This week has been a difficult one, hence I wasn’t really in the mood to sit and write my blog. When Alan asked me why I hadn’t updated I explained I couldn’t because I wasn’t in a jokey, upbeat mood. He then reminded me that this blog is supposed to be a “warts and all” diary of how I am feeling and should include both the good and bad days. That there will be times I won’t always be able to make light of it all and crack jokes – this week was one of those.
One of the reasons I started my own blog is that I found a lot of cancer blogs quite depressing and some of them actually made me more scared than I already was. However, as its also been pointed out to me, this blog is for me as much as anyone else, so although I don’t think this post will be as light-hearted as the others, it will be a truthful account of how I felt this week. So, here goes….
Since I found out I was having chemo I have been asked many times “are you worried about losing your hair/does it bother you?”, my stock answer was “no, it’s just hair, it will grow back” and I honestly believed this. However, that was before it started falling out in clumps, I was far more upset than I had thought I would be. I suppose it brought it all home to me that this is actually happening to me. As I mentioned in my last post, my hair started coming out in the shower on Friday (with the amount of hair we removed from the shower trap, we could have knitted our own Wookie) and it got steadily worse over the weekend. If I so much as sneezed, shook my head or even if one of the hamsters farted – tufts of hair would fly out – I was in competition with the cats as to who could produce the most hairballs… and I was winning. My head was incredibly itchy and so sensitive – just laying on my pillow hurt my head. No wonder then that my mood took a nosedive and Eeyore made an unwelcome return, moved in and took over control of the banjaxer (tv remote control to the rest of you).
I hardly slept Saturday night and woke up on Sunday tired and miserable. Although the previous evening I’d promised Hannah I would try and keep my hair for at least another week to give her time to get used to the idea, she was getting quite upset at the thought of me having it shaved off, when Sunday morning finally arrived I had to explain to Hannah that I needed to break my promise. I told her how sad it was making me and that I knew I would feel a bit better once it had all gone, although she was upset, she understood.
That day we drove back to Lakeside and re-visited the wig shop, Suzis. The ladies were lovely and helped me try on the original long wig I had seen the previous week and also some very short styles. Seeing as I had my hair cut short the previous week, I wasn’t sure if I could get away with suddenly re-appearing at the school gates with long hair again. The shorter styles looked awful on me though and were not available in the spec that I wanted ie. synthetic (the “hair” only needs to be washed once a month and dries back in its style – no blow drying or straightening required), lace cap (this makes it very difficult to see where your scalp ends and the wig begins) and monofilament (this means that when the wind blows the “hair” lifts and parts just like normal hair). It is the more expensive style (£370 in my case – however the government generously give you the VAT back), but the amount of people it has fooled – including my brother, his fiancé and my chemo nurse, means it was money well spent. Actually Mum and Dad have very kindly bought it for me, so it was their money well spent! Thank you Ma & Pa – love you lots xx
After giving it some more thought I realised that only my close friends would be aware I was wearing a wig, that most people wouldn’t remember that I’d had my hair cut short the previous week so, I finally settled on a mid length bob, the same style my hair has been for a few years now. The colour is dark brown with blonde highlights and is very similar to the colour I usually have done by my hairdresser. I have named her Lola – she is my alter ego and I am stating now that any bad behaviour over the coming months will be her fault (I think that’s called a “get out clause”). It will go hand in hand with the “Cancer Card” my friend Rachael has made me. She also made Alan a “Nursie Card” which gives him permission to take my bloods and flush my PL – he’s thrilled with it! I swear that man missed his calling.
When we got back home we borrowed some hair clippers from my brother and Alan set to work. My hair was still so thick though so it took quite a while to shave it all off. I admit to having a few tears during the process. Although I did feel a little bit better about making the decision and “taking back control” (which seems to be a huge thing on this “journey” I have found myself on).
At my weekly chemo appointment on the Monday, the nurse had said I was tolerating Taxol so they could lower the steroids. Although I was pleased as it meant I could cancel at least two of the food deliveries I was having from Mr Tesco each week and therefore might not have to send the kids out to work to pay for all the extra food. It also meant that I suffered quite a few of the side effects including; nosebleeds, numb fingers, feet and lips, flu like aches and pains, fatigue, constipation and the horrible problems that leads to, pounding headaches, cramp in my feet and that horrible chemo iciness – if you remember the Ready Brek advert with the little boy going off to school with a red outline all round him? Well, its like that only it’s an icy blue outline and it certainly doesn’t give you that warm glow. I think some low level depression set in as well.
The only website I have looked at since diagnosis is Breast Cancer Care (see the link at the top of my blog), but even on their forums there are areas I hadn’t ventured into such as End of Life and Secondaries – stupidly I found myself looking at these pages and ended up depressing myself all the more. There has been a thought at the back of my mind since I started treatment – what if it doesn’t work? After all there are no guarantees, the Drs can’t guarantee that the chemo will work – they only hope that it does. So, now, until I get another MRI which tells them if its shrunk or not, I have this niggling worry at the back of my mind – it’s not easy to live with I can tell you.
By Thursday I was on my knees, totally exhausted and fit only to lie on the sofa and watch crappy daytime TV. I have a cleaner now who comes once a week for two hours or so, I am so thankful to my sister for organising this as it really does take a weight off my mind to know that the house is at least clean and tidy.
The same sister, Gill was visiting for the weekend and I was worried I wouldn’t be well enough to see her or James, my baby nephew. Then she called me Thursday afternoon to tell me she has a thyroid problem and her Dr isn’t sure if it’s bacterial or viral. Gill told the Dr about me and was advised to stay away from me. After reassuring Gill that we would get round it I put the phone down and sobbed – cancer is a shit (sorry for the bad language).
GORY BIT ALERT!
Friday morning rolled round and this was the first time Alan would be taking my bloods. I was dreading it, having to deal with blood at any time makes me feel queasy but at 7am, when you’ve just woken up – that’s just NOT funny. He set up the sterile area on our bed and prepared the tray, as the nurse had shown him. I am so proud of him, I don’t know that I could have done it if the roles had been reversed but he managed to fill the two vials that the hospital had given us. He had a bit of trouble transferring the blood from the syringes to the vials then had a brainwave and used a needle to pierce the vials – job done. Vlad went off to work whistling…
Later that morning, Rachael, Susanne and I went into Rayleigh for our Friday morning “walk” (the walk bit has been suspended for a while but I am hoping to be able to manage it again soon) and for me to drop my bloods off for testing. Usually we mooch around the shops for an hour or so then finally end up in Costa Coffee and spend another hour putting the world to rights. However, I was feeling so unwell that we were back home again just an hour and half later and I spent the rest of the day sleeping on the sofa.
Gill & James arrived Friday evening having spent all afternoon on a train from Newcastle. Hannah was so excited that I got myself together and drove us both over to Mums in order to be there when they arrived. It was lovely to see them both and James has grown so much since Fakemas, he is such a happy little fella. Trina brought Freddy over and the two cousins got to know each other a bit better, there was a bit of head-locking, some tandem screaming and a lot of laughing. By the time it came to go home I was pooped and could barely keep my eyes open. Dad insisted on driving me home and thank goodness he did, my concentration span is nowhere near as good as it was before hand. I’ve also noticed my eyesight seems to have been affected (despite having had laser eye surgery in 2008) but again, I’m not sure if this is the tiredness. Hopefully, it will be another side effect that goes away when the chemo finishes.
The weekend was lovely and we got to see lots of Gill & James but I felt guilty for not being at my best and, in a weird way, I was actually looking forward to Monday and my next dose of chemo as I knew I would be feeling ok again for at least two days (I have come to realise Tuesday and Wednesday are my best days).
I am going to seriously look into Complementary Therapy, my liver feels absolutely huge and is so uncomfortable (probably because its full of toxins, as it was pointed out to me). Also, I feel as though I am just having things done to me at the moment. I need to be doing something other than having poison pumped into me once a week. I will be speaking to my Breast Care Nurse next week to find out what exactly I am allowed to do as this inaction on my part is getting me down. I’d like to start running again, or at least attempting a fast walk. My friend, Tracy, has entered a group of us into the Basildon & Billericay Race for Life on Sunday 24 June and I know I will be a “walker” but I’d at least like to finish it in a decent time. We are called the “Mums Wot Lunch”, numbers are building with mothers and daughters on our team, lets hope the sun shines on us and we raise a lot of money.
Well, I think I have covered just about everything that happened this week so I am going to sign off now.
As always, Onwards & Upwards (though I’m sure this hill is getting bloody steeper by the week!)
Debs
