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

Is the chemo working?

Scan results

So last Wednesday I went for my first CT scan since starting Paclitaxel chemotherapy....

Me about to have my CT scan...Kind of like a Krispy Kreme but less tasty!!

My latest vlog tells you the results. Link is below (YouTube).

https://youtu.be/NoynQXrVGCY

Oh, and on a cheerier note, here is a link to a make up video which I did before my CT scan and turned into a bit of disaster - but it made me laugh!!

https://youtu.be/1jHvs40rZvg

Until next time. xx

Can you meet me halfway?

Mambo number 9

I know, I know, it should be mambo No 5, but I thought it worked OK with No. 9 too... I bet you're singing it in your head now, just like me!!

Half time

Thought I'd check in with you all because I've now passed chemo number 9.  The half way point (in fact, it's no. 11 this week). Crikey....who'd have thought it.  In some ways it has come around quite quickly, but in other ways, not so much.

Number 10 with my amazing school friend Liz who came all the way from Cardiff to take me to chemo. Love her so much. xx

I can't tell you how 'bored' I am.... hear me out on this one.  Now, you might think being at home all the time would be a great time to catch up on Nexflix, trashy TV, books, films, ebay, learning how to edit YouTube videos, but I find it so, so difficult to get motivated to do anything.  It's really odd, and not like me at all.

Fridays and Saturdays are generally 'good days' as I have more energy and feel fine (I'm so lucky I've had no nausea or vomiting with this chemo regime) and also Timmy is at home which always makes me feel loads better, but then Sundays I start to dip and Mon and Tues, and sometimes Weds, I start feeling 'meh'.  My achy legs usually start then too and tiredness (although how anyone has been sleeping in all this heat is beyond me!!). And it's on these days when I just can't shift this 'feeling'.  Having visitors wouldn't necessarily help either as that is really tiring.  Thankfully Tim comes home at lunchtimes when he can so I get to spend time with him while we have a quick sarnie.  Maybe I've got an element of depression.  The days seem long and I just can't wait until dinner time - food is the only thing that feel I've got to look forward to.

I want to go on holiday, I want to plan, I don't want to worry about infections, I want to know that my cancer will stabalise for a long time, but none of these things can happen at the moment.  I'm in such limbo, and I know that Tim feels the same way too.  The summer seems never ending, and I normally love this time of year.

Bizarrely enough, I actually enjoy my Thursdays when I go for chemo.  I have an excuse to put on some decent clothes, make up and meet other people.  The past couple of weeks I've also been there at a time when I can have a foot massage and lunch (which is provided) too.  There is always a reaction to the headwear that I sport on chemo day too and I think if I can show you can be bald and proud then other people might not fear it quite so much, or it might raise a smile.  Having the treatment is also relatively calming (well, when it all goes according to plan that is), which probably has something to do with the amount of antihistamine they give me before the drugs to help reduce any potential allergies....

Skin and hair changes

The good news is that my PICC line has been behaving over the past few weeks, which is fab, and the district nurse has been able to get blood out of it and flush it etc and it's also been fine when having the treatment too.  The only issue is the reaction I'm having to the dressings that are put on it (which I mentioned in my last blog).  I've tired various sorts of dressings now and they all seem to peel my skin away when they are taken off.  In fact, this week was particularly bad.  Even though the nurse is super careful at removing the dressings, it still took a large flap of skin away and it started bleeding and is now all crusty and horrible.  I ended up having to go up to hospital and swab was taken of it as it had all gone a bit yellow and vile. Nice!!

Sore

Ow!

(As an aside, I'd just like to say that I really look forward to seeing my district nurse on a Tuesday morning. I normally have a lady called Louise with whom I've built a real rapport and we talk about all sorts while she is with me, usually for about 45 mins or so).

My skin in general has taken a turn for the worst.  Since puberty I have been plagued with an oily t-zone, I mean, when I was in my first year of Uni I had such bad acne that I looked like an inflamed Elvis as I had angry spots in large strips down the side of my face just like sideburns.  But this chemo has changed all of that.  I hardly have any oil on my face, and, in fact, I even now have some crusty, dry patches around my mouth!! Shocker.

What this means is that I'm now having to change my entire skin care regime.  Anyone who knows me knows that I like to spend my money on such things so I have an arsenal of lovely natural skin care which is mattifying, but now I'm having to branch out and buy totally new stuff.  I've just ordered some Neals Yard Rose Balm which is supposed to be a miracle worker - I'll let you know how I get on with it when it arrives. If anyone has got any suggestions for really dry skin patches, please let me know.  I've even been using some Cetraban which is basically like vaseline for your face!! Yowzers.

My head is still spotty. I'm not losing any more hair (not that I've got much), in fact, it has actually started growing back a bit (how odd), but it is super patchy and a couple of times I've totally forgotten I've got no hair and have gone to run my hands through it.  In fact, I was missing it so much that I asked to run my hands through Timmy's hair - and he hasn't got much either!! hehehehe. 

Have I told you I've started a new Instagram account called @chemo_head - give it a follow if you're on Insta, or feel free to send me a picture of you wearing something stupid on your head in support of those going through chemo (via Breast Unit Events on Facebook messenger) and I can upload it.  Thanks.

In fact, Instagram has been great - there is a big cancer family on Insta and I'm in regular contact with a number of other women in my position.  One of them even sent me some gifts (which was so lovely), including a lipstick....she knows me well already!! I've actually had random flowers, gifts, letters and postcards from friends over the past few weeks which are always so lovely to receive and real pick me up.

In terms of other chemo side effects I'm still getting the achy legs, chemo mouth (I haven't had a cup of tea for weeks because it tastes so awful), weight gain (every week), woozyness, tiredness, but have now also developed the following:

• A generally bloody nose
• A twitchy eye
• Really painful fingernails (it feels like my thumb and forefinger nails are going to fall off)

My chemo drugs

Dr P

I have now said my goodbyes to Dr P, my fab oncologist, and he is now living in Bermuda.  My last appointment with him was emotional.  Tim was with me and Sue, my nurse, was there too.  It all got a bit much when I gave him the card I'd written and tears were welling in my eyes and I had to take some deep breaths.  I am really, really going to miss him.  He will be replaced by a locum, Dr Abbas, who I will meet next week for the first time.

Dr P has been such a constant throughout my secondary diagnosis and treatment and I've always felt able to talk to him openly and ask whatever questions I had.  He was an advocate of trials and wanting to make progress in the breast cancer arena.  I can only thank him for looking after me for the last 18 months and wish him well in his future endeavours...as he knows more than most, you only live once, right?

My thank you card for Dr P

The last appointment included the question from Tim, 'what happens at the end of the 18 sessions of chemo?', the answer to which I have mixed feelings about.  He basically said if it's working then they may keep me on chemo!! Oh jesus.  I actually know a woman who has had 34 cycles of it...  On the one hand, it would obvs be totally fab if it's working of course, but on the other hand, I can't really 'do' anything while on chemo (apart from in those two days a week when I don't feel too bad). We can't go on hols, I can't eat blue cheese, I can't sunbathe, I can't plan, so being on chemo for longer will be a bit shit.

My scan will be due soon too and I'm absolutely crapping myself....what if it's not working, or not working enough.  When I had chemo before it was an insurance policy to blast any potential escaped cancer cells (well, that didn't work did it!!), but now it is to try and keep me alive and it's a totally different prospect.  It's strange to think of it in those terms, but that's how it is.

Worcester News

I'm now just over a month into my Worcester News column - I don't know how well it's being received (I suppose I should ask them) but it has been quite tough reliving the blog and the memories of my re-diagnosis.  As I only have 250-300 words of space each week there isn't much that I can cover so although I've written four columns, they are still from the first two blogs...I hadn't realised how much blogging I did back in Jan 2017, but the idea was (and still is) to keep people up to date with what's going on and also to raise awareness.

Cabin fever

So I've been starting at the same four walls for 11 weeks now and I'm sick of looking at our awful curtains in the our lounge and dining room, so I'm on the hunt for some new material for curtains...  But apart from that, I do try to get out when I can, especially at weekends. 

We actually got 'away' a couple of weeks ago to Witney, Oxfordshire with Susie, Chris and Lucas, which was really lovely and we had a BBQ and good old chill out at a friend's static van - I even had some gin - hoorah.  We paddled in the little stream and the Colemans went swimming in the lake there - it was lovely. 

This last weekend Tim and I met up with our friends Kevin and Matthew for our annual pilgrimage to the Commandary in Worcester where the local Rep company put on a 'show' each year.  This year it was the Hound of the Baskervilles which was really funny.  It's such a glorious setting and we take a Prosecco picnic - it's lovely.

I made chocolate covered strawberries for the first time for our picnic too - yum o rama

We also visited the stunning confetti fields in Wick, near Pershore - it was sooo hot, but they were truly beautiful.

Tim and I have been out for dinner a couple of times on a Saturday night, which has made us feel like 'us' again, rather than patient and carer, we had such a lovely time.

My ace friend Sue and I also went to see Lionel Richie back in June.... totally brilliant.  I was building myself up to it all week as it was a Weds eve, and I don't usually do evenings as I get so tired, but I took it really easy on Mon, Tues and Weds and rested lots so that I could make sure that I could go.  What a totally brilliant night - even though it rained, we were ready with ponchos and umbrellas and sang and danced all night (well apart from the slow songs, when I took the opportunity to sit down to save my energy).  It was so much fun and he was a great performer.  It reminded me of my 40th birthday party when the song that got everyone singing and dancing was All Night Long!! Totes ace.

Did I tell you that we joined the National Trust a couple of months ago when we took doggins to Croome Court and haven't been to a NT property since, so we need to get on the case.....

My nan also had her open garden (along with three other gardens) in Kempsey and they raised nearly £400 for the Breast Unit. So lovely.  Mum worked hard that day making tea and handing out cake to people who attended.  Tim and I popped along for a while too.

Dan and Scarlett have also been down to visit.  It was great to see them - I totally went without my headscarf because it was so flipping hot and also I want Scarlett to see me that way rather than hiding away from it.  She didn't seem phased at all.  I'm so, so proud of her as she did amazingly well in her SATs and her school report was awesome (Excellent effort in all subjects) and I can't believe she's going to high school in September. Growing up fast.....

I met up with my work crew a few weeks ago too - they were going out for a drink on Friday night after work and as I was dropping Tim into town as he was off on a night out with his work mates, I took the opportunity to see my lot as well.  It was really nice, but short and sweet as I was then heading out to dinner with the girls.  We had a lovely evening sat at a pub by the canal and I had good old scampi and chips (it was like being 8 years old again)....lovely stuff. 

I have been to lunch with friends too, which has been lovely - I'm usually better during the day than in the evenings when I get super tired.

Sunshine funtime?

Well no actually....this weather can do one.  I'm hardly sleeping (despite having two fans on the go) and, although the hot flushes had died down a bit, they seem to have come back which makes it even worse.  Also, I have to slather myself in factor 50 as my skin cells are turning over uber quickly because of the chemo so I have to be careful not to burn, so I can't just sit out in it either.  I know I sound like a miserable cow and if my house had air con I totes wouldn't mind, but upstairs is like a sauna whether I have the windows and curtains open or closed. It's been really hard in the heat.  Bleugh....

Benefits

Can't remember if I told you or not, but I am now entitled to some benefits as my cancer has spread.  I now receive the Personal Independence Payment (which is the replacement for the Disability Living Allowance).  This helps as from next month I will be on statutory sick pay only (which isn't a fat lot) so the PIP will help me contribute to the bills and hopefully leave some to buy a lipstick every now and again to wear to chemo.

The financial impact of cancer is not one that people often think about, but when you can't work and any sick pay runs out, it can cause significant money worries.  I'm lucky that Tim is still working, although we have already had the conversation about packing it all in and buggering off abroad for a bit, but I think that's a pipe dream with my current diagnosis....

Well, that's about it.... Wanted to check in and say hi just in case you thought anything bad was happening as it's been so long. 

Love to all.  Until next time, Kate. xx