Monday, 30 August 2010

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!

Sunday, 29 August 2010

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.

Friday, 27 August 2010

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! 

Wednesday, 25 August 2010

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 28

Not a lot to report, just pottered!

Sunday, 22 August 2010

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.

Wednesday, 18 August 2010

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!

Tuesday, 17 August 2010

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!

Monday, 16 August 2010

Chemo cycle 2: Day 17 - 21

Not much to blog about really.  The last few days have been okay although I have been dead tired.  But that may be more to do with loads going on, including DD2's birthday party and various visitors than the chemo.  I have also noticed a few additional side effects I need to ask about tomorrow.  These include:

  • Dry and itchy but weepy eyes;
  • Hot flushes.
 Hm that's all I can think of this late at night.

Today I had my blood tests, which I was quite worried about.  But she used a small needle with some tubing attached and the only thing that hurt was her twisting my arm and hitting it trying to find a suitable vein.  The taking of the blood didn't hurt at all, thank goodness.  And I had to laugh.  The waiting room was packed.  And yet, as soon as I sat down, my name was called.  There are some bonuses to this after all, I guess!  I didn't receive many bitchy looks this time as well, so the headscarf definitely does the trick.

Wish me luck for chemo 3 tomorrow.  If I get through it - and I'm not convinced the oncologist will say I can due to the extreme tiredness and the rubbish arm - I will be halfway through.

Wednesday, 11 August 2010

Chemo cycle 2: Day 16

Had my Zoladex injection today.  This is supposed to protect my ovaries during chemo but may not so there you go.  Checked with the nurse about my arm and she seemed to think it was healing, so that was good.

Not much else to report, apart from I saw the A-Team (the film, they weren't around town) and enjoyed it immensely.  Lots of silly fun to take my mind off everything!

Tuesday, 10 August 2010

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.

Monday, 9 August 2010

Chemo cycle 2: Day 14

So this is today, the day I decide to publish on Blogger!  Arm still sore but feeling ok so far today, and I have had both girls home.....

Chemo cycle 2: Days 10 - 13

Well, apart from the soreness in my arm, we have had a lovely few days.  We went to the New Forest for a short break and I got to relax, go for walks and eat well!  I was due to have a massage but the beautician said that with a blood clot it's not a good idea, and it's not always good if you are undergoing chemo as well.  Something to do with it gets the blood circulation flowing, which isn't great.  Oh well.  I had reflexology instead which was nice but not the same.

It was also the first time I have been totally out in public with headscarves - have been into town for an hour or so before this, but this was pretty much in public for 3 days straight.  I caught people kind of looking but didn't get any gawping stares!!  But a majority of people took absolutely no notice which is nice to see.

Chemo cycle 2: Day 8 & 9

So I am on Heparin and I get to inject myself every day for the next however long.  Days 8 and 9 I have really been recovering from hospital, haven't really been with it, but I don't think that's the chemo.  I am also very annoyed that I have a blood clot added to my list of what's wrong with me.  Grrrr.  But days 8 and 9 have been fine, the girls have been at nursery and holiday club so I have really had a good chance to relax and recuperate.

Chemo cycle 2: Day 4-7

The moral of my story is - if you have issues after chemo, phone the hospital where you get chemo straight away and if they want you to be seen, go to them rather than the local A&E.  Soooo....

Day 4:  I woke up pretty positive, the blotches on my arm had gone down and it seemed ok.  No temperature or anything.  But as the morning wore on, I felt pretty awful, tired and blergh.  DH took the girls out to give me some time to rest.  But at about 4pm I just felt wrong, my arm had gone up again and I felt even worse despite relaxing most of the afternoon.  I took my temperature and it was 38.8, waited a while and then it was 38.3.  So I phoned the hospital who said come in, we've got a bed.  Argh!!  DH was still out and when I phoned it would take him about 45mins to get home.  So I faffed around getting a bag packed, getting more and more panicky and ended up phoning a close friend, asking if I could just talk to her to calm down.  And bless her, she said she was coming over (bearing in mind she has her own family to worry about) and when she was here said she was taking me in.  DH met us at the hospital with the girls, and then she took them back to hers.

DH and I went in and I got my bed, then we waited for about 4 hours to be seen.  They put a cannula in my arm which hurt like anything so I could get IV antibiotics; they also took blood.  Eventually the doctor confirmed that I would be staying overnight and DH left about 9.30.  Still didn't know what was wrong, but it was a suspected infection and/or chemo leak I think.

Day 5:  I love the way they let you rest and sleep in in hospital (haha).  So after a terrible night's sleep and a cup of tea at some stupid hour of the morning, I got to see my oncologist.  She came in right when they were draining my cannula and I was in massive tears of pain, took one look at me and told them to take it out.  She inspected my arm which was now totally swollen as well as blotchy, asked questions about my pain and added blood clot to the list of possibles and put me on Hepacitrin injections immediately.  She asked for me to be booked in for a scan the following day (Day 5 being Sunday).

I was then moved into a private room.  Hurrah!!  Not sure why, but I suspect it's because I didn't need to be observed particularly and I am still mobile etc.  It was also better as then DH could bring the girls to visit without really disturbing anyone.  But it was also pretty boring, I got through 2 books.

Day 6:  So today was my scan day.  No-one knew what time it would be, I was told that the porters just come and get you whenever.  So more books and boredom, although DH came mid morning and brought snacks which was good.  I also managed to have a nap, finally!  The porter came about 3.15 and put me in a chair and I felt such a fraud going down to outpatients in my pajamas, slippers and wheelchair thingy.  I can walk!  But I felt awful and I think I was in tears in the waiting room.  All I could think was, I shouldn't be here, this shouldn't be happening to me, now, it's not fair.  It would have been so much better if I could have been given a time, I could have got dressed, gone down myself and preferably asked DH to be with me.  Never mind.
So after about 30 mins wait I was seen.  And yes, I have a blood clot in the arm where the chemo goes in, the upper bit.  It could have been the chemo, but from what I can see loads of things can cause blood clots.  I'm being referred to a blood department to investigate why.  And I get to inject myself every day for at least the next 3 months, the joy.  I hate needles, but I've done it now.

By the time I got back to my room, it was kind of too late to get all the drugs sorted and go home so I got to stay another night.

Day 7:  Got woken up at the crack of dawn again!  But I had slept better so that was good.  The doctor came in pretty early to confirm about the blood clot, what drugs I would need etc and then said once I got the drugs I could go home.  Yay!!  Phoned DH to come and get me then went to get a towel for a shower, when the nurse said to me 'don't think the drugs will come quickly'!  But I didn't care.  And DH got there, I was ready to go, I was taking a bed when I didn't need to but there were no drugs.  So I checked out haha!  They said we could come back for the drugs.  DH and I went for a fabulous lunch and then I went home to the sofa.  I was exhausted yesterday, but so happy to be home.

My arm is still swollen and sore, but I can see my knuckles for the first time in a few days, so I presume that means the Hepactrin is working.  But I have learnt my lesson.  Phone at the first sign of wrongness and go to the hospital where they know about chemo.  I don't think I would have avoided the blood clot, but it could have all been done before the weekend if I had, I suspect.

Chemo cycle 2: Day 2-3

The main symptom has been tiredness really, I seem to be okay in the few days following the treatment but...

Yesterday (Day 3) I noticed that the soreness from the chemo on my arm was still there and that my arm was covered in pinky blotches, a bit like a rash.  DH had noticed them an hour or so after the chemo on Day 1, but I hadn't really given it much thought thinking it would go away.  But I thought 48h was enough, so phoned the helpline who told me to go to A&E.  Oh the joy.  Luckily DH is working at home this week so could take me and thank goodness a friend was able to collect DD2 from nursery and her husband was at home to take DD1.  So it all worked out.

The A&E doctor didn't fill me with much confidence though.  He asked what chemo I was having, I said FEC and he started to write 'effycee' or something!  He said he had never heard of it.  But he diagnosed an infection in my vein and I am on antibiotics for the next 5 days.  It's already going down so hopefully he was right....

Chemo cycle 2: Day 1

And so now I have just had my second round of FEC.  This one was quite horrible compared to the first.  I had what the nurse called a 'grumpy vein' and so the needle thing (I can never remember what it's called, I want to say cathater but I know that's *definitely* not right!) hurt loads going in and when they did the red drug my arm/vein felt really sore so he had to slow it right down.  I was in there for nearly 3 hours I think.  The only symptoms I got apart from that were the tingly nose when a different drug went in, but it was fine, it passed.  But all's well now.  I am super tired but to be honest, I was before I went in, so not sure if that's the children or the chemo!  Or both?  Either way, it's certainly an early night tonight.

Chemo cycle 1: Day 20

So this was the last day before my next chemo.  I had a shower and goodness the amount of hair that came out was awful/amazing (delete as applicable, I'm not sure).  I imagine about half of my hair came out.  I was given a handy tip about hair in plug holes - squirt a bit of Veet (or similar) down there and wait for it to dissolve - well, it didn't work with the amount of hair that I lost....  oh well.  DH came home and just stared at my head and asked if I had cut it again, that much came out. 

As my hair is usually massive it's still there with no visible patches, but looks thin.  I think next time I wash it, that may be it and I will shave it after.
Spent the day getting organised as it's DD2's 3rd birthday party in 3 weeks so I ordered a bunch of stuff online as it's easier; that way it's done if I flop after the next round.

Also got my blood done at the local hospital.  I was in and out in 15 mins - how's that for service?!!

Chemo cycle 1: Day 16 - 19

In terms of how I have felt, I have felt fine - no tiredness (or no more than usual anyway!) or sickness or anything.  The big thing has been the hair loss.  Every day it's been getting more and more.  I won't have any left soon - I am going to wait till my Day 20 (today) diary to explain it a bit more, as it's still the morning and I have a lot to do, but I think in terms of how much hair I have, I reckon it's halved.  Maybe more.

But anyway:

Day 16: Pottering and cake baking, lovely!

Day 17: Went to House of Fraser in the morning to get an eyebrow pencil just in case.  I have never used one.  So I went to the Benefit counter and she was absolutely amazing!  Really sympathetic, without being patronising and lovely.  She showed me how to do the pencil with my eyebrows and then took me through how to do them if my eyebrows go, explained it really well and simply so that me, Mrs I-haven't-a-clue-how-to-do-makeup, could understand - but again, no patronising.  She also said I was welcome anytime to come for a free makeover as a pick-me-up and invited me to a fragrance launch they are doing at the end of the month.  So I cannot rate her highly enough and it made me feel great.

I then came home to finish DD1's birthday cake and we had a little party for her when she came home from school.  Fantastic day.

Day 18:  Today was our annual summer bbq.  It was very chilled and we had just the right amount of people show up so it felt interesting but intimate enough.  Got lots of help with filling up glasses etc so I didn't wear myself out too much.  Again, it was lovely and so many fantastic people could make it.

Day 19: flop day!

Chemo cycle 1: Day 15

Fine today - spent a while out shopping which was great, but I am quite tired out now.  Hair is definitely coming out - not yet falling out completely but coming out in clumps when I itch my head.

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.


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.


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.