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.
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| 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!!
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| Sore |
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| 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)
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| 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?
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| 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.
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| 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
