PICC Line Panic!

When my consultant informed me I would need a PICC line and explained it to me (Yeah I had no idea either) I was absolutely terrified.  The procedure sounded terrible, I am a pro at all sorts of awful treatments now but at the time I was a total novice! However, it certainly ended up being my best friend and for anyone who is about to have one I cannot praise them enough!

The PICC line or peripherally inserted central catheter comes with its own plastic card for you to carry around with you, like a loyalty card but without the fun benefits! It's inserted into the vein in your arm above the elbow, into a large vein and sits just above your heart.

I had to have one mainly due to my chemotherapy drugs being so caustic that it would seriously damage my veins, this would protect them.  I was given blood transfusions, fluids, antibiotics and chemo through it and regularly had blood taken from it saving me from numerous needles!  As it was I still had to have cannulas in both hands as I needed several treatments at the same time plus a syringe driver.

One of the nurses who was looking after me the day I had it fitted arranged for me to have some medication to help calm me down.  When the time came I was taken to the Radiology department in my bed, when I arrived I was 'parked' in a side bay while the doctor explained the procedure to me and asked for my consent.  I remember the nurses being so kind and patient keeping me calm while me and my husband waited for what seemed like hours before going into the theatre.  This was very early on so the whole hospital environment was alien to me anyway!

The doctor and nurses chatted throughout my PICC line insertion totally putting me at ease, I even managed to joke with them!  One of the nurses was trying to explain what 'taking the mickey' meant to the doctor, who was obviously foreign, I reassured her it was ok to swear in front of me!! She didn't though!  Once it was over I was surprised at how painless and straight forward it had been, whether they deliberately chatted throughout to distract me or not I don't know but it certainly did the trick!  I made sure I expressed this to them, I wanted them to know how much they'd helped me, they were really happy to hear it, hope I made their day!

I had it drummed into me that the PICC line is vulnerable to infection and it was my responsibility not to let anyone touch it without sterile gloves on.  It was yet another thing I became neurotic about! When the nurses cleaned it, every time I had any treatment through it, I watched them like a hawk making sure they used the correct procedure.  Some staff weren't allowed to touch it at all as they were not 'PICC line trained'.   Everyday the consultant would check it carefully for any signs of infection, they do take it extremely seriously, I was in no doubt at how important all this was.

On the rare occasion when I was out of hospital I would have to go to the medical day unit to have it flushed and cleaned.  I met some nice people in there, once I sat next to a really chatty lady, similar age to me, it was lovely to talk about normal things!  I had a drink bottle with a build up juicy drink in it, she really liked it, I'd brought from Primark so we chatted about how much we loved shopping there!!

At first I couldn't even look at it and really struggled to tolerate the nurses using it but, in the end I got used to it.  It helped that I'd realised it was the best invention since hair straighteners!  It's something I chatted to other patients about and we had all come to the same conclusion!  They are fab-u-lous!

My PICC 'Loyalty' Card!

When Food Becomes the Enemy!!

So on each cycle of chemo I would lose my appetite and have to really battle to get it back again.  It is so hard to have to build yourself up over and over again!  Like when you have had a really bad sickness bug, you don't want to let anything pass your lips, not even water!  I was even paranoid about drinking water, so much so that I would end up on a drip as I was so dehydrated!  In fact when they told me they were putting up a drip to rehydrate me I would be relieved as it meant I wouldn't have to drink anything...crazy!

I was so weak and ill that my husband and sister had to spoon feed me Weetabix or Ambrosia Rice yoghurt's!  My sister in law would pop to the local supermarket and get anything she thought I might eat.  I know now they were so worried about me but at the time I didn't realise.

Trying to eat in hospital...urgh!

I would get really anxious when it was getting near to meal times, we spend whole lives being conditioned into eating meals three times a day, it's surprising how ingrained this is!!  My mum pointed out that I just needed to eat little and often, when I wanted to and not at my perceived normal meal times!  I tried to keep this in mind, it did help!

Also because I knew I was really vulnerable to infections and that they can be really dangerous I was paranoid about germs in food!  I was advised to avoid some foods altogether, this just reinforced my dislike of eating!

When I came out of hospital after the first cycle I was in bed for a couple of days feeling so rough, my husband even said that he thought I would be better off back in hospital.  This really upset me but he was so worried!  We contacted the hospital and the registrar changed my anti sickness meds and I started to feel a little better.  The first thing I fancied eating was a fish finger sandwich which my husband happily made for me!

I would live on Ready Break or Weetabix, I just gulped it down without tasting it.  Once I sat staring at one Weetabix in a bowl for half an hour psyching myself up to eat it!  I knew I had to eat and got paranoid that if I didn't eat I would die but I still couldn't put it in my mouth!

After the second cycle, when I came home for a week all I would eat was ham, egg and chips!  We went for a takeaway at my sisters once and she had to make it for me!  When we went out for meal to celebrate my birthday we had to ask the chef to make it too!  Another time it was chicken chow mein and before that mash potato, gravy and yorkshire pudding!  I know....random!

Whenever I had a sudden craving for something my family would rush out and get it for me!  One of these was for the foamy shrimps and banana sweets.  My Dad would regularly buy these for me and luckily they had them in the hospital shop!  I also liked leek and potato soup at one point, it always had to be the same brand as I'd become so fussy, when I found something I liked I was too scared to change anything!

Foam shrimps and bananas!

I also lived on these build up drinks, Fresubin Energy and Fresubin Juicy, I would have it with lots of ice and a straw...yeah...cancer's cocktail!!!  A lot of people don't like them but I ended up enjoying them!  I first discovered it with ice when the nurses on the ward suggested it, I was well impressed that I could have ice in hospital.  A couple of times they put ice cream in it and that was quite nice! When I was at home I didn't go anywhere without my sports bottle with Fresubin and Ice in...it got to the point when I was neurotic about it!  Then my husband and daughter started to make sure I'd always got one with me too!!  Crazy the things you get obsessed with!

I never thought in a million years that food would become my enemy!

Enjoying a Solaro!!

My AML Leukaemia Symptoms!

So a lot of people ask me how I was feeling before I was diagnosed and for how long I'd had my symptoms!  Well the scary thing is 'Not long!'

It was around Easter time 2015 and the earliest symptom I can remember was having a thumping headache that lasted all weekend and I couldn't shift it.  However, I still went to work that week and felt ok just a little tired!  Then I started having what I can only describe as flu symptoms, fever, headache, loss of appetite, fatigue, aches and pains.  So I didn't go to work, I've been in my job for five years and only ever had a couple of days off sick, I'm not ill very often.  The next weekend I wasn't feeling any better, my neck started to get painful and I developed a rash on my chest. I also started a period which was really heavy compared to my normal ones.  I went to the GP out of hours at my local hospital just to get checked out and they just put it down to a virus.  They put the rash down to an allergy to clothing or wash powder even though I insisted that I had no new clothing and was using the same washing powder that I always do!  On the Monday I rang work to say I wouldn't be in as I was still no better and then went to doctors as I needed a sick note and by now as I was no better I assumed I would need antibiotics or something!

So I only been feeling unwell for about ten days!!!

So my symptoms were:
Painful Neck
Rash on my chest
Fatigue
Loss of appetite
Heavy period
Fever and sweats
Looking pale
Bone pain

AML is so aggressive that it needs to be treated immediately and it scares me to think that if I'd left it any longer I may not have survived!

Below is a list of typical symptoms of Leukaemia so be Bloodwise and go to your GP if you have them!!

The Plus Side of Cancer!!

You may think I am crazy but, one of the plus sides of my Leukaemia was the weight loss!!  Before I was diagnosed I'd been trying to shift a few pounds so this was a bonus!!  When I'd finished my treatment and was strong enough I really enjoyed trying on all the clothes that hadn't fitted me for ages!!

Renewing old friendships, we are all super busy these days that we forget to take time for ourselves and friends!  A lot of old friends have been in touch, some I hadn't seen or spoken to for years, this really makes me happy and determined not to let them go as this has united us again!



Making new friends has been lovely, cancer has united us, given us something in common and it may not be nice but, I wouldn't know all these amazing, inspiring people otherwise!

This pretty much sums it up

Generosity from so many people it has been overwhelming and so many that I cannot mention them all in one blog post!  At some point I am going to write a list as I am very, very grateful to each and every one!  Helping with the care of my daughter, meals for my husband, being offered a mini break by someone owns caravans at a holiday park, lovely gifts from friends and family!  A large number of people have helped raise money for various cancer charities because of me and plan to do a lot more! Some people on Twitter, whom I've never met, donated money in my name and have sent me lovely messages of support!  The company my husband works for and his colleagues did some fundraising!  My daughters Dance School made a large donation to Bloodwise!  I was given an ipad by a family member and a cover for it by another! This enabled me to keep in touch with my daughter via Facetime while I was in hospital!   I received a care package from a lady in America who reads my Collabro Blog and card from another!

I was granted a disabled badge which is a godsend, especially when we go to the hospital and the car park is quite a walk!  It also allows me to park outside my chemist when I need to collect any medication and on the school run I can park quite near the school.

Feeling loved, I've always been one of those people who wondered if people really liked me or if they were just pretending!  Well now I definitely know...I am liked!

Random but my nails grew really long and strong, this is really unusual for me.  I gave up on having beautiful long nails but, during my time in hospital they were fab!  Probably down to the fact that I wasn't doing anything, no cleaning or catching them on anything!  I even painted them once as I was so excited!!  I'm afraid they are not like this now, no back splitting and breaking...I wanted to get back to normal but with nice long nails!!

I just had to get a photo of my nails!

And finally, of course, writing this blog as I've always dreamed of being a writer!

All these things make me feel alive and to me that's what life is all about!  Cancer really has changed my life, not all of it for the better but, in a positive way too!

Me trying on clothes!

I hadn't been able to fit into this for ages!

Awful Chemo Sickness!

So a lot of people who have had chemotherapy will probably have experienced nausea, sickness and appetite loss to some degree.  Unfortunately in my case it was pretty extreme!

Overall during my treatment I lost two stone in weight, it got so low that I went below the healthy weight that the NHS uses as a guide.  I ended up having to have a tube through my nose and into my stomach! I remember having this inserted twice and was told that if I didn't follow the registrar's instructions it could end up going into my lungs, scary!  I had to sip water and swallow while he pushed the tube up my nose and into my stomach!  It was not pleasant having this in all the time although it did really help as once my body was getting the nourishment it needed.  Each bag had 1200 calories, I hadn't eaten anything for nearly three weeks!

On my second cycle of chemo the anti sickness or anti emetic medication I was given, Metoclopramide and Ondansetron worked fine.  I remember thinking that I shouldn't be feeling so well! BUT...

Then the third cycle of chemo, which was a different drug, high dose Cytarabine, really hit me!  I went downhill extremely quickly!  It came as a bit of a shock as on the previous cycle I hadn't felt this ill.  When I was first diagnosed one of the first things that came to mind was my fear of being sick, it really made me anxious!  I told the nurses at the time and they reassured me that there is plenty of mediation to prevent this!  Trouble is I had to try several before we found one that worked! By the time we found this I'd been really sick for two days, it was truly awful!  Before I'd started the chemo, you have to be admitted to hospital 24 hours before, I'd been chatting to the other patients, they couldn't believe how my behaviour changed once the chemo kicked in!

And of course you have the added pressure of being on a ward with other patients so you try to be sick quietly!  One time I was really nauseous and trying not to be sick and another patient was trying to be kind and talk but, I couldn't reply for fear of vomiting!

So, during the third cycle we eventually found that Levomepromazine or Nozinan, usually used in palliative care, kept the sickness away!  This drug really knocked me out, I could hardly open my eyes but in a way it got me through those days of chemo!  I used to hate seeing the big bag being put up by the nurses and thinking 'that's poison and I'm allowing it into my body!'

Because I also got chemo induced Colitis I was given Hyoscine Butylbromide, Diamorphine and Nozinan via a syringe driver.  A syringe driver is inserted just under the skin and delivers medication slowly and continuously!  Again these are usually used in palliative care and because of my job I knew that so when I first saw it I was pretty freaked out however, in the end it really helped so I was more than happy!  Unfortunately my body reacted to this by forming a lump around where it was inserted which ended up bruising and bleeding.  Because my blood wouldn't clot I was given medication to stop the bleeding!  I still have a mark on my arm now!

An example of a syringe driver

My poor arm!

Once I had finished the chemo which was twice a day for five says the sickness relented and then it was the start of the next nightmare...getting my appetite back!!

My Mind Everyday!!!

So in my head everyday there is an immense mash up of different emotions and feeling swirling around!  I decided to create this post to try to visualise this and perhaps it will ring true with other patients!!  Please let me know what you think in the comment box below!!

This is pretty much how my brain ends up feeling at the end of every day!!

So these are all the words that go through my mind a hundred times a day!!

Chemo Brain!!

So many things going on at once!!

Yes it is actually a thing and I am currently having first hand experience of this!!  

I only started to notice it once I had finished my treatment and was back home starting to get back into my so called 'normal' life.  Having to run the home again, get ready for Christmas, my daughters dancing activities, school things, etc!  It took me weeks to remember the time of one of my daughters dance lessons, I had to keep asking people over and over again!  I am fine in the mornings but by mid afternoon my mind becomes foggy and I have difffculty understanding things or making decisions.  I have to say to my husband, 'talk to me about it again in the morning as I can't take it in now.'

One of the symptoms of this is that sometimes I cannot get the right word out for something! For example the other day I was trying to say 'buffet' and I actually said 'barbecue'!  I now use the word 'thingy' a lot!  My brain seems to get stuck and I just cant get the message from it to my mouth to verbalise the word I'm thinking!!

Memory loss is another symptom, for example me and my sister ordered our daughters the same dress from the internet and I even handed the money over to her but, the next day when I saw her I said 'We need to order those dresses for the girls', to which she replied, 'Anna, we did it last night and you even gave me the money!'  This was one of the first times this happened and before I had Leukaemia I prided myself on my brilliant memory!!

This is actually well known by other cancer patients, I have spoken to a few and luckily we can laugh about it.  However, at the same time its a little worrying as so far I've managed to get away with it, there might be a time when my forgetfulness causes some damage!  Now I check my diary several times a day, ask others around me to keep reminding me of things and write lots of lists!  I am hopeful that in time this will improve!!

My life is full of post it notes!

Here is a link where you can find more info
http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/side-effects-of-chemotherapy/chemo-brain.html

Hundreds of Messages of Support!!

So recently I felt emotionally strong enough to look through my Facebook timeline at all the messages I'd received when I was very suddenly taken ill!

When I started to read them the fear and panic started to bubble up again, I try to ignore these feelings most of the time!  I knew this would be hard but really wanted to do it as my memories of this time are sketchy and I want to make sure I thank everyone for their support!

I've always had a really good memory so this is my first experience of forgetting things that have happened!

When reading these messages I felt incredibly touched and loved and do remember at the time that they really helped!  I was often to ill to reply but did read them all!  I've also kept a lot of the text messages and reading these again was very interesting as for the first 24 hours when I was in hospital they told me I had sepsis.  I have a group of friends from school and we chat via whatsapp, when I messaged to see if they were all available at the same time as I had some news...one of my friends thought I was pregnant!  One of these friends lives in Australia and was so upset she was looking at flights to come and support me!  Reading these messages again has been really emotional as I had forgotten this, their reactions are heartbreaking.  They have since told me that they will never forget where they were and who they were with when they got the dreadful news, a bit like when a big world event happens and you always remember where you were and what you were doing when you first heard the news!   I had messages from people I haven't been in touch with for years and reading the messages now had really made me smile!  I am going to message each person to thank them and aim to keep in touch from now on!

The outpouring of support for me in my town was phenomenal and still is, I am so lucky.

Below are some of these messages!

Cancer Fighter!!!