Friday, 21 May 2010
So I went for what I hoped would be the last chemo on 7th May. It went fairly well. Had a bit of pain in the vein with the dacarbazine as it was sore from the last chemo but I still managed to fall asleep during it lol. Unfortunately my blood was very low (Neutropenia level was 0.5 when 'normal' is 7.0. So I was was very neutropenic meaning I was VERY susceptible to infection as I had few white blood cells.) They warned me about it before I went home. Unfortunately after a few hours of getting home I suddenly came ovr feeling very ill - I was feeling very very cold and was shivering which were both signs of infection so I went straight back to the hospital. They kept me in over night to test my heart, x-ray my chest, test for infection and give me IV antibiotics. I was allowed home the next day with anti-biotics yet again! Fortunately there was no infection, it was just all the chemo catching up with me and I was on antibiotics for a few days as a precaution with my blood being so low.
The following monday I was booked in for my CT scan. This scan would show if the lymph nodes that had swollen due to the cancer had reduced nor not. It was clear from just looking at my neck that it had gone right down but I couldn't tell from my chest. For the scan you have to drink a liquid to outline your organs. I threw it all up before I went in for the scan. Luckily I could still have the scan if I just drank water. The results came back the following week and they were very good. There was however still some swollen nodes behind my left breastbone but they were small enough not to be classed as abnormal. The doctor said that the results from this scan showed REMISSION! I couldn't believe he used that word. But obviously there was still a chance I wasn't in remission.
The next day, the tuesday, I went to London for the PET scan. I had to go to London as I was participating in a clinical trial to see about reducing treatment for patients like myself. The PET scan would show if there was any active cancer in my body. So it would show wether the swollen lymph nodes in my chest were actually active or not. I had the PET scan and then spent the rest of the day shopping in London and travelling home. I would hear the results by the end of the week so I expected to hear them on Friday.
The next day I was very tired and was asleep on the couch when my dad woke me up at half 5 to tell me the doctor was on the phone for me. My stomach did a somersault knowing it was probably about my results. Basically he said I was........IN REMISSION! I couldnt believe it. I had beaten cancer. I wasn't ill anymore and I didn't need to go through anymore chemo. Considering my life for the past 8 months was all hospitals and cancer it felt like I was never going to get to this point. I still needed to hear however wheter I would need to have radiotherapy or not just as default for being part of the trial as it is normally standard treatment for hodgkins lymphoma. I found out the next day the excellent news that I wouldnt have to have it. I was over the moon because radiotherapy would have quite largely increased my chances of breast cancer in later life as it would have been directed close to breast tissue. It would have also involved going to the hospital in middlesbrough everyday for 3 weeks...NO THANKS! It was all over.
Since the beginning of October last year my life has been all hospitals, 2 operations, needles, blood tests, overnight hospital stays, chemotherapy, scans and a hell of a lot of worrying. I've suffered from anxiety attacks late at night, felt very depressed and often wondered why I would even bother waking up some days just to suffer feeling ill. Chemotherapy really is HELL but I got through it and I think I am a stronger person emotionally now. I still had good days aswell as well as bad days.
Some friends didn't really bother with me right from the beginning of the whole cancer journey but some really made the effort with me, wether it was coming to see me or always asking how I was and how things were going. For those who didnt bother - I don't know wether it's because they didn't know what to say or sometimes I feel more because they were too wrapped up in their own petty problems I don't know. It's better to say something rather than nothing at all. You might have felt bad, but I felt worse. It's something I'll never understand but thats life.
Now my life will be 3monthly hospital checkups and getting on with being a 20 year old. I'm taking the next year out of Uni as I can still be suffering the side effects of chemo for up to a year and I shall return the following year to complete my final year.
Thanks to everyone who has read this blog. I hope it has been a help if you are going through something similar yourself and if you're just reading it out interest then I hope I have opened your eyes what cancer suffers really have to go through. (All too often I got 'Ohh it will all be over soon').
I'm off to enjoy my life. Lauren xxx
Sunday, 2 May 2010
I opted to go just for a venflon in my hand/arm rather than another line as I just really couldnt face it. To stop the Dacarbazine being so painful they put the venflon in a bigger vein at my elbow, put a heatpack over my arm and black bagged up the tube of the drip (normally it's left in the daylight which is stupid since the bag the drug comes in has to be kept out of the light...). It all seemed to work THANK GOD!
The next day I came back to Huddersfield where I was at Uni. I just felt like a I needed a break from home. I'm writing this now, a week of being here and my god, I feel like a different person. There's been no hospital visits, prodding with needles, nurses or anything. I've seen people who I havent seen since I was diagnosed and they treated me like I was normal and for the first time in ages I felt normal (or as normal as I possibly could!) Don't want to go home now as it will be back to reality!
I thought I'd write a little bit about my experience with MacMillan as I would reccommend them to anyone in a similar situation to me. One day I had a bit of breakdown after I had the picc line put it in because I was so fed up of it and of everything in general and told my mam I needed to talk to someone, someone who could understand how I felt. She phoned MacMillan and they put us in touch the local macmillan nurse who arranged to come and see me at my house to have a talk about what I wanted from them.
The lady that came round, Hilary, was lovely. She asked how I felt, what I wanted from them in terms of support and we dissused a few other things such as finances. She interestingly mentioned complimentary therapy I could have such as massage and aromatherapy so I was booked in for a session at the hospice and it was sooooooo good. I had a shoulder and head massage and came out feeling like a new person. (I've got 5 more sessions to go, woo!) Hilary also gave me a questionnaire to complete that was to assess how depressed/anxious I was and she gave me lots of papers on tips to relax. We arranged another session for the following week where we discussed the questionnaire which showed I was showing more signs of anxiety so she talked me through some ways to cope with this (and may I say I've had no more 'attacks' since! :)) We completed a form to apply for a macmillan grant for some money to go on holiday so I should be recieving a cheque for that soon. I'm due to see her again after hopefully my last chemo so I shall let you know how that goes.
At the moment I'm feeling good. I can see a glimmer, albeit a small one, but still a glimmer of light at the end of the long tunnel. After the next chemo on Friday I have the CT scan on the 10th and then the PET scan the following week so I need everyone in the world to cross their fingers and toes that I don't need anymore treatment!
Until next time :) xxx
Monday, 12 April 2010
A lovely lady my mam works with organised a chairty fundraiser for the lymphoma assocation after she heard I was raising money for them through shaving my hair off. It was a good family day with kids easter egg competitions and colouring competitions etc that I had to judge (eeek, dread to think how many little kids hearts I broke!) I even had to give a little speech which was quite nerve racking! I think a total of about £400 was raised which was amazing and apparantly one person donated £100 individually!
After the charity do I went to Pools (Hartlepool United Football team) and we won 2-0 woooo!
When I got home, after having pain in my picc line arm all day I decided I'd have to inform the hospital. When I'd taken my coat off I noticed it was slightly swollen above the elbow and I knew pain and swelling indicated infection.
I went on down to the hospital where I thought I would just have the line removed and then be sent home but to my absolute shock they wanted to keep me in over night. They took about 7 tubes of blood to be tested too. I was really upset because I'd suffered with the PICC line for 5 days and now I wasn't even going to get chance to use it and my chemo was due the next day. They wanted to keep me in to start me on IV antibiotics. By taking them through a drip going into my veins they were quicker and more effective than tablets.
The next day I found out they couldnt give me my chemotherapy because of the infection in my arm:
Because my arm was so swollen and painful on tuesday night one of the doctor reccomend I take some tablets...up my back passage!! I nearly died when I heard what they wanted me to do lol but in the end it wasnt that bad, and like they said it would make the drugs be absorbed quicker and so relieve my pain better than if I took it orally.
The doctor who inserted my PICC line came to see me and he looked like he was dreading seeing me haha! He said his main concern was giving me the nect round of chemo rather than the infection. He was saying he didn't want to risk the 90% cure rate which was pretty scary to hear really cos this was the second delay I was having. After he'd discussed my situation with my consultant they had decided they would put a new line in me every day of the chemo and then remove it straight after. I was going to have my chemo on the friday and I had the choice of either another picc line, a line in my neck or a femoral line that goes into a big vein in your groin. I opted for the femoral line because he said it was really easy, quick and the veins down there were the biggest in your body.
Later that day I was told my body wasn't responding to the anitibiotics because my immune system was so low. I just remember crying because my arm was literally getting bigger infront of my arms and it was as if they couldn't do anything.
On the night, my venflon fell out (the small tube you have inserted into a vein to take the drugs) which got me upset again infront of the doctor but he said that the antibiotics were having some effect as I had an infection called Cellulitus that he said could take over your arm overnight and mine was only spreading slowly.
My arm started to show signs of reducing size thank god!! They started to cover it in a special cream and bandage it up regularly that was supposed to help the swelling. I dont think much else happened this day apart from the usual IV injections and oral antibiotics taking.
The day of the dreaded femoral line...
The doctor on wednesday said he would put me down for sedation, I think because of the disaster of the PICC line insertion. Anyway a group of 3 doctors turned up on the morning to insert it and said they wouldn't reccomend the sedation cos it would just leave me feeling sleepy for the rest of the day and the procedure was quick and done with local anaesthetic anyway. I think it was supposed to take about 15mins max...30-45mins later it was in. The only word I can think to describe it is horrific. The tube goes in at the top of your leg in the crease. They had to try both sides because on the left side they knicked my artery so I could feel the blood pouring out of me. The whole procedure was very painful because they had to try that many times and it was on their very final attempt that it actually worked. It's definately something I'd not want to repeat. I remember telling the doctors before they started that nothing ever works first time for me and they were reassuring me how easy and quick it was...funny eh!
Chemo - was painless for the first time yay! However, because of where the femoral line was, I couldnt move my leg for fear of it falling out and then I needed the toilet just after the chemo had finished and because I couldnt walk it meant I had to go in a bedpan. Possibly the most humiliating day ever! The line was taken out and I was sent back up to the ward.
Pretty much a week later and finally allowed to go home! Sent home with a LOAD of antibiotics, painkillers and antiskickness tablets to take for the next week. It works out at 36 antibiotics every day. Bleurrrgh, theyve already made me throw up once.
Anyway I think I've included all the important things so hopefully the next entry will be a bit more positive. Hopefully only 2 more trips to the hospital for chemo! Fingers crossed!
Friday, 2 April 2010
The insertion did not go well at all. The doctor said it would be best to put it into my left arm since i'm right handed...makes sense. Basically the procedure goes as such: you get jabbed with a big needle (bigger than blood test ones) into a vein in your elbow and then I think its left there while a tube is threaded through it (I didnt look during that bit!)
So the nurse put the turniquet on my arm to get my veins to pop and the doctor said I had good veins - first time ive heard that! I was relieved as I thought it would mean the process would be straightforward...oh how i was wrong! He jabbed one vein with the needle which I'm not gonna like - bloody hurt! Then he started to wiggle the needle about because it wasn't in right - ouch ouch ouch! No success with that vein so he opted for another near it...stabbed with the needle again ouch! Wiggles about again ouch! Then he tried to thread the tube up....OUCH! Apparantly it was hitting a valve and just wasnt gonna go up so I turned to look at my arm and the doctor said and i quote, "Don't look now, its a blood bath" which it was - blood EVERYWHERE so its a good job I don't faint at the sight. By this point I was blubbering away because of the pain and because every single thing I've gone through with this whole crappy cancer has not been straightforward, there's always a problem somewhere.
Anywat this meant he had to resort to my right arm. Got the needle in and he didnt think it was in properly again but luckily when he tried to thread the tube up it worked THANK GOD. I thought i'd feel it going through but I don't think I did, it was just a bit weird. Got bandaged up and went home.
Its now 2 days on and to be honest my right arm is pretty much useless as the tube is coming right out the bend in my elbow so i can't move it much which is kinda crap since im right handed. I cant do the simplest of things like pick something up off the floor, get dressed or put make up on. It really got me down today and ~I was on the verge of going back to the hospital to get it out..my mam was even on the phone to them about it but I know I can't take the pain of the chemo so either way I'm stuffed. I just don't see how the uselessness of my right arm is gonna be woth it more than 10minutes of pain every 2 weeks. I've looked to the internet for reassurance that it will get better but all it's done is confirm my fears that it wont. Im gonna have to have a chat with the nurse about it on tuesday as I'm really not happy and it's got me really depressed.
A quick update on the hairloss situation...the past few nights i've fallen asleep with my dressing gown hood covering my head so I've not noticed much more hair coming out but I suspect more will come out quicker after my chemo on tuesday sighhh. For now though you cant really tell (I Hope!!) Heres a picture:
Friday, 26 March 2010
This is the blog post I didn't want to do but since the aim of this blog was to show how I was coping with having cancer, I felt I couldnt not include it.
As for "rubbish people". This has definately been the loneliest and most depressing experience of my life. I feel I've had more support from people who don't even know me than the ones who are 'closest to me'.* I've had loads of messages from total strangers, my housemates spending a fortune I know they havent got to come see me, gifts and letters from people I've never met and yet practically nothing from some of the people who I thought would be there. I guess it's times like this where you find out who your real friends are. I could go on but I'm so frustrated to the point of tears and if I cry anymore I'll find it harder to breathe cos of my rubbish chest.
Nevermind..I guess I was only well..dying?
*(Dont get me wrong there are people who have been great with me)
Thursday, 25 March 2010
My consultant came to see me first. He had a feel of my neck and said my neck was responding really well (you can hardly feel any of the lump now!) so thats a good sign. He talked to me about getting a line put in since I've been suffering with my veins. He even said that the hickman line that was mentioned to me before probably wasn't the best option for me anyway with me only needing 3(hopefully!!) more treatments and it would leave me with scars. So he suggested whats called a long line and this just goes into my arm. Sounds loads better so I told the hospital today (Thursday) that I want one and I've got an appointment for next week. Not looking forward to it like.
So mondays chemo went same as usual. All the drugs apart from the dacarbazine went through fine but as soon as that one started I got the excrutiating pain in my hand again. It was so bad it reduced me to tears. I took some paracetomol(which even the doctor said probs wouldnt make much difference as the pain is from the direct effect on my veins). Then I sat with a heat pack on my arm and they diluted the drug down with some water. This made it bearable and I sat talking to the student nurse for about an hour while it dripped through to take my mind off it. About 4 hours later I was done thank god! Left the hospital and went to lidl to stock up on creme eggs which I then procedeed to eat 3 of followed by a kit kat chunky and I then put a pie in the oven and only didn't eat it cos I fell asleep for 4 hours. I always get the munchies after chemo because of the steroid injection. Its pretty ridiculous how much food I can put away on those days lol.
As for side effects it's just been the usual really. Tiredness the main one. Im writing this at 5.42 after only getting up at 3 and I'm shattered already. Constipation has been another big issue. Yes you really wanted to know that! As for a sore mouth, it hasn't bothered me yet thank god. Last time it was really sore so I don't want a repeat of that. My veins are giving me a bit of pain but its not too bad and i have been feeling a bit sick but I havent found myself with my head in the toilet bowl just yet so hopefully this feeling will have gone tomorrow.
Until next time!
Sunday, 21 March 2010
It's kind of annoying that they haven't really said what would happen if my blood is still not good enough but it feels like all the way through this process I've learnt more about whats going to happen via the internet rather the doctors and nurses themselves. Nevermind though, will just have see what happens tomorrow.
For side affects... My left arm was really painful the day and day after of the last treatment but I havent had the numbness I did with the first treatment. Still no hairloss on my head yet. The longer it takes to start to come out the more its gonna be upsetting I think. If it's gonna fall out I just want it over and done with. The main thing I've suffered with however is tiredness but it's hard to tell whether it's any worse than what I was suffering from just having this cancer in the first place. Oh I also had a reeeeally sore mouth this time. It started the day after the treatment and got worse over the following few days. My mam had to go to the hospital on the monday for me and get some mouthwash that works as a painkiller. It had just gotton to the point where I didn't want to eat or drink it was that painful. Luckily though it cleared up in about 2 days.
Finally got some Uni work through but finding it hard to motivate myself to do it since it is about promoting the Uni and I think the place is a shambles.... Been putting it off for a good few days but managed to write 400 words yesterday. If I leave it for tomorrow....maybe it will take my mind off feeling bad from the treatment...yeah, it's blatantly not getting done for another week lol.
Tuesday, 16 March 2010
Don't think I'm experiencing any hair loss yet altho if i do tug at my hair enough a strand will come out but im sure thats just normal shedding of the hair.
Just fed up of being a skinhead. Makes me feel ugly and not feminine in the slightest and I know I'm just waiting for the little hair I've got to fall out.
Sick of people commenting on my wig and saying things like "oooh i wish my hair looked as good as that" or "eee it must be so easy not having to style your hair". They just don't understand what it's like. I'd give anything to have to spend an hour trying to style unruly hair on an extremely bad hair day. I'd give anything to have some hair to style.
I want to looks like this again:
Not the blatant wig wearer I am here:
I JUST WANT TO BE NORMAL!
Blood test tomorrow before chemo on Thursday. Have a feeling the result isn't going to be good. Sigh.
Friday, 5 March 2010
I don't know why but I had a feeling that this one wasn't going to go as well as the first treatment and sadly I was right.
All the nurses knew who I was before I even opened my mouth as they had seen me in the local newspaper!
I'd had the first treatment go through my left hand and my left arm had been achy and dead feeling for over a week after. I don't know why but I stupidly said to use my left arm again for this second treatment. Even the cannula going in hurt a lot more than usual. The first lot of drugs going through felt fine but as soon as the last one, the nasty one (Dacarbazine), went in after about 10minutes (bearing in mind this drug can take over an hour to drip through) the pain in my hand was so bad I was on the edge of tears. The nurses came over and turned the drip off while I sat holding back the tears. They gave me some paracetomol to take and then started the drip again after a short while. Straight away the pain was back and they had to turn the drip off and get the doctor.
The doctor mentioned having one of them picc(I think it was a picc??) lines put in which is a semi permenant tube inserted into my neck and chest. I nearly threw up on his face at the thought. I dont think I could face walking round with a tube hanging out of my neck or chest every day. The thought of it only being put in under sedation didnt help either. I told him I wasn't keen at all and so he said if I could manage with my arms then that was ok. Apparantly it's not often they put semi permenant lines in for this type of chemo anyway. He just said they could try as bigger vein further up my arm.
The nurse came over to put another cannula in my other arm. I thought she was going to put in near my elbow but she ended up putting into my hand. Great. Anyway, I managed to take all the drug through my right hand thank god. I think my veins in my left hand just hadnt had chance to recover from the first treatment but now that both hands have took drugs through on this treatment Im scared for next one as I don't know how Im going to cope with dacarbazine. Especially since now my left hand has a huge bruise already around where the cannula was and it was even painful just to type with that hand last night. It looks like it may have swollen a little too so I'm going to have to keep a very close eye on that.
All day after that I spent eating. I'm assuming that was down to the steroid injection I'd had before the chemo drugs. I wont even list what I had to eat or I'll be here all day haha.
But on a good note...I've only took 1 anti sickness tablet and that was before I went to bed last night and "just in case". It's 16.41 day 2 and I dont feel sick at all. I've probably just jinxed that though eh...
On the tuesday a reporter and photographer from the Hartlepool mail came around to take my story for a feature in the newspaper. The next day I was on the front page of the Hartlepool Mail with a big photo and huge headline. I certainly wasnt expecting to be on the front page and it was a bit of a shock!
So I went down to my dad's cousins salon on the Friday where there was another photographer from the mail and a reporter. I was soooooooo nervous. Never ever ever thought I'd shave my hair off willingly one day! My family and friends came down to watch and I can't describe how weird an experience it was. I almost felt like I'd lost a limb and couldnt bring myself to touch my shaven head it was that strange. Apparantly the look suited me though LOL. It was a very emotional day but no tears thank god, how I kept them in I dont know.
I just hope in doing so I have helped to raise awareness of Hodgkins Lymphoma as well as raising money for the charity. That was my main aim of getting it in the paper so I just hope it's worked.
I then featured in the paper again the following tuesday with a picture of my baldy head on the front page :)
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.