Friday, 21 May 2010

Last Chemo/CT Scan/PET Scan......REMISSION!

As you can see from the title of this blog...very good news! But I'll start from the beginning.

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

Chemo & MacMillan

I am very very happy to say that the last chemo (Cycle #3, treatment 1) was pain free!!
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

Lymphoma Assoc. Chairy do, PICC line infection, a week in hospital, Femoral line and Chemo#4

Well this past week has been very eventful! This may be a long read...

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

PICC line

I caved in and agreed to have a PICC line inserted into my arm. It's just like a cannula in that its a tube that goes into your vein except it goes in at my elbow and the end of it ends up in my chest somewhere.

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 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

Hair Loss and Rubbish People.

I somehow forgot to mention in my last post that my hair has started to come out. Ever morning since my last treatment I've woken up with hair on my pillow. Not loads but not just the odd one or two that would come out anyway. Highly depressing - part of me was praying to god I would be mega lucky and get away without the hairloss. Hopefully it'll just thin out and not be noticeable but considering my hair is already thin I wont get my hopes up. :( And if I hear another "Oh it will grow back" I am seriously going to do something I regret!

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

Chemo Cycle 2 part 1

Well after my blood wasnt good enough for chemo last thursday, they had me in on monday for a blood test. Turns out it was back to normal so I had my chemo then.

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

Chemo delay

So I was supposed to have the frist treatment of cycle 2 on Thursday but my blood wasn't good enough. Not sure exactly why but the nurse just asked me to go for another blood test on Wednesday and hopefully have the treatment on thurs. Fair enough I thought - give my arms a chance to recover. The next morning though I get a phonecall from the nurse saying the doctor wants to press on with my treatment with me being part of the trail so I have to go in tomorrow (monday) for a blood test and then to see the doctor after and hopefully have the treament then.

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.