Here we go again....

Chemo update

Bognor last weekend (see PPS at end of blog)

Tim and I have been to see Dr A today.

Thankfully, despite looking hideous, my fingers are much better (I'd say about 80%)... Well I can open a tin of beans*/beer* (*delete as appropriate).

The 'altered sensation' (a cross between numbness and pins and needles) at the end of my fingers is loads better, and apart from my left thumb, it doesn't really feel like my other nails have been trapped in a door.

To be fair, they look a lot worse in 'real life' - really black and horrible

Dr A felt my left thumb to check for any infection, as your nailbeds can get infected quite easily, and he said if there was any pus or oozing to let him/the team know and they would get me on some antibiotics! Nice.

He said that he was happy to put me back on the chemo but was going to give me a reduced dose so that the pins and needles don't come back as badly. He also said to keep the chemo nurses up to date each week so they can monitor the situation and if I have any concerns to get in touch with him (which was really nice).

He asked again how many treatments I'd had and when I'd had a break.  I reminded him that it was 12 and that I hadn't had a break prior to my finger issues.  He looked at the previous dose that Dr P had put me on and did say that he had found that Dr P had 'stretched' people in terms of dosage.  So I think he was saying that maybe I should have had a break before the damage had started.  Oh well.

Then Tim asked, all being well, how many more sessions I was likely to have. Dr A said it was likely to be 'about' another six (so the original 18 discussed).  He said some people only ever have two or three treatments as the side effects are terrible for them straight away and can't be tolerated, but then he knows of another patient of Dr P's who has been on it weekly for THREE YEARS as she doesn't get any side effects from it at all.  Wowzers.  But he said 18 is about average, and there is a possibility of stretching it to 21 or 22 but it's all about the 'quality of life' as I mentioned in my last blog.

There was then the discussion about bloods.  I said I'd had them done yesterday by the district nurse and he checked them and then 'oh'.  'Oh', is not a word I like in this context!! He said my (pesky) ALT levels had risen again.  Bloody ALTs - they have been the issue all along.  This is really worrying me if I'm being honest as I'm concerned that they are the ones that will just keep rising and rising no matter what treatment I'm on.  But he did say, 'well we've just had another CT scan and that was ok' so he is happy for me to carry on with the treatment and we'll keep monitoring the liver levels as normal every week.

So the fun continues tomorrow with chemo no. 13. I have to admit that it's been really nice to have a few weeks off as I've generally felt much better, but on the other hand, bizarrely enough, I want more chemo to try and get these tumours shrunk as much as possible!!

Thanks for sticking by me folks.

This is proving to be pretty tough all round!

Love from me. xx

ps. Thanks to Marilyn for coming over to say 'hi' to me at the front of the hospital today while I was waiting for Tim.  It is so nice when people recognise me from my blog and I just hope that it is insightful/useful etc etc for you all. xx

pps. Tim and I did get away for a few days this last weekend - we stayed at my wonderful friend Anne's house in Aldwick near Bognor.  We had a lovely time, just to two of us, eating lots of chips, walking on the beach every day and just taking time to be away from the hum drum of all this shit.

Calm

Us

Yep I whipped his ass with three holes in one - boom! (That's not as rude as some people might think it sounds!!)

Hot fuzz

What a nerve

Thought I'd give you guys a bit of an update on what's happening in case you don't follow Breast Unit Events on Facebook or Twitter.

Last week's chemo was cancelled not long after I arrived at Rowan Suite with Susie (in matching t-shirts and Minnie Mouse ears that she'd bought. Oh, what's occurring?? ...totally ace). 

Oh!

Ready to go?

Er, no #chemoiscancelled

As normal I was asked by the chemo nurse about my side effects in the past week and I mentioned my fingers.  For the last few weeks they have been hurting (like I've had my fingers trapped in a door) and also a cross between pins and needles and numbness.  My nail beds have risen and my nails are turning a black colour. NICE.

I mentioned it last week but they didn't really pay much attention to it. Anyway, this week's nurse wanted to run it by the oncologist who was at the suite that day, just to check it.  She called him and popped back over. She said they had suggested that chemo is cancelled for the week because there is the possibility of permanent nerve damage.  I was warned that I could get neuropathy (nerve problems) but I hadn't been told that it could be permanent!!  Bizarrely it was due to be chemo 13 as well, unlucky for me!  The nurse also booked me an appointment with my oncologist, Dr A, to discuss it in more detail.

At first I was disappointed I couldn't go ahead with the treatment, but then I thought, 'well I certainly don't want to have permanent damage'. Tim and I are also coming to realise that planning anything going forward is going to be very difficult as I just don't know how I'm going to be and what treatment is or isn't going to be happening.

In all fairness, it was almost 'good timing' that I had that week off chemo as the weekend was full on (see 'Into the Wilderness' below) and then this week we've had Scarlett down for a few days, the beer festival and the Worcester Show so I've needed as much energy as possible!!

Out for dinner with Scarlett

and Juney and Gords (and Tim who is out of shot)

Walking the dawg

Awwww

One of the only pics of the beer festival, late on, in the music tent!!

Watching my choir, Got2Sing at the Worcester Show (I even nipped into the back row to sing a couple of songs)

Rainy Worcester Show

Tim and I went to see Dr A last Monday and we discussed my fingers. 

He said 'with 'palliative' chemotherapy it is about quality of life, and if it is impacting on your quality of life then we may either reduce the dose or stop the chemo altogether'!!  I was a bit shocked at this, and wasn't expecting it.  Firstly, when he used the word 'palliative'....it was awful.  I mean, I'm not stupid, I know the treatment I'm having is no longer trying to keep cancer from coming back but is a means of keeping me alive as long as possible, but when people use such words, it really hits home.

Secondly I was surprised that I may not finish the course of chemo.  I've had these 18 sessions stuck in my head and have been facing them with gusto and wanting to plough through them and get them done and under my belt, but, understandably if the chemo is going to mean permanent damage, then I really do need to balance the risks and benefits of the treatment.  Jeez. 

I think because I completed my previous chemotherapy ten years ago (despite it being total pants), I feel I will be letting myself down if I don't finish this course, especially as know it has started to shrink the tumours somewhat.

So I'm feeling a bit shit about all that. 

We agreed that I would have another two weeks off and will see him after that to see if my fingers (and toes, which are numb) have improved.  I did ask Sue (my bc nurse) later on whether other people haven't finished their full course of paclitaxel, and she said 'yes, quite a few'.  Also I've had no break at all whereas many women have three weeks on and one week off, so I should probably cut myself some slack and realise I've done really well to get 12 done in a row.

Giving cancer the chemo finger!

While we were at the appointment there were a couple of other things I asked him about as well. 

I wondered if I needed mammograms anymore.  He said no as I'm having regular CT scans and they would pick up any new potential breast tumours, which, bizarrely means that I will no longer have a reason to the Breast Unit that I have raised so much money for.  Although saying that I am hoping to make use of the complementary therapies on offer which are funded by the money Susie and I now raise (along with everyone else who raises funds for the Unit).

Also the chemo nurses have told me that my ALT levels (which are a liver enzyme) have been rising again.  This is worrying me.  I mention it.  Dr A says 'let me worry about that' and no more was said, so who knows what that means...probably that we'll do something about it when it's getting 'too high'...all I know is that it's rising.  This cancer shizzle messes with your head I can tell you!!!

I've now got an appointment to see Dr A again in w/c 20 August.  That was my original 'week off' chemo that we'd previously talked about and when Tim and I were planning to go away.  It's a good job we didn't book anything that we couldn't cancel.  The good news is, we had booked something, where we could change the dates. We are staying at a friend's house down by coast so we'll be able to go away for a few days after all. Yay.

Into the Wilderness

When I say last weekend was full on, I mean it was festival time. 

Tim and I had seen that Chic were playing at Wilderness Festival in Charlbury, Oxford.  We love Chic and Nile Rodgers.  We saw them for the first time at the Moseley Soul, Funk and Jazz festival about four years ago and were really keen to see them again.

I contacted Wilderness Festival to see if they offered day tickets as I knew I wouldn't be able to manage a whole weekend.

They said they didn't but as a special exception to me they would grant me a day ticket so that I didn't miss out and Timmy could come for free as my carer.  Yay.

We took a LOT of hand gel, wipes, tissues etc.  Need to be careful with infection while on chemo, especially with festival toilets!! hehehehe.  (Although, saying that, all the toilets were really clean!)

Anyway, what a totally fab day.  The sun was scorching and I was covered in Factor 50. 

Beer

Taking in some shade

This guy was brilliant

The one and only

Some rock and roll

Stag

We had trouble finding the Accessibility car park etc at first as no one seemed to know where it was...but eventually we were sorted, got our wrist bands and headed into the festival.

Crikey, it was probably the most middle class festival I've been to, but that made it even nicer.  There were no groups of 16 years olds getting off their tits on drugs and booze and walking around vomming everywhere (which I've seen at festivals before...nice).  It just had a really nice atmosphere and the emphasis wasn't just on the music but everything else they had to offer, which was loads.  Including some wonderful food - I mean, even Ottelenghi had his own tent.  And Benedict Cumberbatch and Olivia Colman were there in the 'Books' tent. (I didn't seem them BTW as they were there on Friday and we were there on the Saturday, but we did walk straight past Jo Whiley).

Just before Chic

We saw some great music, including a guy called Matt Woods, who had an amazing falsetto.  But apart from Chic, the highlight had to be me performing in front of 1000s at the hip hop karaoke.  Most people who follow Breast Unit Events will already know this!!

When Tim and I lived in London over ten years ago, we went to the hip hop karaoke night a couple of times, but were never brave enough to have a go ourselves.  Then, about four years ago, I was on a night out with Tim and our friend Nick in Birmingham and we saw a flyer in a pub saying that hip hop karaoke was on tour for one night at the Custard Factory.  We headed over there.  It was pretty quiet, only about 30 people, so I thought it was my chance and put my name down to have a go.  I did, and really enjoyed it (you can see that performance here). 

So when I saw the h-h karaoke was going to be at Wilderness, I thought I might have some of that.  They were on between 6.45-8pm, so when Tim and I finished watching one band, we headed over to the Atrium stage and there was a small queue at one end of people signing up, so I headed straight over there and I didn't have time to chicken out.

Some of the people who got on stage were absolutely phenomenal, no lyrics and rapping like maniacs, then it was my turn.....  I'd had such a dry mouth beforehand, but I thought 'who cares..... And it was amazing.  The smiles on peoples faces and looking out to an immense crowd in the heat of the early evening during a British summer heatwave is something I will never forget.  Sooooooo much fun. So glad I did it and so glad that Tim filmed it.  You can watch in on YouTube by clicking on here. Enjoy!!  I did!!  I should also mention that I was sober.  I'd only had one pint.  That girl's got guts I can tell you!!

Getting ready for hip hop karaoke

Done it...coming off stage

Some other hip hop performers...too cute.

Fuzz away

This week I have also asked my hairdresser, Claire, to shave my head again.  It had started growing and some of it was quite long but it was very patchy and most of it was grey/silver and it really made me look like a cancer patient, so I decided to go smooth again and I feel much more confident with it now.


Right, I've rambled on enough so that's it for now folks.

Hope you're well well.

Much love. xx