Head shave update
Quite a lot has been going on since my head shave. One of the main things is that I've raised OVER £5,600 for charity - I'm so chuffed.
I was interviewed for BBC Hereford and Worcester radio again to provide an update and as soon as I did that, I got another £50 in donations. Hoo-blinkin-rah. I know I've said so many times but I'm honestly completely blown away and overwhelmed by people's generosity, including complete strangers.
My You Tube video has also had over 4000 views - wowzers..... I don't know who all those people are, but if it goes some way to raise awareness of the charities and understanding of what it's like to have to endure hair loss because of chemotherapy then I'll be super chuffed.
So far when I've been out in public, I've totally worn it with pride....it hasn't really bothered me (although I have worn a lot of lipstick).
I've attracted a few stares, but I'm used to that....I remember the same thing happening ten years ago. Also, it's been too darn hot to even consider wearing my new funky wigs, but I did wear the lavender one out for afternoon tea with mum and nan this week and it got a great reception - the only problem was I hadn't pulled it forward enough so I had a huge gap between my eyebrows and the beginning of the fringe - what a knob!
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| With nanny (who's 94!) |
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| Juney |
However, my Grade 2 cut has continued to fall out a lot, looking super patchy, and my head has been sore and itchy with dandruff (nice), and has got a lot of spots too - ouch. Therefore I asked Timmy to take it down to a Grade 1.
I now look like a cancer patient - sigh. In fact, I've got a feeling that it might come out fully (rather than leaving me with a VERY short buzz cut like ten years ago) as I have some completely bald patches where you can see the hair follicle space, but there's no hair in it. That will be quite novel as I didn't go super smooth and shiny before. We'll see. But either way, I know I need to try and wear it with as much confidence as I can muster (although I'm struggling with that as I write this).
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| Yep, that's the look of a cancer patient right there (although in my defence I have zero make up on in this picture!) |
Oh, the other thing is, I won't need a bikini wax any time soon either as, like before, all that has fallen out too - every cloud hey?!
Chemo 4
The day after the head shave was due to be Chemo 4. It was a 9am job, so Jenn kindly picked me up in her new convertible (soooo much fun) with her bunny ears and my Hello Kitty ears and we headed up to the hospital.
We were waiting about 15 mins when Tuney called us through to the chemo chairs - we sat quite closely to the one with the radio so we could listen to some tunes. Everyone was loving the ears and the nurses were really chuffed to hear about my fundraising total too. Yay.
We settled in with green juice and almond croissants for brekkie (one of my faves, courtesy of Jenn).
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| No. 4....or so we thought..... |
They took off the dressings from my PICC line and, as usual, attempted to take blood out of it. Hmmm, they couldn't do it..... they had me in all sorts of positions, but it just wasn't happening. This was the first time that the chemo nurses had been unable to draw blood out.
Then, they put some saline through it (as normal) but said that there was no draw back of the saline (which has never happened before either). The question then came 'have you had it x-rayed?', which I hadn't as it's only been in four weeks. They were concerned about it so they had to speak to the chemo Dr on duty and they all agreed that I should go for an x-ray.
Jenn and I left our stuff in the chemo suite and then headed downstairs to the x-ray department - full of life's rich tapestry in that waiting room.... it's where they do normal x-rays, ultrasounds, nuclear medicine (e.g bone scans) etc.
I had a sudden urge to go to the loo (that's something that I'm suffering with during the chemo, but on this occassion it was exacerbated by nerves too).
I was eventually called through and had to take off my bra and necklace - the whole thing took about two minutes, but then it took me longer to get my bra back on as I had my PICC line just dangling from my arm and Jenn had to help me get dressed as I was in an awkward position.
We made our way back upstairs and waited, and waited, and waited.... Eventually I asked what was happening and apparently the chemo Dr was issuing some prescriptions and was then going to take a look at my x-ray. This whole process took about 2 hours. Jenn and I even started playing cards (gin rumy) - I had to teach Jenn how to play.
I had a bad feeling about it all.... I've had issues with my PICC line since the beginning as regular readers will know. Jenn was making me feel better by going through all the scenarios and working out worst case to best case (legend) and was keeping me calm.
Then the news I was expecting.... Peng, one of the nurses, told me that my PICC line had moved - in fact, it had more than moved - it had a huge kink in it, which meant that if chemo was given through it there was a possibility that it would have a break in the line (where the kink was) and that could mean that the chemo drugs would displace around my heart and it would be curtains. OMG.
Jenn and I just looked at each other. At this point there was discussion about it coming out and being replaced and chemo delay, but again, the nurses were waiting for the Dr to make a decision.
We didn't have a clue how they removed a PICC line but we soon found out....I thought it would have to be done down in radiology again etc, but no, that certainly isn't the case. So the outcome was that it would be removed in the chemo suite (with everyone else watching and sat having their chemo), they would arrange to get another appointment to have a second line fitted, and that chemo wouldn't be happening today. FFS.
So how do they remove a PICC line? Well, they ask you to take deep breath and then they just yank it out! Now, bear in mind, that I've got 50cm of the line in through my arm up towards my shoulder and down into my aorta (main artery in the body and not areola (I kept saying aerola instead of aorta - what a knob) - Jenny from Agatha Gardens and I have had a good laugh about that one!!), so it was a big tug and out it came, it took at least three deep breaths for it to come out and I could feel it - it was bloody awful. I just kept eye contact with Jenn the whole time and when it was out I broke down in tears on her shoulder. It was all so flippin' traumatic.
Once I'd calmed down and I'd been taped up over the little hole where the line had been, I was told my chemo would be scheduled the day after at 1.30pm as they were unable to use my left arm again that day, so at least it wasn't going to be massively delayed. They also said that I would be able to carry on my Thursday regime the following week.
That was over three hours in the hospital.....crikey.
I should also note that I have developed an allergic reaction on my arm from all the dressings that they used over the PICC line. That is unlike me as I don't have sensitive skin or allergies (apart from hayfever) normally, but your skin can change on chemo so that's probably got something to do with it.
On Friday I went back in with Timmy (and Jenn joined us later as she works really close to the hospital) and I had to be cannulated. This is my first chemo cannula since I had it 10 years ago. And yes, they still use those vile wheat bags that they put in the microwave to put over your arm to warm up your veins. That's why I can't stand the smell of those things anymore, bleugh. Back in the day they also put your hand in a bucket of really warm water....but they don't do that now.
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| Actual Round 4 |
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| #stronggirlsclub (not a flattering photo #jabba) |
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| Cannula fun |
Our fave nurse Tuney was in charge of cannulating me and I asked if she could not do it in my hand (I can't bear that), but put it slightly further up my arm, which she did and got it in first time. PHEW! It was totally fine and the chemo went ahead as normal.... No 4 finally completed.
I mentioned that I hadn't been sleeping well - I manage to get to sleep, then wake up about two hours later and am awake for hours. I was prescribed some sleeping tablets - I've never taken any before, but needs must..... I have also stopped taken as many steroids as prescribed as I'm not really getting any nausea (which is a good thing), and that should mean that it helps reduce the munchies that it gives me (although I'm not seeing that so far!!!).
It's my party and I'll cry if I want to
This week has been my birthday week. I am now 42. It's been a bit up and down to say the least.
Last Sunday was mum's birthday so we had mum and dad over for a lamb curry (mum's request) in the evening. I knew something wasn't right then. I felt a bit run down and tired and not very sociable.
Monday morning all became clear as I realised that I'd started to develop a bit of a cold. Now, anyone who's had chemotherapy knows that you have to be sooooo careful when undergoing treatment as your immune system is bascially knocked out for a few days and therefore any infection can kill you! Jeepers. I kept a low profile.... A cough started and on Tuesday morning I knew I needed to call the chemo helpline. I felt shit. They said I needed to go to the Drs to get my chest listened to to make sure I didn't have a chest infection and to also keep taking my temperature. Thankfully, my temperature was fine. I wasn't allowed to sit with all the commoners in the waiting room either in case I got something off them.
I called the Dr and they said I could go in at 9.45, but I needed to stay at home to wait for the District Nurse first who was coming to take my bloods, so they asked me to call back when the DN had been.
Lou (the nurse) arrived to two surprises, one I had no hair, two I had no PICC line.
She tried to take blood from my right arm as usual and, despite me drinking shedloads the day before, she couldn't do it. She tried again and still nothing. Just what I need. So she called the DN team and asked if the phlebotomist nurse could come over. I therefore had to wait for another 45 mins but she managed to get my bloods done - 2 nurses, 3 attempts. I then called the Drs again (it was about 11.45 at this point) and they said could I come straight away. I said I needed to call Timmy and get him to come home from work, pick me up and take me down there as I didn't feel up to driving as I was rough.
Timmy therefore spent his lunch hour fetching and carrying me to the Drs (while he said he was meant to be going into town to get the last of my b'day stuff - bless him). Thankfully I had no chest infection. I did have a red throat and my pulse was really racing, but my temperature was OK. I was prescribed some antibiotics and sent on my way...
By Wednesday I was well and truly fed up, my cough had kept me (and Tim!) awake all night and I felt dreadful. In the afternoon I therefore decided to de-camp to mum and dad's and that did me the world of good. I'd totally had cabin fever and needed a change of scene. By Weds eve I'd started to perk up and even made some cakes. Good job as the next day was my birthday.
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| I took doggins to Juney's....he's so helpful in the garden |
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| Hiding from the sun as my skin is sensitive due to the chemo |
Now bearing in mind I was meant to be having chemo on my birthday, I thought it was going to be a bit of shit day, but actually I had a much nicer time than I was expecting. My main worry was that they wouldn't give me the chemo because I still had a cold.
I felt much better when I woke up (I'd still been up in the night with the cough, but not as bad) and Timmy had got me lots of balloons and I sat in bed and opened my cards. I took the dog for a quick walk while Tim put the pain au chocolat in the oven (birthday tradition - my favourite) and then we had to get ready to go as I was in for chemo at 9am, so left at 8.30 with the cakes, balloons and some new funky headwear I'd bought.
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| Birthday brekkie |
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| Roses from Timmy |
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| When two of your fab friends buy you the same card |
The atmosphere in the Rowan Suite was really nice because of my birthday. The nurses were super happy with the cakes (and Timmy and I had one to try too) and lots of people wished me happy birthday (including other patients). The wife of one of the patients came up to me as said 'I love your head wear, it really brightens the place up' - yay.
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| Birthday chemo |
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| CAKE |
I had to explain to them that I was on antibiotics and had been poorly. They said my bloods were fine and as long as I felt well enough to have the chemo, then it could go ahead. I went for it as I was feeling better than I had and didn't want to delay the chemo by another week. I was cannulated again, and thankfully it was first time and we were done really quickly. We stopped off at the supermarket on the way home and then when we got back I opened my pressies. Wahoo.
Timmy and I chilled at home with Rocco and then my choir leader from Got2Sing Cathy sent me a
video. They had all secretly filmed 'happy birthday' for me at Monday evening's rehearsal and I was so touched that it made me cry. Bless. I can't go to choir at the moment as I don't have the energy on Monday eves.
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| My reaction |
Later on Jenn and Susie and popped in to say 'hello' and happy birthday on their way back from work. All the crew were originally meant to be coming over for a Mexican feast, but I knew I'd be tired from having the chemo in the morning and also had to be up the next morning to go back to the hospital for 9am, but more on that shortly.
So in the end mum and dad came over for a small BBQ and we kept it low key. However, I was super surprised when I got a call from the one and only
Lisa Eldridge. Now regular readers of my blog will know I go a bit 'fan girl' for Lisa as she is one of my heroes and a make up guru. It was so lovely to talk to her - she knew it was my birthday so wanted to wish me a happy day and catch up. We had a good old chin wag.
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| Snags on the barbie |
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| Juney and doggins |
And that was me turning 42.
The morning after
Friday morning, 9am. The insertion of my second PICC line. I know, right?! Jeez. What a week.
Thankfully I was feeling much better on Friday morning and we headed up to the hospital. I couldn't believe I was going through this again.
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| Velcro heads? |
I was so relieved as it was a different consultant this time and I liked him a lot more. I explained to him what had happened over the last few weeks and he was really sympathetic and said that if this didn't work then I could be fitted with a Hickman line before my chemo next week (that is where you have a line inserted directly into your chest and you have to be sedated to have it put in etc).
I was actually meant to be having the same consultant as the one who did it before (and couldn't get it to bleed when he put it in), but he had a meeting he had to go to...
It actually all went really smoothly and was much quicker than the time before. Again, the worst bit was the local anesthetic which stung A LOT. I had one of the same nurses and we chatted. Also, I didn't have the camera hanging over me for long like last time so my neck wasn't at a funny angle and I haven't had nearly as much soreness afterwards as I did before. He also managed to get some blood out of it when he inserted it, so I'm really keeping my fingers crossed that PICC number two works. We'll see when the district nurse visits on Tuesday.... Wish me luck.
Local Press
Oh, I forgot to say, I was also in the Worcester News on my birthday about my headshave. Yippee. Then in the same email correspondence with the local paper, was asked if I would be interested in writing a weekly column for them based on this blog. They said it was really engaging and I had a good style of writing. I won't get paid, but will be able to advertise any fundraising that I'm doing and it can act as a platform for me to mention the charities too.... I was absolutely thrilled. The first column comes out on Tues 12 June, so if you search 'Kate Butler' on the
Worcester News website, you should find it.... So exciting. Yay.
Benefits
Just thought I'd give a quick update on benefits too. As my cancer has now progressed, my breast cancer nurse Sue liaised with Macmillan again regarding PIP (which has replaced the Disability Living Allowance) and having previously been turned down, I am now eligible, which is a massive weight off my mind as I will soon be on statutory sick pay only, which isn't a lot! I'm so grateful.
Right, I'm offski now as I'm really struggling today. My legs are heavy, my body feels heavy and I have no energy. It's been difficult to finish the blog to be honest.
Take care one and all.
Until next time. xx
