1. From November 2010 until March 30th 2011

Hi everyone…

I'm trying to find the right words to start this blog journey. My emotions are all over the place but I want to share my experiences and keep a record of what I am doing how my treatment is going and how I am feeling, physically and emotionally - plus I want to start this now whilst the feelings of my diagnosis are still fresh in my mind.

I want to start with November – March 30^th as this is all the stuff that happened before my diagnosis. This will be a huge chunk to start with but once I get into blogging I will make my posts smaller (hopefully) and more managable for updates.

November 2010, Anthony and I were looking to buy our first house. It was a busy time, lots of house viewings, financial workings out, talking, discussing and looking. We were renting at the time at Apperley Bridge. We were there in the knowledge that our tenancy would end in Feb 2011 and by that time we would have found a house, and be ready to move. We were excited and really looking forward to living somewhere we knew would be ours and secure - i.e. not being moved on by a landlord which had happened in the August. (2010)

In the middle of house hunting I was experiencing pain in my neck, at first it felt like a muscle strain. One morning, a week or so later, I was getting ready for work and I was using a cotton ball with cleanser and moved down my neck. It felt so tender and when I felt it, there was a lump, about 2cm in diameter. I was alarmed and called work to say I was going to the walk in clinic at my doctors to get it checked.

I was really pleased when I was able to get seen to straight away - I was seen by a nurse practitioner - who examined my neck and then told me that it was a swollen lymph gland. My lymph glands were doing their job stopping infection getting to anywhere else in the body. The fact I had my tonsils out, also added to this, as the lymph glands are the next in the system to act against infection. She said it was just an infection and she prescribed me some antibiotics to help it go away. When I collected the tablets and got them home - there were 6 tablets. SIX? I had a feeling straight away that this just wasn’t enough. After completing the tablets there was no change, I still had pain and felt annoyed. I went back the following week and saw the same practitioner. She was adamant I was fine, took some bloods to be on the safe side, which came back normal. I explained I felt dizzy, tired and the lump was causing me discomfort. She said, there is a virus going round where you feel dizzy don’t worry, you'll be fine. After I left the doctors I felt like I hadn’t been listened to... I went back just after Christmas and saw a different doctor. She examined me and said without a doubt she would send me for an ultrasound.

In the meantime we had found the house we wanted to buy in Idle, Bradford. We had viewed it many times and had our offer accepted - we were so so excited! This was IT! Our own place to put our own stamp on and live together with our cat Zig. We got the keys early Feb and moved in on the 12th.

Feb 14th, Monday morning I went for my ultrasound at Eccleshill community hospital. I felt nervous and unsure. I was expecting a really lovely person to do the scan - but I felt like another number and another pain in the bum. The lady who did it wasn’t very sensitive and matter of fact, which did surprise me. I ignored this and listened to what she found. She said she could tell me what she had found on the scan, but not why and was quite firm about this, almost like she had a lot of experience of patients asking why, how and when. She was quite defensive and bolshy. I understood that she was simply carrying out the scan and that was it, but I didn’t see why she had to be so abrupt. She used some gel on my neck and chest and scanned those areas.

Thurs March 3rd, I went to the doctors to discuss the results of my ultrasound. By this point I was feeling quite positive, I was having a good week and focused on work, our home, friends and loving life. I went to the walk in clinic from 8am to see any doctor, it didn’t matter to me who I saw, as long as it wasn’t that practitioner I first saw. I wasn’t prepared for what this doctor would tell me. Even though the first practitioner had told me about my lymph gland was swollen I didn’t think anything of it as I hadn’t experienced any symptoms of anything serious and still felt it was an infection which needed more treatment. The doctor examined my body; arm pits, chest, abdomen, groin. She said she could feel my spleen was enlarged but there were no other lumps in other parts of my body - i.e. groin or arm pits. She read my results from the scan and told me that other lumps - were in my left side of my neck and in my chest. Because there was more than one, the doctor said she was concerned. I was still laid on the examination bed and she came back over to me. Reached for my hand with one hand and rubbed my shoulder with the other. I knew. She explained it could be lymphoma. Naturally, my heart sank and began to beat very fast, I had no idea what it was, I had avoided searching Google for lymph gland problems as I didn’t want to bombard myself with info or scare myself. The doctor went on to explain the lymphatic system ( - I will explain in my future blogs -) and how it works/ what could be wrong with mine. She told me it could be lymphoma or it could be an infection like TB (?) or Glandular Fever. She urged me to not worry and told me that she would be fast tracking my referral to the Haematology department which would take a week. If she wasn’t to fast track it would take 9 weeks!

Monday March 7th I got my hospital letter. I had to go to BRI for an appointment with a (specialist) Haematologist to discuss the next steps.

Wed March 16th – My appointment at BRI. The specialist was great, very thorough. She examined me again and talked about the possibilities. The same possibilities came up - TB, Glandular Fever, other infections which I can’t remember the names of!

She said she'd like to send for a biopsy. Was this really happening to me? You hear things all the time about people finding lumps and going for biopsys -  but this was being said to me now. The doctor rang through to the ENT dept- Day Case Unit, where I would go for the operation. They said I'd be able to go on the Friday for a pre op assessment and then go in Monday for the biopsy. 
I was starting to get a bad feeling now, it was all more and more real. A biopsy was a step forward, a step forward to knowing what is was and also a step forward to actually doing something about it. 
But, I still had hope - people at work and at home - Anthony especially, were all being strong and positive and even if they did have a feeling it wasnt good, they were staying strong for me. 


Monday 21st March I went for 7.30am to the day case unit. Anthony drove me there and waited with me until iI was called to go through. It was like a mini ward. I sat amongst other people who were waiting to be seen by the registrar. People had arrows drawn on them where they would be operated on. I had one drawn on me. Like X marks the spot! Anthony went home after this and would come to collect me later in the day. I waited, and waited and waited. I was starving hungry, anyone who knows me knows I love my food. (Grazing - James!) I was in true 'Lizzie coma'. My bed/trolley was opposite a lovely lady who had the same surname as me, all the doctors and nurses  kept saying was which Ellis, Sandra or Elizabeth. We chatted to each other and had a giggle. Sandra hadnt been in hospital since she had children and didnt know how things worked with going for surgery and waiting times. This was my third March/April in a row if being in hospital for surgery - 2009 - I had my appendix out, 2010 I had my tonsils out and now this.. so I have had a bit of experience with the workings of wards, surgery etc. We laughed with each other when we had to put our gowns on for surgery and she helped my tie mine as i was all over the place and nearly strangling myself!
The nurse came over and told us that Sandra would be going next and then it would be me, I was last on the list. It was 10am at this point. I would be going to surgery about 3ish. JOY. I summed up in my head how to feel, i figured I had waited this long and it was only a matter of hours and I would be in there. I decided to remain calm. ;)
About 1pm - I had been laid on my trolley bed, snoozing and I could hear my name being mentioned. I sat up.. was it me already? The nurse came over and explained that I had been moved up the list because I was higher priority than Sandra. I felt relieved but also terrible that I was being moved up and Sandra was the one who would have to wait now. Sandra was absolutely fine about it and accepted it. I went to surgery. The nerves kicked in as I laid down and the nurse started to put the heart monitors on me, and write on my wrist band ask me the usual questions - am i allergic to anything, whats your date of birth, what's your favourite film of all time, not really.. :)
The anaethetist put a plastic breathing mask over my mouth and nose and started to try find a vein for the general. Hate this. Hate Hate needles. As I type my legs are jiggling and my knees are weak. blah. I was out pretty quickly, the general was strong and I felt it go all the way up my arm and round my body, stinging slightly as it went.
I woke up, sore throat from the tube, gagging for a drink. I eventually went back to the day case unit where I started and as I was taken back, I could see Sandra sat next to her bed in her own clothes, not in her gown anymore. I asked her what had happened. They had cancelled her surgery, ran out of time... 


Once I was at home I rested on the sofa, I felt soo poorly. Sick and tired. I was throwing up a lot. Couldn't even keep water down..The general had a nasty effect on me. Later I found out that neck and head surgeries have a worse effect on you with the general than any other body part. 
My scar healed well and is tidy. I kept it dry all the time and it seemed to do really well. I also took Arnica, something that Gaynor and Rebecca had recommended for fast healing.


On Tuesday 29th March I was looking to return to work for a couple of days before the Easter break. I wanted to see people and catch up and have a bit of normality before the hols. My results were due soon and I was wondering what was going to happen. 
On the Tues I got a phone call from the specialist. She had my results, I was to go in tomorrow. From the phone call I could sense it wasn't good news, she mentioned I could take someone with me, Anthony was working and there was no way he could get out as he had no leave left. I wanted to be strong and go myself - but I think we both knew the outcome wasn't an infection.


Wed 30th March - results day. I got to the ward early and waited to be called in. Scary awful paintings on the wall, horses on one and lions on the other. hmmm. 
The smell of that ward make me feel queasy, I am a smells person, I have a strong sense of smell - Anthony says I am 'like a dog and can smell owt'. :)
I had a white cotton scarf on- it smelt of washing powder and Next perfume so I sniffed that. Deep breaths.
I was called in with the specialist and another lady was walking in with her. I couldn't get why there was someone else there. I felt like saying who are you- even though I had just been told her name and job, it didn't register.
Everything was in slow motion. It took ages for her to get to the point, like in tv/film. Just say it i felt like saying. I was breathing fast and my heart was sinking. She told me.


Elizabeth from the biopsy we can see that you have Hodgkin Lymphoma a type of cancer.


The wording might not be completely entirely accurate, but it was around that. I don't remember much after that, I just stared into space. Past another scary lion painting into the car park. I was watching cars park up and people walking into the hospital doors. Oooh i didn't know you could go in that way. I wonder that they're here for.. *sigh*
I could feel the other lady put her arm round me and hold me and hold my hand. She was warm. I felt cold. I kept staring and answering questions that they asked me.
Can we contact Anthony..
Are you driving..
Do you want some water..
a cup of tea..
a coffee..


I just stared.
I was thinking other things some which stayed in my head, others I screamed out and cried outloud.


I don't want to die.
What about my mortgage.
How will I afford it. What about money.
I'm scared.
I don't want to die.
What happens next.


The other lady, turned out to be a Macmillan Nurse Specialist, her name - Helen.
 I turned to look at her. The only word I could think of was angel. She gently smiled and told me it will be ok and that I wasn't going to die. I cried silently and just stared back out of the window.
The doctor didn't want to go into explaining everything until someone was with me so they could listen too and help me understand/take it all in.
They called Anthony who drove from work and came to be with me. He is amazing. I can rely on him for anything. He is always there for me. Our love is so true and full.


He arrived. Looked so worried. (As you would be.)
Once Helen chatted to us both together we began to understand more what this type of cancer would mean and how it would be treated. (I will explain my treatment soon.)


Now I was calmer, I had been in there about an hour and a half.. had a coffee and was holding Anthony's hand.
Every minute I was learning in there, listening and finding out what was going to happen.
Helen was outstanding from the moment she started to explain things. Anything I threw at her she took and answered my questions and Anthony's too. So so supportive.


Helen gave me a cute little plastic folder (I am in love with any stationery) and it had all the information I needed. A big booklet about Hodgkin's and then some about treatments I would receive. Also a form to say I dont have to pay for any prescriptions and a special card to show I will have different blood when treatment starts so if I need a transfusion they can be aware of this.


I hugged Helen and thanked her. We went home and had lunch together. Anthony's work explained that he had their full support and this really helped him as he was concerned about time off to take me for appointments etc.


I'd told Mum on the phone about my results. She had rung about 5 mins after me finding out. It was really hard to tell her so quickly after me trying to process it. But I had answered the phone, I knew she would be worried and I wanted to tell her.


Telling people is one of the hardest things so far, at this stage.
You don't know how people will react. Emails/facebook messages/texts/phonecalls are all I have been doing really and I am very grateful for the amount of support and kindness people have shown me.


That night our friends came round, James and Laura and Tom and Sophie. It was so wonderful. It really felt like they had all rallied round to be with us. We chatted and caught up. Talked about my results and they supported me and Anthony so so well.


 I am very grateful and blessed to have so many people around me from home and work who will be there, I know they will be there for me, even when it gets bleak. Because it will and I have been told it will.
I don't think I understand or appreciate what it will be like.
But then again how can I just yet, I am right at the very beginning... :)