Final chemo cycle!! Day 1

It's over!  At least, getting the stuff put in is over, and I am over the moon.  Had a little wobble at the hospital but the nurse said that is entirely normal and I wonder if it got me fast tracked a little. 

As usual, started feeling woozy about halfway through it getting put in, but it wasn't as bad as the previous two sessions.  Got unplugged and then got out of there as quickly as possible.  Started feeling tired on the way home, so went straight to bed (it was about 3pm) and dozed then slept pretty much till 9.30am this morning.  Had DD2 in bed with me all night, so that was lovely too.

Still feel dozy today but better.  Looking forward to the head stuff going, hopefully in the next 24-48 hours, but not looking forward to the muscle ache which will most likely be at the weekend.  But I have a ton of codeine and sleeping tablets to get me through, plus my wonderful family and friends who are the bestest ever.

So, hopefully, by this time next week, I can start getting back to normal and preparing for the stupid Hickman line to come out (15th Nov) and radiotherapy to start (16th Nov).  Both of which will hopefully be fine.  Oh and I get 5 years of a hormone pill too, but can talk about stopping that after 2 years for various reasons....

I will also need to rename this blog I think.  Thinking along the lines of 'My Kicking Cancer's Ass Blog' but any other suggestions welcomed!!

Chemo cycle 5: Days 7 - 10

Day 7:  woke up feeling much better although still pretty sore and tired.  Spent the day with DD2 which was lovely, lots of cuddles on the sofa! 
 
Day 8:  We booked DD2 into nursery today so I could keep resting.  Which I did!  I had a couple of paracetomol in the morning, but that was pretty much it all day.  The soreness was fading!  Still had achy gums, nails and chemo mouth though.  Bah.  Got a handy tip, that tonic water helps with the taste - and it does!  Better stock up for next (and last) time!

Day 9:  A much, much better day with no painkillers at all!  The chemo mouth was fading and the weird aches and pains were much, much less.  Took the DDs to get their hair cut at friends' house and had a lovely time.  It was brilliant to get out.

Day 10:  today.  In theory, today was the last day of my recuperation.  But DH realised this morning that he couldn't do the school run and, do you know, I fancied it!  So I did - boo sucks to germs!  (Although there was a man coughing right by me, of course.  But I moved.)  Then had a nice morning pottering and managed to have a semi-decent lunch that tasted almost right, before collecting DD2 and avoiding coughing people.  I feel much, much better today and am looking forward to a week and a half of normality before MY LAST CHEMO SESSION!!  I can't wait for it to be over.

Chemo cycle 5: Days 4 - 6

I was right about the muscle pain.  It kicked in on Friday (day 4).  I basically spent the day on the sofa with my codeine within arm's reach!  My head was still funny as well, so I couldn't read or do very much apart from watch the Commonwealth Games (yay go England!).  I managed to stay up till about 7.30pm.  What a fun Friday night!

On Saturday (day 5) it was pretty much the same, although my head felt a bit better.  However, I still couldn't read so more telly for me.  Hurrah for Twitter which makes me feel slightly more interactive than I would feel otherwise.  Had a glass of wine for the first time in about a week, followed by more codeine and sleeping tablets in the hope that I would get a good night's sleep and wake up refreshed and ready to go.  Managed to stay up till almost 9pm.  Whoo!

Sunday (day 6) was a lot better; my plan worked to some extent!  I slept quite well and woke up, still sore but feeling more like myself.  DH warned me not to do too much though, so I did just spend the day resting even more and catching up with the X Factor and Hell's Kitchen!

So symptoms over the past 3 days have been: muscle ache and spasms, nail ache, tooth and gum ache, chemo mouth, sore throat, stupid brain. 

This morning (day 7) it's A LOT better.  Still sore, but it's fading.  But my blooming nails still hurt which is just bizarre.  But I plan to do more than chill today.

Chemo cycle 4: entire

Well, thank you Google blogger for realising that this blog isn't spam and I can have it back now.  I'm pretty annoyed about it, as cycle 4 was the first of the new stuff (I think it's called Docetaxel) and my symptoms were completely different and now I have to remember.  Shouldn't be too hard though.  I'm now on cycle 5 and I am remembering.

Cycle 4 wasn't too bad.  The main problem was that my muscles just ached, all over, from the top of my head to the tips of my toes.  I had to get the doctor out on the Monday following chemo as it was so bad that paracetamol wasn't working and I couldn't sleep due to the pain.  And following that I managed to get a cold that lasted pretty much the rest of the cycle.  What a joy.  And then I repeated on Tuesday....

Chemo Cycle 4: Days 1 & 2

Woo!  I am 2/3 of the way through, thank goodness!  I won't bother writing a separate blog about the end of cycle 3 as it was quite nice, Muse were fabulous and I had no major symptoms.  So I will start off with how yesterday went...

Day 1:  Saw the consultant who confirmed that my drugs were to be changing from FEC to something else (don't remember the name).  However, she said that if I hadn't been sick so far, these drugs were unlikely to chage that - if anything, they may be a bit better.  She also confirmed that I needed stitches removed in the Hickman line (yuck) and said that she would ensure that the day unit knew. 

Went through to the day unit and finally was shown through into the public area.  I mentioned about the stitches needing to be removed - bearing in mind they were in the chest area and I didn't fancy stripping in front of everyone - and they seemed surprised, even though I had heard the nurse talking to them!  Argh.  And to give an idea of how far away the two units are, I would estimate about 15 metres.  Double argh.  So I managed to get into a private room.  I was hooked up with no problems, told it would be about an hour and then the nurse said she would remove my stitches.  I panicked.  I don't know why though - I have had stitches removed before and know it doesn't hurt, but I did.  But the nurse was great and talked me down and tried as much as possible to relax me, and finally the stitches were removed.

And then I started feeling yuck. I couldn't concentrate on my oh so difficult Grazia and I couldn't play on my phone.  I felt sick but not sick (I know) and spinney*.  I was lying back, but felt like I was going to fall down.  I felt hot and cold.  It was awful.  I was literally counting down the minutes until it was over.  They then flushed me out and I felt a tiny bit better but ugh it was horrible.  DH took me home after we had to faff about for my next appointment and I went straight to bed.

Day 2:  Woke up feeling more refreshed but still tired.  My mum is here, so she took DD1 to school and DH took DD2 to nursery, so we had quite a relaxing morning.  Until I looked at my drugs and realised that one was missing.  So I phoned up the day unit who said 'oh yes, here it is in our fridge.'  Another argh.  So when DH came home early to take me to the radiotherapist, we had to first go to the main hospital to collect those drugs.  So about 40 mins to get those and then say, 25 to get back to the local hospital in time for my radiotherapy appointment.

And yes, I am going to need 5 weeks of radiotherapy, starting the end of November.  They will give me 3-4 weeks after the last chemo to recover and then I start that, every week day.  And yes, that means I will be having to go in over the Christmas holidays, although I was told Christmas day is a Saturday so I won't have to actually go in that day (not that I think I would whatever day it happened to fall on, but you never know) thank goodness.  PITA.

I'm not sure what to do about work though, as apparently you don't really get many symptoms from radiotherapy apart from tiredness.  (My friend pointed out though, if I am going to have to do that blooming drive every day, of course I will be tired!)  So I think I will see how I feel and take it from there.

Boo hiss to cancer.

*spinney in my world - how one feels when the world is spinning around, similar to dizzy.  It is not a bushy copse.

Chemo cycle 3: Days 12 - 16

These last few days have been brilliant.  I have felt normal and have been able to get on with (most of) my life, thank goodness.  The only weirdness is that my eyes have been dry and itchy over the last day or two - which happened last cycle as well.  I do have some eye drops for that now though, so that's good.

I am not really looking forward to next week though.  I have blood tests Monday, chemo on Tuesday and then an appointment with the radiotherapist on Wednesday to discuss whether or not I will need that as well.  Fingers crossed I won't, but a lot of people have said that they often do it now as a preventative measure so I guess there is a large chance I may.  *Sigh*  That would make an additional 3-6 weeks of treatment possibly.

However, I am not going to worry about that now and quite frankly, I should not worry at all as there is nothing I can do to change what will be.  I will go with whatever they recommend.  I am going to enjoy the rest of this week and the weekend, when I will be seeing Muse at Wembley.  Yay!  So super excited!

Chemo cycle 3: Day 10 & 11

Day 10: first day back to school for DD1!  We all took her in as a family, to meet her teacher and figure out where things were.  I then had a nice time at home doing some chores and resting before picking her up.  I do wonder if the other parents wonder why I am wearing a headscarf but who cares really?  I suppose if they are that bothered they can always talk to me....

I was pretty exhausted in the evening though; I went to bed at 9!  Guess laundry takes it out of me somewhat.  Lolz etc.

Day 11 (today):  Took DD1 in, had a lovely time at home and collected her.  She helped me bake a cake for a friend too which was nice - looking forward to celebrating his birthday tomorrow!  Tonight I plan to drink wine and watch Big Brother and other trash tv.

So all in all, things are on the up.  I am starting to feel more human and normal and can have a nice week and a half before the next round, hopefully.

Chemo cycle 3: Day 8 & 9

Day 8 was the worst.  I felt awful and it's indescribable.  A friend of mine who survived breast cancer said she described it as a bad flu, but even that doesn't cover it.  I was exhausted and more.  I felt like I was in a fog, that I was going to faint even when lying down and even a bit sick but not queasy.  See what I mean?  I can't really explain.  But basically, it's horrible.  Both girls were home, and even with DH working at home to help, it was still very difficult.

Day 9 I could feel I was starting to come out of it, but I still felt pretty rubbish.  I was home with DD1 all day and she kept me company and was lovely, so it was a nice day even though I felt so bad.  By the evening, I had enough energy to go to a friend's house to get the girls' hair cut - majorly overdue and urgent with school just about to start again!  Had a terrible night's sleep though.  The hot flushes really don't help.

Chemo cycle 3: Day 6 & 7

Still exhausted - more so than before if that's possible!  And still got the flipping gross taste in my mouth.  But thank goodness for my husband who has held the fort, entertained the girls and cooked the best roast ever that actually meant I could eat for the first time in 24 hours today. 

Surely the taste should be going soon?  Even the wine tastes a bit off - although not enough to stop me enjoying it!

Chemo cycle 3: Day 4 & 5

Not a lot to report.  Very tired still, a bit foggy and that horrible metal taste just won't go away. 

Had a lovely day with friends on day 5 though, which really cheered me up and has certainly helped!  I am sure the copious amounts of wine had nothing to do with it.

Chemo cycle 3: Day 2 & 3

Apart from the sickness feeling on day 1, the only real symptom so far has been tiredness.  However, yesterday (day 2) I started to get the strange metal taste in my mouth and it's still going on.  The first cycle, I only had it for 24 hours around day 7, the second cycle was more like 3 days whilst I was in hospital (so days 6-8 at a guess) and now it's earlier.  Argh!  As long as I can still drink coffee and eat, I suppose it's not that bad but it's pretty nasty.

Had to get the dressing on the Hickman line changed yesterday by a nurse at the local GP.  They hadn't done a very good job in the chemo department, probably as they were so snowed under.  I feel like an electrical appliance and it's catching everwhere! 

Chemo cycle 3: Day 1

Hurrah!  Finally got my third cycle completed and I am halfway through my treatment!

Apart from delays in the day unit, it went perfectly.  They took off my dressings which I was worried about, but it was fine, and plugged me in and away I went!  I was in a room with a few other people getting chemo this time (rather than a private room) and it was interesting and nice to chat to some of them.   The only symptom I had was the tingly nose, right at the end.

Felt a but woozy in the car and was very tired by the time I got home.  I relaxed on the sofa, had a meal but then started to feel extremely tired and a bit sick so I took the anti-sickness pills and went to bed.  Dozed on and off until the end of Big Brother, so I know who won and I know who's in the Ultimate challenge!  Not a bad start.

However, the consultant did mention that my drugs are changing from the next chemo, so I am slightly anxious about that and what they will do to me.  But no point worrying now - will just have to get through this cycle first!

Chemo cycle 2: Day 26 & 27

We'd booked a night at a hotel for me (well, all of us really) to relax and recuperate.  It was mostly lovely apart from an incident with some dodgy towels, and the fact the pool was closed to children from 10am - 5pm.  However, today I had a horrible experience at their spa.

I'd booked a facial in person yesterday.  I think it's pretty obvious to most people that I am undergoing something seeing as I have no hair and bandages poking out from under my top.  But they booked it fine, no problems, no queries.  I got there this morning and had to fill in the standard medical form.   After the lady took it from me, I could hear her and the bloke who had booked me in whispering loudly at reception.  It was clear it was about me.  There were other customers present.  After a few minutes, she came to me to ask what sort of cancer it was.  I told her it was breast cancer but I have been advised facials aren't a problem.  She left again, only for me to hear more whispering at reception, and still there were other customers present.

I went over and asked if there was a problem.  They said there was, that they weren't sure I could have a facial.  Again, I explained that I have had facials since I was diagnosed and have been undergoing chemo but I've been told it's just the massage side of things from the neck down and ankles up that need to be avoided.  Then they told me that about half of their facial is actually a neck and shoulder massage.  Eh?  What kind of facial is that? I know there is some element of massage in a facial, but it's usually been a small proportion of the treatment and therefore, therapists have just worked around it for me - one gave me a foot massage instead.  They kept on arguing with me, making me feel small and in the wrong.


By this point I was super stressed and angry.  They were being really obnoxious and dense and just shrugging at me and arguing with me, offering me no alternatives to one of their facials.  Had one of them come over to me and privately said, we don't think you should have this facial as there is a substantial element of massage which we don't think is appropriate, would you like e.g. a pedicure or manicure instead, I would have said, fair enough, yes please.  I just wanted something to help me relax!  But it was the loud whispering in front of other people, the way they were trying to argue with me about a facial, like I was the one in the wrong.  No-one was wrong, and I understand why they were concerned, but I was made to feel small and stupid.  So I just told them to cancel the appointment and stormed off back to the room.

DH was cross on my behalf and we decided to inform the manager when we checked out.  I had moved from angry to really, really upset.  The manager couldn't have been nicer and agreed with DH that, instead of treating me as a problem, the staff should have found a solution.  So to his credit, he is going to talk to the spa manager so hopefully no-one will be made to feel as awful as I was made to feel.  And I think I get a complimentary spa day as an apology, although I am not sure I do actually want to go back there.  But we'll see.  And on Tuesday I am going to ask my oncologist again exactly what I can and can't have so if it happens again, I will be super informed.

Chemo cycle 2: Day 24 & 25

Day 24:  I had planned to have a lazy morning with DD1, waiting for this blood test form thing to arrive in the post and then wander on down to the local hospital to get it done.  But no!  The oncologist's secretary phoned at 8am saying that the form wasn't posted the previous day, as it would have not actually gone till this morning and arrive Friday at the earliest.  So I had to go to the main hospital with DD1 before 12 and wait for ages to get it done there - no priority as everyone is an oncology patient - so that was the entire morning just gone.  But DD1 was brilliant, so patient and good so I rewarded her with the Tinkerbell film after lunch and that was lovely.

Day 25:  Can I just say, I love the NHS.  I wouldn't give it up for anything.  But I had the worst day and it was all due to NHS bureaucracy and cock ups.  DH and I got there at about 8.30am only to be told by the main receptionist that she had never heard of me and didn't know why I was there.  I explained and told her what my oncologist's secretary had said, so she went off to find her. 

That sorted, I was then told to go to the day unit.  They had also never heard of me and didn't know why I was there as Hickman lines (not a PICC line after all) were done elsewhere.  I explained, phone calls were made, and eventually they figured out that I was supposed to wait in the day unit until the Hickman line team were ready for me - after lunch.  (So why was I made to come in at 9am?  Who knows!)  DH and I had breakfast and then went to the Macmillan centre and chilled out. 

By about 2.30pm I was wondering what was happening and went back to the day unit to chase.  The same receptionist was there, so off she went to find out what was going on.  I could see a discussion going on between her, nurses and with what looked like porters in the back.  Eventually she called me over and the porters (for that's what they were) explained they had been searching for me!  The notes had said I was still in the ward!  (Yes, I left the ward over 2 weeks ago.....)  Anyhow, they took me upstairs and I got my Hickman line inserted.

The op took about 30 minutes.  It really hurt, even though I had a local anaesthetic.  It went into the side of my neck and down, and comes out just above my breast.  I think there is a little tap that they will be able to plug me into, but I am all bandaged up and am not allowed to remove it for a few days.

That done, I returned to the day unit and waited.  Had to badger them to take my blood pressure and temperature as per my notes.  I asked when I could go home - the answer?  Not until you've been up to the ward, checked over and discharged.  I don't know why they couldn't have done it!  So off I went, wheeled in my bed to the ward.  And we waited, and waited, in the same room I had had before.  Finally, at about 7.15pm after much more badgering, the sister came in, checked me over and said we could go home.  Phew!

Again, I will say how much I adore the NHS.  But we had nearly a 12 hour day at the hospital for a 30 minute operation and a 2 hour observation period.  And we had only breakfast all day.  I am sure this isn't the best use of resources or anyone's time!  But I shouldn't complain, as at least I am getting the treatments I need.  It's just a real faff, and extraordinarily tiring for all of us.

Roll on Tuesday for my next chemo!  Fingers crossed it now goes as planned.

Chemo cycle 2: Day 23

I was quite shocked to receive a call from the oncologist fairly early this morning (well, about 10.30am) confirming that my PICC line will be fitted on Friday!  However, nothing is as simple as it seems.  I need another blood test the day before and for that I need a form from her.  It can't be done at the local hospital, so I have to wait for the post in the morning and hope this form is there.  Then I get to go to a nearish hospital for the test.  However, if it doesn't arrive I am not sure, but I think I have to call the main hospital and go there.

The following day (Friday) I must go to the main hospital for 9am and wait until called.  It could be any time so I'd better bring a book!

Chemo cycle 2: Day 22

Well, as you can guess by the title, I wasn't able to have chemo today.  Clearly, I had a sneaking suspicion that would happen but I was still gutted, still am.

I didn't see my usual oncologist, as she was on leave, so I was quite nervous and irritated, as obviously she knows my history.  The one I saw had read my notes, but still needed me to explain everything that had happened.  We then spoke about the possibilities - have it in my rubbish arm but risk it flare up again, have it in the left arm and risk lymphedema, delay it and get a PICC line in me. I don't want a PICC line and I didn't want a delay so I said, let's try the rubbish arm, and if that doesn't work, risk the left.

However, she then took another look at my arm which is all blotchy still and said she needed a second opinion.  The next oncologist (I guess!) said no, we shouldn't risk it and I need a PICC line.  Words rhyming with duck and pit flashed through my brain.  The one I am getting requires a local anaesthetic and surgery, as it's in my chest. So now I get to wait for that appointment to show up - not even sure which hospital will be contacting me - and get that in.  Hopefully it will be in the next week and I can get my chemo next Tuesday.  So keep everything crossed for me still!

I don't have much hope of it being in the next week though.  But hey ho, it means I have at least a week of feeling vaguely normal!

Chemo cycle 2: Day 15

Well, a fairly normal day today in that I have had both girls home, they have played, fought and generally been my little girls!  I can't really drive so we didn't go anywhere except to DD1's swimming lesson; I would have taken them to the park but it was miserable all day.  But that said, I managed to rest a little and am starting to feel vaguely normal, except for this arm.

However, I am starting to dread next week somewhat.  I have to have my bloods done on Monday at the local hospital and then chemo 3 is on Tuesday.  I don't see how they can take blood though, unless they can take it from somewhere else other than my arms.

(By the way, I don't think I have mentioned that I cannot use my left arm - the side my masectomy was on, and the side that the lymph glands were taken - for giving blood, blood pressure tests etc as this would run the risk of lymphedema.  This is for the rest of my life.  Yay.  Therefore, I only have my right arm for chemo.  It is my right arm that has the clot.)

So anyway, I think I may phone my oncologist tomorrow to reassure myself that things can be done as planned.  I really don't want my chemo to be delayed at all, much less by a blooming clot.

Chemo cycle 1: Day 1 - 14

I have been meaning to diarise my chemo experience since day 1, to check if any patterns in my symptoms develop over the time - I like to be organised and know what to expect!

Anyway, I have breast cancer. I started chemo on 7th July. So here's how it has gone so far:

Day 1: first chemo day, scheduled for 11.30. I freaked out in the hospital and had to be taken into a private room to calm down. But it was fine in the end. I had weird tingling in my nose whilst it was happening, but that was about it. I got very tired towards the end of the day and had to take a couple of anti-sickness pills as I felt queasy. Went to bed about 6.30pm and slept till about 7.30am.

Day 2: felt fine in the morning and wondered what the problem was! But got more and more tired as the day went on and went to bed early.

Day 3 - 5: very tired. Rested.

Day 6 - was supposed to have help with my youngest (2) today but she wasn't able to show up. So coped alone with her - she is a gorgeous and sweet girl but she is very demanding of my attention. So I think this helped to lead to....

Day 7 - 9: completely exhausted. Put DD2 into nursery both days and did very little as obviously now I was into the period where my immune system is very low. Had another little freak out on day 8 as I was so, so tired and so was DH.

Day 10: I could feel I was less tired and 'coming out' of whatever I was in. I know I wasn't supposed to, but I went to DD1's school celebration evening and open evening with her teacher. This felt good! I was super pleased to be out of the house.

Day 11: had a chilled morning. DH took the girls out so I had more time to myself. Then took the girls to a birthday party - again, it felt so good to be out doing normal things. I made sure no-one coughed on me!!

Day 12: DD1's birthday party. Had fantastic help from DH and my dear friends and one of the parents who stayed. But it felt good to do stuff. Still tired, but definitely better.

Day 13: chilled out day alone, felt fine. Went to Tesco!!

Day 14: today. DD2 has been home, it's been fine. However, my head hurts a lot and I suspect it means my hair is about to fall out - I just kind of itched it and a small clump came out. One of the people on here has advised me to contact my breast care nurse to ask about it, so I may do that in the morning. I also intend to visit Cancerwise this week - a charity in the nearby city who offer complementary therapies.

Introduction

About me

I am a 35 mother of two young girls whom I breast fed. I have no family history of cancer. I eat well, don't smoke and I exercise. I live as healthily as I can. I still managed to get breast cancer.

Background

I was diagnosed with breast cancer in April 2010. At that point, it was what is called DCIS (Ductal Carcinoma In Situ) which is a non-invasive type of breast cancer. It is not life threatening if it doesn't spread outside of the milk ducts, so it's probably a good type of cancer to get. However, it was everywhere in the breast meaning that I had to have a masectomy. The consultant also told me that they would have to remove a few of my lymph glands and test for invasive cancer. If they found any, I would have to go on for further treatment, including chemo.

I had the masectomy in May 2010. About a week later, I was told that the cancer had spread from the milk glands and was considered invasive. Therefore, I needed further treatment.

A consultation with the oncologist revealed that, at the least, I would need 6 rounds of chemo 3 weeks apart and hormone treatment for the next 5 years. I possibly need radiotherapy, but I find that out in September.

So I started chemo in July and have kept a diary since. I am going to transpose it on to here as it will help me keep track of how it's going and maybe, just maybe, it can help others.