If you are reading this then there is a good chance you might have read my first post. If you didn’t you might want to read that first to know where we are with stuff.
I’ve been amazed at how many people read and loved my last blog. Even telling me they are looking forward to reading the next one! Now I know how JK Rowling felt when she had to release her 2nd Harry Potter novel!
Before I go any further I’d like to thank all of you that have come this far with me already (and we have a LONG way to go yet) I am totally and utterly blown away by you all and I’m not just saying that. Getting the odd like on a selfie here and there does wonders for your self-esteem but to have people personally reach out to me and send me messages of love and support has been mind blowing. I’ve heard from people who I’ve not heard from or seen in years, people as far back as primary school! And it means so much. I even squeezed out quite a few tears.
Everyone has such busy lives and has their own crap to deal with so when people take time out to extend some kind words and a personal message, it means so much. I always knew I was popular but wow! I’ve never had so many likes on a Facebook post or an Instagram picture of my tea! Before I know it I’ll be contacted by all sorts of companies wanting me to be an ambassador for their products! Facebook can be so impersonal at times but I do find it’s a great way of keeping in touch with, (or keeping tabs on) a lot of people who you have encountered through your whole life and I like it for that.
After being so moved by all of the messages I’ve had, I’m going to make more of an effort when I can to not just scroll past and hit “like” but to be more personal with my responses. People post things for a reason so I’m going to try and acknowledge that a bit more when I can. If I could have replied to every single one of you with your kind messages for me and Spence I would.
Be Kind
I find myself looking at ladies with short hair all the time recently. I wonder if they have had to have Chemo or if they have just shaved their head? A thought that had never even crossed my mind before! Maybe they did it in support of someone they know who was going through cancer? Maybe they just like having super-duper short hair? Maybe they are a big butch lesbian? There are a lot of people about that I’ve just never noticed before. Its like when we got our motorhome, all of a sudden, every other vehicle on the road was a motorhome, we had just never noticed.
My observation of hairless women has prompted me to think that I need to maybe try and be kinder (sometimes. Maybe) Its made me think that you just don’t know what people are going through and what battles they are facing. That person who pushed in front of you in the queue might be in a rush to get home to someone ill they have been caring for. That person over taking you at speed, might be rushing to attend an appointment where their loved one is being diagnosed with cancer. That person panic buying toilet rolls might be doing it because they need to get it for someone with chemo who has really bad diarrhoea as a result of treatment. Or they might just be a knob! Either way. It will make me think twice before being so judgmental. But don’t worry. I’m not going soft yet! I will still promise to be the rude, blunt, honest Amy that you know. And looking forward to using the C Card to my advantage if and when required.
CANCER FACT: Did you know that if you have a cancer you can apply to get a special “Toilet Card”. This is a card that you can show quickly and easily to staff in shops, pubs and other places (might be handy for festivals?) It explains that you have a medical condition and need urgent access to a toilet. Every cloud and all that….
On the point of panic buying. Unless you need to do it for genuine reasons, please don’t. I wanted to do a big shop this weekend to make sure I had some easy things in for me to cook for Spence while I can or vice versa. We were unable to get rice, there was no pasta and we are currently wiping our bums with kitchen roll. (We thought this might be better than Tescos suggested substitute of the “Multi-coloured assortment of coloured Tissue Paper” Great for crafting. Not too great for bums!
I phoned Tescos to ask how to get access to priority slots for shopping deliveries. I don’t want Spence to have to go in to a supermarket unless he really has too. They were amazing. I explained the situation I was in, they updated their systems and the following day I had access to a few more slots each week.
Boobs everywhere!
Whilst also looking out for bald women, I also find myself looking at other people’s boobs a lot. I don’t know why. Maybe as a way to help me feel better about the fact there are so many different shapes and sizes and to think “would anyone really notice if I didn’t have one? IF I have to have a prosthetic would anyone know?” I have images of being like Meryl Streep from Death Becomes Her!
When I can face it I look at my own. I’m really cross with my boob at the moment it’s let me down big time. We are not really on speaking terms and I can’t even look at it most days. It aches occasionally, presumably still from the biopsy, and it keeps reminding me its there. The lump is quite big and its easy to feel but you can’t see anything. I tried to squish by boob as flat as I could this morning to see if I could tell what I’d look like if I had to have a full mastectomy. I couldn’t tell.
I don’t want to be one to preach but please check your boobs ladies (and men) and promise me you will do it tonight when you get home or tomorrow when you are in the shower. My mum always used to tell me to check them and I did, but never well enough. It was a bit half arsed. REALLY, PROPERLY check them and press hard. This isn’t a romantic fumble this should be an examination. This is you knowing what they feel like now and understanding next time you do it, if there have been any changes. There is a good guide here for all of you who are not sure what you should be doing.
Vacancy for a PA. Apply within
One of the things that I have been amazed at with this whole process is the amount of paperwork and admin that is required. Forms to fill in and send off, people to inform, policies to dust off and finally read the small print on. I don’t know how people who are not computer literate or even on their own would manage to deal with all of this. On top of everything else they have to come to terms with.
One of the most fun things I had to do (not) was to cancel my Feb 2021 holiday with TUI.
As you all know Spence and I love a holiday. We had two booked for 2020. Both of which we had to cancel so we thought we’d treat ourselves to a nice two weeks all inclusive in the Dominican Republic in Feb 2021. A grey, miserable time of year so what better time to go away and get some much-needed sunshine. One of the first things I asked my nurse after my diagnosis was “can I still go on holiday on February?” “No Amy. You wont want to feel like going on holiday. Best not to book anything until at-least Autumn 2021” Bloody hell! Yet another holiday cancelled. My tan is fading by the minute!
Luckily I always get holiday insurance. One of those things I really begrudge paying for but glad I did. Also with a sister who works in insurance I can feel a huge “I told you so” coming if I didn’t.
I rang TUI (who do NOT cross the Ts, dot the i’s and put U in the middle) they don’t give a shit about you. I explained the situation and that due to a recent diagnosis of breast cancer I will be undergoing treatment I would be unable to travel. “OK we can look in to this for you” Confirmed all my details. “Sorry to keep you on hold Mrs Spencer. We can cancel this for you at a cost of £250 per person. Will your husband still be travelling?” Brilliant! Another thing to add on to my list of STUPID things people have said to me. I laughed at her “I think that it is highly unlikely that my husband will be going on holiday while his wife is receiving treatment for breast cancer so I’m going to say no” There was part of me that thought how much Spence would love a holiday on his own during all of this but I was confident he wouldn’t go. I don’t think he’d dare! Plus he had no idea when we were going, where we were going, etc etc. He leaves all of that up to me.
When we had to move our other holidays that had been cancelled earlier that year TUI charged us £1060 for the privilege!!!! The “amendment fee” I was told would be non-refundable. At this point I went mental and was referred to their “exceptions department” This department does not have a phone, so I had to resort to exchanging angry emails in red and BOLD to try and get my point across. It turns out cancelling your holiday due to cancer isn’t an exception. I asked them several times to tell me what on earth was “If you have been diagnosed and didn’t have insurance, we would be able to help you. Because you have insurance you will need to claim the cancellation fee back through your insurance company” I felt penalised for being organised and sensible. Just give me all my bloody money back. That’s all I want. Stop making this so bloody hard!
I took to the TUI Facebook page to air my concerns. Funnily enough within 2 minutes I was contacted by an agent. Within 2 hours I had all my money back, including the “non refundable amendment fee” I burst in to tears on the phone and was very grateful to Linda for helping me get it all sorted. I’m still down £500 so will look forward battling my insurance company to get that back. Something that can wait for another day.
I had to laugh when I got a message on FB the following day ““Hi Amy, my name is Beth and I’m a reporter from Deadline News. We’re a press agency who produce stories for the national media. I saw your post about TUI withholding your refund and I’d like to find out more. Would you be up for answering a few questions about it all for a story? Thank you.” I was excited to think that it might be Women’s Own with my £150 but no such luck. I didn’t bother to reply.
CT Scan results
Prior to attending my CT scan I was advised that I needed to drink at least a litre of water. This was to ensure that I was hydrated and would help the dye move through me if it was required. As you well know i’m not a big one for drinking much, especially water, but I wanted my results to be as accurate as possible so I did my best. At about 1pm I filled my water bottle and finished it in about an hour. This was an achievement for me. Bottle two. This took a bit longer and I was bored of the taste of water now as well as having to go for a wee about every 30 minutes! Bottle 3, done. Bottle 4 I would drink in the car on the way.
By the time I got to the RUH I was bursting for a wee. AGAIN! I handbrake turned in to a drop off parking space, threw the car keys at Spence and darted through reception to the loos. There is a reason I don’t drink much water and I think its because I have a bladder the size of a pea!
Off I trotted to Dept B7 – Radiology. It was spotless. Like it was brand new. It was 6:20pm and apart from one other person there was noone in the waiting room but me. Still sipping on my water, as told, I waited to be called through for my appointment.
My name was called by a nice lady from New Zealand. I could tell from the accent but just to stop people asking her “oh what a lovely accent. Where are you from?” she wore an “I Love NZ” lanyard covered in badges. It cut through any small talk.
I was asked to remove anything metal that I might have on me and then led on a quite comfortable plastic bed which would move back and forth through the CT scanner. As I lay there New Zealand Lady inserted a cannula in to my arm so that they could insert some dye in to me. I didn’t like this bit. Having it sticking out of my arm was an odd feeling but I knew that this was something i’d have to get VERY used too. The dye called “contrast material” is needed for some CT scans to help highlight the areas of your body being examined. The contrast material blocks X-rays and appears white on images, which can help emphasize blood vessels, intestines or other structures.
I had been forewarned by a couple of people that when the dye starts running through you, its a very odd, warm feeling and you feel like you have wet yourself! Great. With the amount of water that id drunk that day I wasn’t going to be able to tell if it was the dye or if I had actually wet myself!
New Zealand Lady left the room and went to join “Alan” the CT scan operator in another room and talked to me through an intercom.
The machine fired up and I was posted through it. “Breathe in. Hold. Hold. Hold. Hold. Hold” then the machine posted me back out and I could breathe normally again. This happened a couple of times and then the dye went it. It was a very odd feeling. It started to feel warm up my arm, then in my throat, my chest, my stomach and then down to my waist. I didn’t feel like i’d wet myself but weirdly found it quite comforting. It was like when you turn a heated seat on in a car or lie on a heated bed for a massage. Another image taken and I was done. From entering the room to leaving I was in there no more than about 15 minutes.
As I was posted back out of the machine I caught a glimpse of myself in a sheet of clear plastic that had one of the sensors behind it. My hair was scraped back, mask on, no make up. I looked bloody awful and my heart sunk. My eyes welled up with tears and I remembered again that I have cancer.
What do you mean when you say I’m strong?
adjective: strong; comparative adjective: stronger; superlative adjective: strongest
- Having the power to move heavy weights or perform other physically demanding tasks – powerful and difficult to resist or defeat. able to perform a specified action well and powerfully. powerfully affecting the mind, senses, or emotions. exerting great force. forceful and extreme, especially excessively or unacceptably so.
- able to withstand force, pressure, or wear – not easily affected by disease or hardship. not easily disturbed, upset, or affected. firmly held or established
- very intense (this one made me laugh)
So many of you have told me how strong I am. I can do this because I’m “so strong”. I’m a “strong woman”. The “strongest woman they know”. It makes me laugh. Its lovely that you think that but I have no idea what you see? is it because i’m a hard faced cow that you think i’m strong? I guess I’ve been through my fair share of crap in my life but I’m not sure that’s made me strong. I would say if anything I’ve become more resilient but I don’t know if that is a good thing? Its made me less likely to stand for any crap and I know that I don’t suffer fools gladly.
A definition of resilient is “someone or something that bounces back into shape or recovers quickly. E.g elastic being stretched and returning to its normal size after being let go” but even elastic bands come to a point where they don’t bounce back or snap!
They do say anything that doesn’t kill you makes you stronger but ENOUGH now. I don’t want to get any stronger thanks. I’d just like to take the life experiences I’ve had and leave it at that for now. An easy life would be great after all this. It might sound like a silly thing to say but all of this is very inconvenient. I keep saying to Spence that I just can’t be bothered with it all. Not in the way that i’m giving up at all as that is not the case. Just that it is a pain in the bloody ass. All the fussing about and time it takes up. All the time i’m going to have to make up when all this is over and done with. I’m going to need a AT LEAST a month long holiday after all this.
Recognition Awards:
As previously mentioned, you have all been amazing and supportive so far but I want to give a few shout outs along the way:
I’d like to thank Hayley and Amanda for checking in on me EVERY day, whether I want them to or not. Jaz for trying to help me to cure my cancer with vegetables and reminding me that pick and mix is not the most nutritionally balanced diet. Jen for sending a beautiful silk face mask which is soooooo much easier to breath in (Spence refers to as it a “50 shades of Grey face mask”) and Sarah and Fi and others for being so open and honest with me about your experiences of dealing with cancer (as well as some scary boobs pics)
And of course to Spence. He has enough on his plate to deal with me at the best of times but having to deal with Amy the patient (or impatient) is not going to be easy. So far he’s doing a pretty good job. This week he has even managed to rustle us up a pasta bake for our tea. Considering what is going on I’ve only told him to F**K off once so far which I think is pretty good going. On my part.
Hot Dates for the Diary:
- 8th October – MRI Scan. I didn’t think that one of these would be required but after having discussed with Kate (my cancer nurse) that I’d like to save as much of my breast as possible, I’ve been told I’ll need one. It’s not cause for any concern but is just another thing they can do to get a fuller picture of what they are dealing with. It takes about 40 minutes and involves being in a noisy tube face down with my boob through a hole! Other than that, I do not know any other details.
- 9th October – Meeting with Nicky (Consultant surgeon) to discuss the results of my CT scan and hopefully the HER2 results will be back.
- 16th October – Results of MRI Scan
- 20th October – Provisional date for surgery (highly unlikely. Again)
Also need to get on and get a flu jab as soon as possible.
In the words of Destiny Child….
“I’m a survivor (what), I’m not gon’ give up (what)
I’m not gon’ stop (what), I’m gon’ work harder (what)
I’m a survivor (what), I’m gonna make it (what)
I will survive (what), keep on survivin’ (what)”