Chemo 2 - Day 1

Tuesday 26th February, 2013

After a week long delay for me to recover from my hospital spell, I finally get around to chemo session number two.
I arrive at the chemo unit at 1:00pm and after much vein prodding a cannula is put into my arm. The nurse suggests that I have a picc line inserted especially if I'm unlucky enough to end up in hospital again. The problem that I have, apart from rubbish veins, is that nurses can only take blood from my left arm. This is because I had lymph nodes removed from my right armpit so there is an increased risk of lymphoedema. This is a long term condition that causes swelling in the body's tissue. This can lead to pain and loss of mobility. I can't even have my blood pressure taken on the infected side.
A picc line is a tube that is inserted into a vein in your arm and travels all the way up and down to just above your heart. It stays in for the duration of treatment and all bloods can be taken from there as well as any drugs that need to be given. It means no more bloody needles or bruises for me....or cannulas in my bloody feet!!
The picc line will be fitted in a few weeks time and will make life just that little bit easier.
I am given a new drug called Emend followed by my steroids. At 2pm my chemo is administered and by 3pm I am free to go home with my usual goody bag of take home drugs.
I feel surprisingly well for the rest of the day. The horrible smell that I had up my nose after my first chemo doesn't seem to be bothering me so much this time round. If anything, by the evening I am feeling a little bit weak and I have a bit of a headache.
I don't have dinner but I do manage a cheese and ham toastie and hubby offers me ice cream for pudding but its just too creamy and I can't stomach it. I spend the rest of the evening munching on ginger biscuits.
I fall asleep about 11pm but I'm awake again at just after 3am feeling a little bit clammy. I still have a headache but I'm not feeling sick. I do start stressing about my meds though as they have slightly changed from last time. I can't remember the instructions the nurse gave me. I will have to phone the chemo unit in the morning.

I do not get back to sleep YAWN!!

Instead I watch Planes Trains and Automobiles and read a whole book as well as chatting to myself on Facebook.
I also have a little go on twitter and I find De La Soul. I send them my audioboo of me "singing" Me Myself and I. Much to my delight DJ Matheo sees it and puts it into his favourites section. This made me giggle. I did apologise for killing their work.

FECKING FEC!

So I'm home after 8 days in isolation at Stoke Mandeville hospital. The lovely chemo combination that is known as FEC seems to be doing its job. It's killing cells. Sadly it killed ALL my white blood cells leaving me with no immune system and then I goes and gets an infection. The official medical term is neutropenic sepsis.
Two antibiotics were pumped through my body. The first antibiotic was a drug called Meropenem. This was given to me three times a day. The other antibiotic was a drug called Gentamicin, which was given via a drip every 24 hours. I have not googled either of these drugs as there may be a chance that I may need them again over the next four months. I know that Gentamicin is particularly strong though as I had to have daily blood tests to make sure that my kidneys were functioning properly. It can also make you deaf.
My white blood cells are slowly coming back and on Tuesday I have chemo number 2 and we start all over again.
The other thing to happen whilst in hospital was my hair began falling out. I tried waiting until I got home but it was becoming too distressing to see it falling out everywhere so it was time to get the graders out.
Two days prior to my hair falling out my head went very numb. A very odd sensation but I'm guessing that was all the hair cells dying off.
I had a good cry, which I was quite surprised by as I really didn't think that losing my hair would bother me so much. It's the psychological matter of suddenly looking like a cancer patient. It's obvious to everybody now but once it was gone and I had a good look in the mirror it was clear I was still me. It didn't make me look or feel sicker. Just balder.
It's weird to be home and I felt very shaky. I think that's just not having the safety net of nurses on call and isolation. I am beginning to settle though and my god am I looking forward to a decent meal. I love the NHS but the food is truly disgusting. In fact it's an utter disgrace.
Chemo brain is kicking in also, which is most bizarre. The nurse asked me my date of birth and I had to think for a good minute and I'm forgetting what I am talking about mid sentence.
Right now I'm pretty whacked out but as my cells keep multiplying then my strength will come back too.
My next chemo dose is going to be reduced so hopefully my body will cope better next time. Fingers crossed. At least I have 4 medicine free days until then.
1 down, 5 to go *faints*

Papa Smurf

That's it. I've had enough. I can't do it. I won't do it and YOU CAN'T MAKE ME.

Wednesday evening and I go to bed around 8:00pm. I kid people that I'm feeling much better now when they ask but if I'm honest I'm still feeling ghastly since my chemo, which was over a week ago. Hubby has had a letter handed to him at work as they are not happy with the amount of time off he has had and a friend of the family who is also going through chemo is going back to work just days after each session. Both these things are making me feel under pressure to do "better" at chemo.
Hubby returns to work and I go to bed. By 9:00pm I'm feeling really very cold. I don't have a temperature but I know that I'm definitely having chills. I don't feel well and I know at this point I should be calling the hospital as this is a sign of an infection. I have leaflets, carry cards and my chemotherapy carry book full of BIG RED LETTERS stating which symptoms require immediate emergency treatment. If I do have an infection then I need antibiotics within the hour especially as my body could be lacking in white blood cells.

I DON'T CALL THE HOSPITAL.

Instead I lay in bed worrying about hubby getting in trouble at work and people thinking that I'm being a drama queen. Eventually I nod off.
I wake up at 1:30am and go to the loo. I don't feel good at all. I feel very spaced out and weak. I take my temperature. It's 38.4...... I have no choice now. I call the hospital and I'm told to go straight to Stoke Mandeville accident and emergency department. The registrar knows that I am on my way and I will need to pack an overnight bag.
I call hubby, who has to leave work two hours early, to come and collect me.

On arrival at hospital I am put into a side room away from other people and a whole range of tests are performed. I have all manner of bloods taken, heart trace, chest x-ray, urine and blood sugar levels. No stone is left unturned.
After all tests have been completed, I am then hooked up to a drip and two lots of IV antibiotics are pumped through me. One of the drugs makes me cough as it goes through but it soon passes and I think no more about it.

An hour or so later and I am visited by one of the oncologists. I am told that my blood tests are showing that I am neutropenic and that I will be in hospital for around five to seven days.
Being neutropenic means that the chemo I was given last week has killed my infection fighting white blood cells. I have an infection but no immune system as such to help my body fight it. It's down to the antibiotics to do the fighting for me. I ask how low the count was and she informs me 0....nothing...oh!
I am taken up to the ward where I will spend the next few days. I am put into isolation as I need to be protected from any risk of further infection. My room is lovely though. I have a nice plasma tv on the wall, my own bathroom and fridge.

I am given my second dose of antibiotics after lunch and it makes me cough again. My palms also begin to sweat a little. I mention this to the nurse and she fetches a doctor. The doctor gives me the once over and tells me that she thinks I'm having a slight reaction to the penicillin. My antibiotics will be changed and I'm given a red arm band to wear to show that I'm a fussy bugger when it comes to medicine.

It's fair to say I'm feeling pretty awful. I feel weak, old and ill. Just going to the toilet takes all of my strength and I have still got 5 more rounds of this to go. I cry. I can't help it. I cry and I can't stop. The oncology nurse comes to sit with me and tries to turn this experience into a positive. She tells me to not think of it as 5 more to go but think of it as one done and out of the way. I get what she is saying but this one isn't out of the way yet because I still feel so very ill and in just over a week and a few days I've got to do it all again. I just want to be better.

Hubby arrives later with cards from the kids. This cheers me up no end. I will also leave you with a picture that my eldest daughter sent to me. She sent it with the message "I am papa smurf" It made me proper giggle.

And that is the reason why I'm doing this. Because I need to be around for as long as possible. For my kids.

I can do this. I will do it BECAUSE MY KIDS ARE MAKING ME.

Chemo 1 - Day 7

Fell asleep around midnight last night but woke up about an hour later after having a REALLY vivid vomiting dream. I had removed my travel sickness bands before sleeping and am now wondering if this is what may have caused this dream. Needless to say the travel sickness bands are now back on and they won't be moving! Trevor McDonald is going to have some troubles getting that sick off his suit too. Sorry Trev!
It takes me a good couple of hours to settle back down from that dream. It really weirded me out, but by 3:00am I am drifting off again and manage to last until about 6:00am.

I was totally at a low this morning. Today it has been two years since I lost my dad. I can't control my sobbing and I want my dad so much. I always felt safe with my dad around. He was such a lovely man and I think back to all the time I spent with him as a little girl walking our dog and digging in the garden. Life was good and fun and worry free and now it's, well, I guess.....real.

I feel totally depressed and tell hubby that I've had enough, I can't do this. I want to completely give up and am pissed off with the fact that my eyes even opened this morning. This is just the beginning of my chemo journey and , to be fair, I've had a pretty easy ride so far, but looking ahead to the next four months just completely overwhelms me. How am I going to do this? How does anybody get through this?.......and then what if the cancer comes back and then I have to do it all again? My brain goes into overdrive and I crash. There is snot and everything!

8:30am and hubby decides that I should do a shopping list! A SHOPPING LIST FFS!
I want to tell him to stick his shopping list where the sun don't shine. Can he not see the state I'm in. Idiot.
My brain can't function on the task and I soon become very frustrated and yet more tears flow, but after about an hour and with some very patient help from hubby the list is done and he heads off to Asda. I feel slightly chirpier and get up and wash my hair and change into some clean pyjamas. It suddenly becomes apparent the distraction technique that hubby has just used on me. OH HE'S GOOD.

Hubby was meant to go back to work tonight but is going to take one more night as I'm still not ready. I'm 37 years old but so afraid to be left alone right now. I'm scared that I will have a funny turn or have a panic attack. I've got to try and stop thinking about bloody panic attacks!

By lunchtime I am feeling so much better and eat the biggest cheese, ham and tomato sandwich I have ever seen. Unfortunately this is soon followed by bright yellow diarrhoea, which is quite alarming.

I'm not quite up to visiting my dad at the crematorium today so I decide to switch on the television and see what films are on. Low and behold there is a John Wayne movie on called The Man Who Shot Liberty Valance. I would always watch this with my dad when ever it was on TV and its one of my favourite films. I take this as a sign that my dad is with me and settle down to watch the film with a smile on my face.

My appetite returns with a vengeance today and the plate of med veg and pasta that hubby cooks for me goes down a treat. So many smells and flavours, oh how I've missed them. The only downside is that this is soon followed again by another trip to the loo with yellow diarrhoea. My stomach does settle and it only seems to happen after eating but I will mention it to my oncologist tomorrow. My anxiety levels are probably speeding things up a little too.

My mum calls me late afternoon to see how I am and she lets me know that she left some flowers with dad from me. This makes me feel better about not getting to go myself.
She informs me that my brother has told her about this blog and she would like to have a read. I send her a link and she confirms that she has it. Her first words then are "Oh Lorna, there's swearing in this" I have a nervous little giggle but as soon as I'm off the phone I'm checking to make sure there is nothing too bad. I think I'll be ok.
I hope she enjoys the read.......HI MUM

The rest of the evening goes by without much bother and I am asleep before 9pm. I wake a few times but only for short periods.


Oh, before I go I will leave you with a picture of my new soft toy. Hubby and son picked him up for me when they went shopping. He was a lovely surprise and I think I'll name him Reg.

Chemo 1 - Day 6

After a fairly good nights sleep I wake up about 7:00am. I am feeling anxious this morning as hubby is taking our son for his usual rugby training and leaving me alone in the house for the first time.
I have toast for breakfast and my stomach is making the loudest gurgling noises I have ever heard it make. My tummy feels very unsettled but I don't feel sick, just very much out of sorts and my anxiety level is creeping up. I go to the toilet and whilst in there a little bit of sick comes up into my mouth from nowhere. This causes me to have a little split second panic but I manage to keep everything down and decide that I need to get myself as relaxed as I can again. I tell myself that I'm feeling this way just because I've been left alone for the first time since chemo. My body has had quite a nasty shock and its only normal to feel so utterly ghastly! I'm just so afraid of having a funny turn or throwing up. My brain really knows how to wind me up.
I lay in bed and start writing my diary and I soon start to feel a little better.

Today ends up being the worst day so far. This hits me hard, especially after having such a great day yesterday. I feel EXTREMELY weak and spend the entire day back in bed like a useless raggy doll. I manage to sit up and eat small amounts but I can't sleep and spend a lot of time with tears rolling down my cheeks. I just can't seem to get a handle on things at all.
Distraction usually helps but even just lifting up a book or my iPad takes so much effort.
Friends have left me text messages and messages on Facebook etc and I just can't be bothered to respond. I feel bad about this but I am sure they will understand.

Tomorrow will be the second anniversary of my dads death and I'm not sure how much this has had an impact on me today. It's certainly playing on my mind and I hate the fact that I might not be able to go and visit him at the crematorium.

It's shit. Everything is just so very very shit.

Chemo 1 - Day 5

Had about three hours solid sleep but wake up feeling surprisingly good. I am not feeling hot so hopefully the flushes will leave me alone for a while. I don't have to take any steroids today as that course of tablets has finished now. I feel a little bit apprehensive about this as a few women have commented about feeling very low during this period. I try not to think about it too much though and just figure that I can only go with the flow. At least I am aware of it and feel some what prepared should it happen.

Hubby is taking our son to rugby today for a special training day with the London Wasps and then they are going to be watching the match afterwards. As I'm a bit nervous about being left alone for most of the day my mum and step dad come up to babysit me.
I get up and have a wash and go downstairs to say hello. I feel pretty strange being downstairs after spending the last few days in bed but I soon start to feel better. I end up actually up and downstairs for most of the day.
We watch old re-runs of Only Fools and Horses and have some lunch and just spend some time chatting. I feel almost human again.

At 2:00pm it's down to my mum to give me my cell boosting injection as I'm still not brave enough to do it myself yet. I go through all the instructions with her and I prepare myself ready for the shot. My mum approaches me with the needle and then right at the last second backs out. She apologises and then tries again for attempt number two. This time the needle touches skin, but she jumps up once more telling me she can't do it. This is making me laugh but at the same time anxious as I'm gearing myself up only for mum to keep buggering off again. Finally, on the third attempt, the injection is given.

About 4:30pm my brother, his wife and my adorable little niece arrive with a surprise visit. I'm so happy to see them but feel a little bad as being up all day is starting to take its toll and I'm beginning to fade. I can feel myself nodding off so they only stay for a cup of tea and then head off home after about an hour.
As soon as they leave I decide to get back into my bed and I have to say I was more than ready for it. At least now though I can see a light at the end of this week and I know it won't be too long before I am up and about as normal again. Also if this is the worst that I am likely to feel after each chemo session then really I'm very, very lucky.


I am fast asleep by 7:00pm and sleep through until about 1:00am. I'm only awake for a couple of hours though and by 3:00am I have drifted off again.

Chemo 1 - Day 4

So, I managed to get myself six hours sleep last night. Extremely happy about this although it did leave me with a bit of a headache and a very furry tongue. I drink a few glasses of water to help with this but the water has a strange taste to it today.
I take my steroids at 7:00am and once again become very aware of my heartbeat. This usually calms down by about lunchtime and today is my last day of taking these tablets so maybe this sensation won't be with me tomorrow.
10:00am and I get to have my first poo since chemo. This is a lovely treat and has been very much worth the wait. I also have the strongest urge for a hot cross bun. Hubby gets on the phone to his mum to bring some up with her. I just hope that my stomach agrees with them when they get here.
I notice a few hairs falling onto my iPad screen this morning. This comes as a bit of a shock as I didn't think that this would start happening until the 2-3 week mark. My hair isn't coming out in great clumps but just a strand or two every now and then. When I brush my hands through my hair I am also noticing 4 or 5 strands of hair in my hands.
12:00pm and the mother in law arrives with the hot cross buns. She also brings me a lovely bunch of flowers and some ready salted crisps. I manage to eat and enjoy a cheese and tomato sandwich followed by the hot cross buns and my word they were DELICIOUS!
I'm also managing to tolerate a little bit of orange squash with my water, which helps to take away the funny taste a bit. It's nice to finally be getting some flavour again.
4:00pm and I start to feel a little peculiar. I feel very hot but again I have no temperature. I open my window a bit and lay on my bed and try to relax. I hate feeling odd as this is when my anxiety starts kicking in and a panic attack could strike. I have to try and break the vicious cycle and try to distract my mind from the unpleasant sensations.
I play a few games on my iPad, try watching a bit of television and start writing my diary for today. This all helps to calm me a little bit but by 5:30pm I am still not quite myself, a bit jangled if you like. I'm sure I will be fine once these hot flushes pass.
I manage some plain boiled rice and peas for my tea followed by some watermelon and another hot cross bun but the hot flushes are really not easing. I have to get hubby to switch off the heating in the rest of the house and open my bedroom windows as far as they can go. I spend the rest of the evening laid on my bed in the starfish pose with cold flannels on me, trying my hardest to ride out the sweats. I feel absolutely drained, no energy what so ever and I am desperate for some sleep. Unfortunately I can only manage some light dozing for periods of half an hour at a time.
I eventually get to sleep by around 3:00am but I am wide awake again by 6:00am. I think the hot flushes may have gone though. PHEW!

Chemo 1 - Day 3

I wake up just after midnight and something evil's lurking in the dark.....oh no wait, that's Michael Jackson. I am however awake FOR THE REST OF THE NIGHT! Bloody steroids! But, bloody steroids that are stopping me from puking so just stop your moaning woman!!
My throat feels a little bit dry and I worry that it's the start of a sore throat as two of the kids have a cold at the moment. I take my temperature and its fine and my throat starts to feel much better after a few glasses of water.
As its obvious that I won't be getting back to sleep just yet I switch on the television and watch three episodes of Gavin and Stacey followed by the film Wild Hogs. I then read half a book and just generally messed about on my iPad. Not sleeping is extremely boring.
By 4am I was really, REALLY hungry again. This is another wonderful side effect of the steroids.
I don't want to disrupt the whole house though by going down to the kitchen so I just start nibbling away at the ginger nuts again.
6:30am rolls around and it's time to get the kids up and ready for school. Hubby brings me up some toast and I take my first lot of steroids for today. My heart feels like it is racing and I have felt like this for the last few hours. I am not having palpitations as such but I am just very aware of my heart beating. I take my pulse and its going at 90 beats per minute which is ok, if just a little fast for me when resting. I decide to relax and try to slow my breathing down and this helps to bring my heart rate down to 77bpm and I manage to sleep again for an hour or so.
9:30am and I get up to brush my teeth and have a wash and I am aware that I feel very weak, almost flu like but without the temperature. I know that this is a normal side effect of the chemo so I try not to feel too alarmed by it. I decide that the best thing is a day in bed to just relax and ride it out. Hopefully I will be able to catch up on some more sleep too.

12:00pm and its time for my second dose of steroids. I manage to eat a bowl of plain pasta followed by a bowl of mixed fruit for my lunch. The watermelon is about the only thing I can really enjoy as my brain still can't quite decide what my stomach fancies.
My sister arrives around 1:30pm to visit me and this provides a welcome distraction for a couple of hours. She brings chocolate cake with her too so that was a happy bonus, although I can't quite face it at the moment. She is also here to witness me have todays cell boosting jab and cheers me on with shouts of "Don't look at it" but I can never seem to help myself.
By 3:00pm I am feeling much better than I did this morning and decide to train my brain with a bit of Countdown. I am rubbish.
6:00pm and I am starving hungry again. Hubby makes a lovely chicken and bacon pasta, which I know is delicious as the kids just wolf it down. I , on the other hand, can't stand the smell of it and I demand it be taken away from me. I have a cheese and ham toastie instead. I'm now getting fed up with not eating properly and pathetically start to cry. I remind myself that a few days ago I was petrified that at this stage I would still be puking up and that all things considering going off my food is something very minor. MAN UP, WOMAN!!
After eating my toastie I do manage to squeeze in a couple of hours sleep and wake up just in time to watch the Big Reunion on ITV2. This is a show that is reuniting bands from the 90's. one of these bands being 5ive. Now at the age of 37, I'm not ashamed to admit that I love a bit of 5ive, so to see them on my telly box once more cheers me up no end. I spend the next hour smiling and having a little bed dance.....like you do.
I finally manage to get to sleep around midnight and I don't wake up again until 6:00am. I am very happy about this!