pressure machine on this arm so every time it went off and tightened the pain surged in my hand. I kept asking the nurse who was looking after me could she take it out, I swear I must have asked about 20 times on many different occasions, but she always said no, it had to stay in until I went home. Although they were nice enough to swap the blood pressure machine to the other side and I hid my hand under the blanket they had given me because I was freezing, so I could try and forget about it. Mum came back and I tried to sleep I would doze for about 5 minutes and then wake again, he nurse kept telling me to sleep because it would help me get over the effects of the gas, but that was easier said than done, all I wanted to do was go home! I wasn’t allowed to leave until I wasn’t as groggy anymore and I could eat some toast and drink some tea. It was ages before this happened I just felt so queasy. It was so stupid at one point too, because the nurse came in at one point and asked how I felt, I said my neck was sore, meaning where I had just had the operation and she said, oh it must have been the way you were lying?!? I was just like WHAT?!?!? to mum, to which I think she just rolled her eyes.
FINALLY I could go home, I think the first thing I did was look at my neck in the mirror there was a long slice about 4cm on my neck with sterystrip stiches on it, and it was closed up really well. When I got home I went straight to bed, I remember Dad coming over but not much else of that night, I think my boyfriend must have come down too or maybe it was the next day? The next day I had planned on being back to work but I was in agony, every part of my upper chest, back, throat and neck hurt, I could barely breathe with the pain. I remember either my cousin ringing to see how the op had went or maybe my mum rang him (he’s a pharmacist over in England and just before I had went before all these tests and found out about the cancer, he had finished his rotation on the cancer ward so knew loads about what would be going on with me etc). It was so funny, and I’m sure he probably thought I was mad because I told him how sore I was and said I think they dropped me, they must have dropped me on the floor or sat on my chest because I feel like I have been hit by a truck, I cant breathe! As the days went on and I slept more thankfully the pain eased and I could breathe properly.
You can see the stitches in this pic
Going back to work after the weekend I was lucky that my hair was long enough that I could cover my neck and thankfully wasn’t asked too many questions. There was only about 5 people in work who knew what was going on and they were amazing, told me to take it easy and if I needed to leave early to do so. School must have finished for the summer holidays by the time I got the letter for my CT PET scan at the Royal. The letter said to ring and confirm the time and anything I may need, so I remember saying I needed magic cream if I had to have an injection, which I did so I had to arrive an hour earlier to the scan, and I was nil by mouth from 9pm the night before.
The morning came, once again I was scared, worried, on edge, ready to cry, and really didn’t know what to expect. Dad took me this time. We arrived at the proper time and they put on the magic cream and left me to wait out in the waiting room. When I say magic cream, I can’t remember the actual name of it but it’s a numbing cream (sorry if I have repeated my explanation of this). After about 45 minutes a nice, young, Australian nurse came out and got me, dad was allowed to come too. She weighed me, took my height, asked me some questions like when was my last period, had I any allergies and could there be a possibility I was pregnant. To which I had to say no and sign a form that I wasn’t, she also took my blood sugars. She brought me into my own cubical and left me to lie there for a bit, dad kept me company, then another nurse came in and put the needle or cannula or something into my arm (I looked away) and then a man with this metal bucket came in and gave the nurse the thing to go into my arm. I later found out this was radio active glucose which would stick to any cancer cells and show up during the scan. Oh flip how could I forget, I again had to get changed into one of those lovely butt on the show, drafty gowns, before the other nurse came in after I had signed the forms.
I now had to lie really still and quietly in the dark without my dad for 45 minutes, I had brought my ipod with me and was then told no fast music etc, thankfully I’m a bit of a geek and well lazy and had downloaded ages ago some audiobooks. For the first 20 minutes though I’d say, I just lay there sobbing, I was so scared, I didn’t know what to expect, I was lying in the dark alone, I wanted my dad and I was petrified at what this scan would show, I cried so, so hard. I then started talking to my papa again, asking him to look after me, to be with me. Finally I calmed myself down enough to stop crying but not enough to relax like I was supposed to. Nurses were walking about outside my cubicle, other patients were being brought it, there was talking, I kept jumping every time someone went past, thinking they were coming for me.
After the 45 minutes the Australian nurse came and got me, I had to go to the toilet and then she took me into the room with the machine, it was freezing! She said it was so that the machine wouldn’t overheat. I had to lie on the bed bit that was pretty hard, she put a blanket under my knees, covered me with a blanket and then I don’t know tied/restrained/taped me down so I couldn’t move, the worst was having my head taped down too! She told me I wasn’t allowed to move, that it would take about 30-40 minutes, that she would be in the opposite room and could see me through the window, if I needed anything I was to wiggle my toes. Then what I can only describe as hell began! The bed moved back into this long cylinder tubed machine and moved up, so close to the top of the machine, it must have been about 5cm away from my nose. The nurse put on a cd for me, but I couldn’t hear it over the sound of the machine. I would be a little clostrophic at times but this was awful, I really had to try and distract myself from having a panic attack! The top was so close to my face, I was tied down, couldn’t move and the machine kept brushing against my arms as the bed moved forwards and backwards. There was also a crack in the plastic above my face and all I kept thinking was OMG I’m going to get stuck in this and how will they get me out!?!?! This was one of the longest times of my life and I was so cold and sore from lying so still, in the same position and on the hard bed! Eventually it was over and I don’t think they seen anyone get changed so quickly and get out of that hospital as fast as I did!
I think it was about 2 weeks before I got my results back and in the mean time I had a great distraction of free tickets to Oxegen, down south (a music festival), I brought 3 of my really good friends and we had such an amazing time, it was crazy to think I was down there, looked fit and healthy and I had cancer! There were so many amazing bands and artists that day, especially Beyoncé. When she sang I’m a survivor it was like she was singing it straight to me, it meant so much and I felt so strong listening to her singing it!
Oxegen with my girls!
Say about 2 weeks from the scan I got a phone call to make an appointment up at the Ulster hospital to see Dr E for my results at 3pm on a Wednesday. Dad drove up with mum and I and we arrived a little early, thinking we would be seen dead on 3pm. That wasn’t the case though! We sat around for ages, I was a total mess, I didn’t want to be there, I didn’t want to know! I sat inside as long as I could, in a waiting room full of people, trying to hold back the tears. My eyes catching those of strangers looking at me, trying to look reassuring and give me a reassuring smile. It got too much, I had to leave, to get outside, mum came with me while dad sat inside waiting for my name to be called. I kept talking to my papa in my head, begging him to let me be ok, not for it to have spread all over my body! Telling my mum I want to go home and her trying to reassure and distract me. Through the open window I heard my name being called . . .
Mum and I came back into the waiting room, met dad and the three of us made our way to Dr E’s room. He sat us all down and asked how I was. He introduced us to Joanne, his haematology nurse, basically his right hand woman, she was lovely, so nice and really friendly and such a reassuring smile. He then told me the results . . . Stage 1A non-hodgekins lymphoma, stage one because thankfully it was contained to the one area, my neck and A because was symptom free. He told me they had removed 4-5 cancerous lymph nodes and I think there was 1 or 2 left that they hadn’t got but they could get rid of through treatment. As soon as I had heard it was stage 1 I started crying, AGAIN, but this time tears of happiness and relief, my papa as always had looked after me! Dr E said I had 2 treatment options, radiotherapy or chemotherapy. With the radio, I think he said it wouldn’t be as aggressive but there was a chance that a few years down the line it could return, where as with chemo research showed it usually wouldn’t. So hands down I of course said I want the chemo. Dr E said he would get Joanne to schedule me to have a PICC line inserted so I wouldn’t have to constantly have needles and that my treatment would start the following Thursday. Joanne said I could come into a room and one of the other nurses would talk through the PICC line with me but I said I didn’t want to know anything and just wanted to go home! She said that was fine and gave me information on the treatment I’d be having (I think it was ABVD, I can’t remember), what the PICC line was and what the non-hodgekins was. As soon as we got outside I text my boyfriend, family and some of my close friends who had stuck by me and text me everyday since hearing what was going on. My mum rang my cousin (the pharmacist) and he said that was great treatment to get and was really effective.
Hopefully you are all still awake after that mammoth part one, wow I really did go through a lot! I found out who my true friends were, those who I could trust and who would stand by me no matter what! I will try my best to get part 2 to you asap! Part 2 will be my treatment up until me getting the all clear. Remember any questions please just ask!