THE Head Shave
Wow, wow, wow....the love and support and donations I have had for my charity head shave have been absolutely unbelievable.
I can't tell you how incredibly humbled I feel to have touched the hearts of so many to want to donate to two causes so close to my own heart, the Worcestershire Breast Unit Haven and St Richard's Hospice.
What turned from a 'shituation' (ie losing my hair) to something that will help others, is fab. I mean, I even had a donation from someone anonymous in the Falklands....that's some geographic charity appeal right there!!
A massive thank you also goes to Claire (my hairdresser) for doing the head shave for me (check out her website and Facebook page); to Tim for filming; and to Susie and Jenn for taking photos, taking the piss (just kidding), giving me Dutch courage and loads of support.
As promised, here is a link to the video of my head shave.... I am now coming to terms with being bald again (but at least I won't be waking up to handfuls of hair on my pillow tomorrow morning). I think the dog still recognises me??!!
Of course, it's still not too late to leave a donation if you'd like, now that I'm living a bald life!! Here is the link to my sponsorship page. Thank you so much.
On the radio
Did you hear Susie and I on BBC Hereford and Worcester this morning? If you didn't, here is a link to the programme (we are at 36 minutes 30 seconds). It was great to go into the studio to talk about my head shave. Suze came with me for moral support and I was so glad she was there as I broke down while talking about Timmy.
But, funny story, when we came out of the studio, the producer said goodbye to us and then said to the receptionist, 'oh, we're expecting two dogs in now' - he then looked at us and said 'oh, I mean actual dogs' as we were giving him a look and calling him cheeky - we literally wet ourselves...it was so funny (maybe that's funnier in my head than on the blog, but I know Suze will be laughing reading this!!).
Wiggy
Also this morning, two wigs I had on order arrived from Hot Hair - they are both 'fun' ones. One in lavender and another in black and purple. If you're gonna do it, do it in style....
I'm not sure what I'm going to wear this time.... Last time I didn't wear the NHS wig I chose, it looked far too 'wiggy', so I mainly went with sort of chemo turban head coverings (is the best way to describe them - you'll know the ones - the ones that scream 'I am a cancer patient'), but it was during winter so I was wearing a hood or beanie to keep warm a lot of the time anyway.
But this time I have bought a proper Boston Red Sox baseball cap and a floppy summer hat too. I don't want anyone to crash their car as they're rubber necking to look at me in all my no-hair glory whilst I am out walking the dog (when I have the energy to do it!!)
To be honest, I haven't got the headcoverings I had before, I think I gave them to someone else. Was obviously hoping I wouldn't have to use them again. Bugger! Susie still has hers though and is lending them to me.
In other news.....
Dr P
My lovely oncologist, Dr Price, will soon be leaving.
I have my last appointment with him on 11 June. He is retiring to Bermuda (why the devil not I say).
Tim and I will both be very, very sad to see him go. We had struck up a real rapport and he is so 'on it' and he's a breast specialist too and who knows if my new oncologist will be! He is also a great believer and researcher into clinical trials (most of you will already know about my clinical trial debacle), and I'm hoping the new oncologist will be as 'on their game'.
I have no idea who it will be. They haven't recruited a replacement yet (as these things take time). It might be a locum for a while (!!! bloody great - someone who has no clue who I am and my history) or it might be shared around the other oncologists that work out of the Rowan Suite at Worcester. Mind you, the clinics are already crazy full so goodness knows what it will be like if that happens. I'll keep you posted.
BRCA (aka the 'Angelina Jolie gene')
Earlier this year (January), mum and I met with the genetic counsellor at the hospital to discuss the possibility of genetic testing. It is something we explored back when I was originally diagnosed in 2008 but at the time it wasn't considered there was a high enough possibility of a genetic link so we weren't tested.
But things have moved on a lot in the last ten years.....
For those who don't know, mum was diagnosed with breast cancer exactly five years before me (Sept 2003). Thankfully hers wasn't aggressive and she had two operations and a course of radiotherapy and continues to be cancer free (thank goodness). However, we are quite a 'cancery' family - my nan died of stomach cancer during my finals at Uni (possibly related to the fact she smoked for her whole adult life), and my Uncle sadly died of it too just a few months after Tim and I got married. There is also some cancer in the wider family.
For mum and I our main concern was Scarlett.
There is only a 5-10% chance of having the BRCA (amongst others) gene, which give a high predisposition of forming breast and ovarian cancer. This is the 'Angelina Jolie' gene and, as we know, she has taken the decision to have preventative surgery with breast and ovary removal. But because mum was only 55 when diagnosed, and I was only 32, it made sense to get tested.
The results were received last week (it takes months) and I am thrilled to say that neither mum nor I carry the gene, so as mum said 'we're just really unlucky' in the fact that we both got breast cancer. But the main thing is that Scarlett isn't at any additional risk. TFFT.
PICC line
So the PICC line has currently been a god send in terms of having the chemo and avoiding cannulas, however, it doesn't play ball as much for the District Nurses who have only managed once (out of the four times I've seen them) to get blood out of it. I am therefore still having to endure weekly blood tests, and to top it all off, they are in my right arm (which I shouldn't have blood taken out of because I've had lymph nodes removed)....it's so sodding frustrating. The chemo nurses manage to get it out each time, but for some reason it doesn't play ball at home with the DNs.
Chemo frustration
I have been up and down with the chemo. And I am so BORED, which is not like me. It's because I can't do as much as I would like (and I'm not going out of the house too much to try and avoid catching infections). I don't seem to be able to read, watch too much crap TV, do any gardening, even walk the dog. I can't get motivated to focus on anything...and there is only so much Instagram and Facebook I can look at in one day!!
It is so incredibly frustrating and this will be my WHOLE summer.
I've had some friends over for coffee and lunch and stuff, which has been totally ace, but it does tire me out afterwards.
I'm usually not too bad on Fridays and Saturdays, then Sunday to Tues I have a bit of a low patch, then Weds I seem to perk up again.
I'm also not sleeping well at all. Hot flushes seem to have come back with a vengeance and while I manage to fall asleep really quickly, I wake up when it's dark and am usually still awake when it's getting light. That is also boring! My mind is going ten to the dozen and I try relaxation techniques but my mind goes wandering again. Sigh. It's also really warm in our bedroom, despite having a fan, so I have been decamping to the spare room and Tim wonders where on earth I am in the mornings!!
However, I am very grateful that I am not getting any nausea or sickness. So I still get a horrible taste in my mouth most of the time, my legs feel heavy, I am dehydrated, my head itches, I feel woozy and tired, BIG appetite (#jabba) and those are my main symptoms so far.
Also, I can't believe I have chemo on my birthday next week. What a way to celebrate turning 42!
Sigh.
Until next time.
Thank you again for all of your support. xx
ps. Don't forget : In support of #chemohead - Twitter, Facebook, Instagram.... Let's see those bags!!
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