Monday, 22 February 2010
The only things I have been suffering with are a dull aching pain in my hand where the needle wsas put in and it is also slightly bruised.
I've had a bit of a sore mouth too because the drugs attack your healthy cells too so they are attacking the lining of my mouth and this has made it quite sore. It's a strange feeling, quite hard to describe. If it gets any worse I will phone the hospital and they will give me some special mouthwash.
Oh and also...a bit of constipation but I think this is from the anti-sickness tablets I was taking!
I opted for the clinical trial as it would mean hopefully only half of the chemotherapy I would have got just having the standard treatment. If the PET scan result did show cancer still then I would simply have another month of chemo then radio therapy so ultimately it is still less chemo than the standard amount.
Once all the treatment is finished I will have to make regular trips back to the hospital for scans etc which is very reassuring as there is a chance the cancer could come back so I'm sure it would be spotted straight away.
The next day on the friday, I had my first have of the first cycle of ABVD. (1 cycle is 2 treatments which are given every 2 weeks. Complicated I know!) I had to have it in North Tees for some reason even though I will be getting the rest of my treatment in Hartlepool where I live. Got to the hospital at 11 and went to the chemo unit. There were a circle of chairs in the middle of the room and 1 lady was hooked up too a drip and the rest of the people were just sat waiting...the main thing I noticed were that they were all about 30 years older than me. How depressing.
Had the cannula put into my hand - a little uncomfortable at first cos it was right near my wrist but it soon wore off. Had to do a urine sample to make sure I was pregnant. This was ridiculously hard with only one hand! Lol. Went and sat back in the "circle". A lady came round with "snack bags" which contained sandwiches, fruit, juice, crisps and biscuits. WOO FREE DINNER!
Soon after the nurse took me to the corner of the room to start the drugs. 2 of them were injected (I cant remember which ones exactly). 1 of them was a lovely red colour which later made my wee reddy orange :) The next one was given via a drip but didnt take very long and then the last one was a large bag of fluid that had to be given by drip. The nurse said it would take about an hour to go through but it may hurt my arm going in so if it did then they would slow it down to ease the discomfort. It started off a little uncomfortable but it wore off and after an hour it was finished. The nurse finished off by flushing some more salt water through and then I was ready for home. I was given a chemo record book to keep note of all the side effects I get and to note down all my hospital appointments etc.
Got home and fell asleep on the couch for a few hours. Woke up and felt fine - I was expecting to be feeling really ill but I wasnt at all! Didn't even go to bed till 1am, I was just like normal.
The whole day didnt turn out to be as bad as I thought it would be. Apart from being the youngest there by far, everything was ok :)
Monday, 15 February 2010
Also said my treatment could start at the end of the week if it was ok with me which ovbviously it was - the sooner the better. He said he would call me tomorrow to arrange it a bit further I think so I am guessing I will have my frist treatment on Thursday or Friday.
Was hoping I would make it to the football on Saturday, Hartlepool v Huddersfield, my two towns(!), but somehow I have a feeling I wont be able too lol.
Thursday, 11 February 2010
Still waiting to hear back from the doctor and from uni with some work for me. Feels like I have spent the last 4 months of my life waiting for people to make things happen for me. Just want to get everything started, the sooner the treatment starts the sooner it's over. Not long to go now I guess.
I bet the doctor calls me tomorrow when I'm hungover in bed!!
Wednesday, 10 February 2010
Got to the hospital and they took me a room on a ward. I think I could have had it done in their clinic but for some reason they wanted it done on the ward.
Had another cannula put into my arm - getting really fed up of these now and I'm only gonna have it more when I start the chemo. Have a feeling I'll need a port putting in cos my veins are sometimes difficult to get up.
I laid down on the bed on my left hand side as I was having the biopsy taken from my hip on my right hand side. A lady came in to give me the sedative while the doctor was faffing on behind me. No sooner had she put the needle in than I was feeling sleepy. She put another 1 maybe 2 lots of sedatives in and I briefly remember talking to her about wigs and headscarves and then the next thing I knew I was waking up 11.15 (they started the biopsy at about 9.30)! I'd been asleep on the bed for about an hour and half which they had reccomended I do to get over the sedative. I couldnt remember a thing from the biopsy! Probably a good thing if it was painful but the doctor said I dealt with it really well so who knows how I really reacted lol
Apparantly I'd asked my mam to get me a sandwhich to eat in the car which I also have no recollection of haha!
I can't believe how worried I was over the biopsy. It really was nothing and I only have a small plaster on my back covering where the needle went in and that can come off tonight. They said it may ache a little but nothing that wont be sorted out with paracetamol but so far its not bothering me.
I think I'd genuinely rather have that than a CT scan again. The bone marrow biopsy really was a breeze and now I just have to cross my fingers that the results come back good!
Tuesday, 9 February 2010
The saturday night we shaved the boys hair off and waxed their legs. So far we have raised £1825 for the Lymphoma Association. I can't believe it!
Anyway, on Sunday after I had packed the car with my life, my house mates took me into one of the boys rooms where they had some presents waiting for me awww! There was a collage poster, a mug with a photo of us all and a puzzle that was a photo of us so I had something to do when I got bored. They'd obviously gone to a lot of effort to get it sorted and I had to leave before I cried. I was gutted to be leaving but have vowed to keep in touch via phone and im going to sit at the end of their table on webcam while we all have our tea :) I can't wait to go and visit!
On monday I went to the hospital with my mam. The cancer is also in my chest aswell as my neck. I'd suspected it might be because I just had "a feeling". Apparantly it's not uncommon because the neck lymph nodes are connected to the ones in the chest. I don't think it makes it any harder to get rid of either.
On asnother bad note, something flagged up on my PET scan with regard to my bone marrow. Lymphoma can also affect the bone marrow you see so I am due to have a bone marrow biopsy today at 9.30am(I am writing this at silly o'clock in the morning!). If it has affected my bone marrow then it's to quote the doctor "bad news" but he seems confident that it hasnt and it was just reacting to the scan or something.
I however feel less confident, again another "feeling", I just hope Im wrong but I cant help worrying. If I didn't worry about things they would come as more of a shock when they happened.
So fingers crossed for tomorrow! I hope they heavily sedate me too as I have visions of needles in my arms hitting bones so god knows what I will be like having one actually drilled through a bone :/
Got to the hospital and was sat opposite a man who I overheard had prostate cancer. Again with the feeling of me being too young for cancer. I was given a jug of what looked like orange juice but it was some chemical concoction that was flavoured to taste like aniseed. Had to drink one glass every 15 mins. The first glass wasnt too bad but after a few more I realised why I was sat next to a sky high pile of puke bowls.
After 3 or 4 glasses I was called in to get changed into a gown. Then I had to go in for an injection. I thought this would be similar to the PET scan but I had to have a cannula thing put in my arm ready for an injection while in the scanner. WHAT>. Anyway, the lady tried twice to get it into my vein, failing once on one arm and then finally succeeding on the right arm. For some reason it was quite painful on both arms. Once the cannula was fitted I went into the scanner rooom.
Like the PET scan, I laid on a bed that was to move through a doughnut scanner. The cannula thing was then connected up to an injection pump and I had to lay with my arms above my head. The nurse warned me that when the injection went it I would feel warm and feel like I would need the toilet and feel like I was actually going to the toilet but really wouldnt be. WHAT! I wasnt expecting this! She said if the injection hurt when itr was going in I was to say so.
She left the room to start the scan and then they started putting the injection through. It was soooooo painful so I told them but they said it was going in fine so I had to suffer it. As soon as the pain was over though came the most disgusting feeling I have ever experienced. It really did feel like I was peeing myself. It was absolutely horrible and I am absolutely dreading another CT scan.
Also the next day...they failed to warn me I could react to the stuff I had to drink and have diarohhea. Lovely!
Had to go and empty my bladder in a special toilet designated for people having PET scans only. Obviously they didnt want me mixing with people when I was radioactive. I was gutted I wasnt glowing green though lol!
For the scan i layed on a bed and was strapped in with my legs propped up. The bed then moved in and out of the doughnut shaped scanner and was over in about 30mins. Then off home and out for a friends birthday!
I emailed one of my teachers to see if I could go in and discuss my options with him.
[Turns out I can possibly continue the work from home as they will write me new individual assignments so I am in the process of sorting that out, but very happy at the prospect of being able to finish the year!)
She felt the other areas of my body where I could have had enlarged lymph nodes (armpits, abdomen & groin) and said she couldn't feel any. Phew!
Talked about the fact I'd have to have chemo and she suggested I should go home back to Hartlepool for it so I could be with my parents who could look after me. I got upset because it meant dropping out of uni and I dont really think they understood how much that meant to me. I decided to stay in Huddersfield for the PET and CT scans I needed so I could spend some more time in the house with my housemates.
Had a quick chat to a lady who worked in the haemotology deparentment and knew more about the cancer. She gave me a booklet about hodgkins lymphoma to take home and read and I was booked an appointment for the next week to see a Haemotology doctor.
Went back to my student house and my parents left for home after a shortwhile. Went upstairs and cried to myself to let it all out. Came back down and we all ordered a takeaway. I was begginnig to feel a little better.
Within a few hours I had made the decision to shave my hair off before I lost it to the chemo. I set up a justgiving online donation site and the boys said they would shave their hair off and wax their legs so I didn’t have to go through it alone. I set an initial target of £200 and genuinely thought I would struggle to get that but within a few hours I had smashed the target and had to raise it. As I am writing this on February 5th the total stands at £1,615. AMAZING! I figured there are people who wont be as luckily as I hopefully will be and so I wanted to do something for charity.
A week or so after the biopsy my mam called the consultants secretary and she said I would possibly have to have another biopsy because there was inflammation or something like that. I didn’t know whether this was good news but I thought surely if it was cancer it would have shown up so was beginning to feel a little better about the situation. I was booked in to see the consultant on new years eve.
It turned out that my first biopsy came back as normal but he didn’t want to rule the cancer out so he put me in for another biopsy, a bigger one on the 5th January. He was going to go deeper into my neck and take a bigger piece out so I would have to have a drain put in and be kept in overnight. I was so angry! My scar from the last biopsy was just beginning to look ok, I’d barely just took the steri strips off it and now they were wanting to do another biopsy. Why did the result come back as normal? Not only that but I had to go all the way to Halifax for the operation and I was back living in Hartlepoolat the time.
The second biopsy wasn’t as nice as the first, they reopened my scar but made the incision longer (and slighltly wonky lol), it was hard to sleep lying down cos as soon as I’d lay my head down it would be painful on my neck to lift it up again. My incision ended up getting infected which meant it kept leaking and a trip to A&E, lovely!
I returned home to Hartlepool for the Christmas holidays soon after and about 20mins after getting home I hit a pub with my friends. It was good to see everyone and I had told a few of them I thought I could have cancer so it was nice to be around people who knew I was probably feeling a bit down. On the way home I ended up losing my bag in a taxi which had practically my whole life in it. I was absolutely distraught, got in the house and then everything about the cancer came pouring out. My mam had to get out of bed at 1am to come and console me. Why me? I kept asking her. I don’t want to go bald I kept saying, what have I done to deserve this?
I decided to quit my job as I was going to have to go back to Huddersfield and be on my own and I didn't feel in any fit state to be alone. Luckily work were very understanding of the situation and wished me well whatever the outcome.
When I first found out I had Hodgkin Lymphoma in January. I was devastated. I was only just 20, I was too young to have cancer surely?
In a strange way it was also a kind of relief. I hadn’t been well for quite a while; a lump appeared in my neck at the beginning of October some time and so I made a doctor’s appointment for the very next day. I was also feeling quite tired but thought that could have just been because I was burning the candle at both ends with the student life style. Initially I wasn’t too worried at that point cos I just thought it would be “one of them things” and it would just go on its own. I went to the doctor and he asked me about various others symptoms of which I may have had of which I had none and booked me in to take a blood sample. I remember him saying it could be mumps to which I laughed because I thought I would have had chipmunk cheeks if I had mumps!
A few blood tests later it came back that the mumps virus was found in my blood however after completing a swab test for the local health protection agency it came back that I had had mumps but not necessarily recently so I still had no idea why I had this lump. A few weeks on after going to the doctor each week for them to check on my neck, they were getting very concerned. I was referred to the hospital for an ultrasound on my neck. When I got to the hospital they scanned my neck and then my whole body. This scared me as I wasn’t expecting them to be looking at the rest of my body – could it really be something that serious? It turns out everything seemed fine but they wanted to do an needle aspiration on my neck. I burst into tears; I had been expecting having to have it done at some point but not there and then and I was beginning to get really fed up of not knowing what was wrong with me. They never really told me what they would be testing for so when I got a call off my GP later that week saying everything looked fine from the aspiration as there was no cancerous cells I was shocked then relieved. But still this didn’t explain why I had this persistent lump in my neck that was getting bigger.