Reduced Dose of New Chemo

Well my lovely Bloglets,

Three weeks into my new drugs or three weeks after starting my new drugs, that’s probably better English.  Anyways.  Three weeks.

I started on 100mg a day which is a fifth of the standard dose as I’m what they call a ‘sensitive responder’, which is good as it means the drugs work, but also means they tend to take it out of me a bit.  As you all know if you are a regular read of this.  100mg seemed to be fine so after a week I upped it to 200mg as told to by my consultant.  At some point, I can’t remember when, I started to get prickly and itchy skin.  Not good. When that happens I tend to freak out a bit as that was the first sign that I was severely intolerant to the first drugs I was on.  And ignored.  Then I started to feel sick.  I’m lucky, I have a pretty solid stomach and rarely feel sick, unless I have eaten too much but that’s a slightly different feeling.  This was properly feeling sick.  Which wasn’t great.  It also seemed to be, I discovered, that when I felt sick it was also because I was hungry.  In the beginning I didn’t want to eat as that’s the normal thing when you feel like that.  I can’t remember why I decided to eat when I felt like that one day, but I did and the nausea went.  Weird.  Yesterday I was given a booklet on my new drugs.  Side effect number one.  Nausea.  Side effect number two.  Itchy skin.  And it all made sense.

I don’t know if I’m still as tired – it’s hard to gauge at the moment whilst I’m between flats as my life is much quieter than it normally is as I tend to chill out at the parents more than when I’m in London.  I’m still getting the shooting pains in my head which are a fatigue signal, yet in the evening I don’t feel tired until much later and seem to be waking up after 9/9.5 hours which is about an hour earlier than I was a couple of weeks ago.  I’m not sure if my body signals are just a bit confused at the moment as the hungry signals seemed to go and nausea was the new feeling for eat something.  I am also drinking caffeine later in the evening than I used to, which may be because I’m tired but am not recognising it.

Anyways, back to 100mg and a check-up in 4 weeks.  I was meant to be back in 3 but I have my pre-procedure assessment.  Oh and on the I MIGHT HAVE CERVICAK CANCER FREAK OUT!!!!!!  My letter finally arrived from the clinic about 2 weeks late, well done Royal Mail *slow clap* and it clearly says in the letter don’t worry about cancer.  So.  Relax and breathe.  I feel like a bit of an idiot about my reaction now to be honest.

I think that’s it really.  I also finally met my clinical nurse specialist who is wonderful. Got a lot of love for her and my consultant.  My consultant also swore in my consultation which made me laugh and then of course I removed my filter and my standard language resumed.

I looked at a flat last night, waiting to hear, fingers and toes crossed.  I need to be back in London.  Been feeling a bit displaced and low because of it. 

With love and hope,

XXX

Another Phone Call and Some Worry

I did that thing I know I shouldn’t do and advise people not to do it.  I Googled.  Google can be amazing and helpful and useful and well, it’s how I prove I’m right most of the time.  However it can also be a dark and scary place.

A voicemail.  The hospital.  Unexpected.  No letter in the post.  No warning.  And I’m sure I’m blowing this all out of proportion.  I really hope I am.

I am good.  I look after myself other than a bit of cheeky sugar and some trans-fats.  Yes, my diet could be better, but overall it’s pretty good.  I don’t drink or smoke anymore and haven’t in years.  I stopped smoking 9 years ago and drinking 6 and a half years ago.  Where has the time gone?!

Due to going to University (the first time) in Scotland I started having smear tests younger than I would have done in England.  I was 20.  I got the letter and I went.  Yes there is information out there than 20 is too young and not needed but I look after me, so I went.  And did every time a new letter arrived, which wasn’t very often. I can’t remember.  3 years later or maybe even 5?  Anyway, whenever it did, I booked an appointment and went.

Yes it’s a bit embarrassing a bit uncomfortable but it’s over quickly, and better to be a bit embarrassed and uncomfortable with someone who does that job all day every day for about 5 minutes than not.  After having eggs frozen and having my ovary follicle size measured very regularly for about 3 weeks, I quickly got over the embarrassment stage.  And then at some point, I can’t remember when, maybe 5 years ago, my smear test results became abnormal – very common, nothing to worry about, come every 6 months.  So I did.  And they became more normal again and I think I went a year between appointments.  Ish.  I can’t really remember because I get the letter, I make the appointment, I get the results – abnormal come again in 6 months, or, it’s fine, come again in a year (ish I think) because they were abnormal previously, make the appointment and go.

Then the results became abnormal again and I was back to tests every 6 months.  And then I was referred for a colposcopy, a little biopsy of the cervix, luckily I seem to be superhuman when it comes to pain and it didn’t hurt me.  I can’t remember when I had the first biopsy done.  6 months ago, a year?  Anyways.  A letter arrived about 5 weeks ago for another one to check what the cells are doing.  So I went and had it about 3 weeks ago.  The woman who did it said it looked better than last time, but they took two biopsies from different places.  I didn’t think about it again until yesterday in fact when I thought I should have had a letter around now telling me the results.

A voicemail, I need to make an appointment.  I phoned.  I need to have a cone biopsy. 

Why?

I’ll have a look at your notes – it doesn’t say and I’m not a member of the medical team so I can’t tell you. 

Can you find out so I know before booking my appointment? 

Yes.  I or the colposcopy team will ring on Monday.

I then Googled. 

Fucking idiot.  A cone biopsy is carried out to look for/make sure it isn’t cervical cancer.  I am in that place I have never been.  I have never had the worry of a potential (lets really fucking well hope it isn’t) cancer diagnosis.  Diagnosed in a day has so many benefits, I had no idea what was going on!  Not this time.  It’s just an exploratory test.  The words cervical cancer in the test explanation don’t make it an easy one to wait for.  I’m sure I’m fine. My body was telling me for 6 months that something wasn’t right before my leukaemia diagnosis.  I’m tired, as always, but feel fine.  I’m sure I’m fine.

I look after me.  I will go. I will wait for the results and I will pray to god they are fine.

With love and so much hope,

XXX