I’m dedicating this one to Kurt and Kieran who I know have been eagerly awaiting the next chapter in this story …

After sitting in my conservatory watching the new bird feeder I had for Christmas, in the hope that some rare, crested thingy-me-jig might land on it, I decided that I’ve put this off long enough and its time for another blog. When I say put it off, I’ve wanted to write one, but the first round of chemo has been so much fun I’ve just not had the chance.

Round One – or so I thought…

On Wednesday the 9th of December, after a very restless night and lots of tears and pepe talks, I packed my well researched bag of “essential chemo stuff” and set off to A12 at the Bath RUH for the first infusion of what is lovingly known as FEC-T (I know! What a name. I sound like an Irish man swearing every time I say it!) It’s an abbreviation for all of the lovely drugs the pump into you.

  • 5 Fluorouracil (also known as 5FU)
  • Epirubicin
  • Cyclophosphamide
  • Docetaxel (also known as Taxotere)

I wandered into the William Budd ward looking terrified. Of course, due to dreaded COVID-19 Spence was unable to come with me. I’d made him a flask of coffee and a packed lunch and he’d decided he would just sit in the car and wait for me for the next 4 hours!

I was asked to wash my hands and take a seat in chair 8. They were well spaced out and no one sat near me, but I was the youngest in there by about 30 years. None of the patients had to wear masks so they all gave me a “you poor b*stard” smile as I sat in my seat waiting to be seen.

A huge black lady called Emma was my nurse. Considering I was a first timer she didn’t seem too worried about putting my mind at ease about what was happening so in true Amy style, I questioned her to within an inch of her life. I think it even made her think about what was going on.

I sat in chair 8 for 30 minutes before anything finally began to happen. The first step was to get the cannula in. I’ve had these several times before so was not too worried about it going in, just don’t like the feel of it when it’s in you. Emma inspected my hand, tapped my veins a few times and decided to go for one on the top of my left hand. It hurt like hell! And didn’t go in far at all. She hit a valve apparently and I swore. Off she trotted to get some warm water to put my hand in. apparently this would help to get my veins up. It didn’t. second attempt at cannulating me was in a vein down the side of my left hand. That hurt like hell as well and I was in floods of tears. She’d hit another valve. At this point Karen, one of the breast care nurses had come in to see how I was getting on. I cried at her, a LOT. She was brilliant and sat and tried to reassure me.

“shall we have one last go?” Emma said. “I’ll go and get my colleague and she can try. Your husband can come and sit with you if you like?” I’d come all this way and psyched myself up for this to happen, I couldn’t go home now. Through my tears I pulled up my big girl pants and agreed to one last attempt. I didn’t want Spence to come in and see me like this, so we just went for it. Another nurse tried and still no luck. Yet another bloody valve. This time on the other side of my hand, right by that lump you have on your wrist.

There was no other option other than for me to go home and come back the next day. They’d booked me in to have a Picc line fitted on my left arm which would make administering the drugs, taking bloods etc a lot easier. Whilst I hated the thought of having to go back the following day, at least we had a solution and I’d know longer have to be a human pin cushion. Spence pulled up outside and took me home.

The PICC Line

Thursday morning bright and early off we went again to get the Picc line fitted and have chemo.

“A Picc line is a thin, soft, long catheter (tube) that is inserted into a vein in your arm. The tip of the catheter is positioned in a large vein that carries blood into the heart. The Picc line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for taking blood”

I was going to be there for at least 5-6 hours in all so decided it would be best for Spence to go home rather than have to wait in the car for me.

 

Off I went to B7 – Radiology. The same place I’d been for my CT and MRI scan. I was taken to a small side room and asked a series of questions so they could make sure they had the right person and to talk me through the procedure. I have to say, considering what it is they did, it was quite painless. The main pain was the local anaesthetic going in but after that you don’t feel much at all. After 20 minutes I was done and trotted off to A12 to get the first round of chemo done.

Chemo – Take Two

Chair 8 was empty again, so I was shown to that one. They are big comfy recliners but that is about all that is nice about that room. It was really busy today. Even though I had an appointment I was lucky to get in. They were running behind and some people were being turned away and asked to come back in an hour or even longer!

Emma was there again today and would be my nurse. The first thing to do was to check who I was and why I was there. I have this well-rehearsed now. “Amy Alexandra Spencer. 10.6.83 treatment for breast cancer” Still hate it every time I have to say it.

As I was trying cold capping to save my hair this added 2 hours on to the treatment. The next thing to do was to wet my hair. Not soak it but make sure it’s wet all the way through. This helps the cold spread more evenly over the scalp. Next is to cover my hair in conditioner. This stops it sticking to the inside of the cap when it freezes to -15 to -40 degrees Fahrenheit (not sure what that makes it in Celsius?)

The rubber inner cap is then placed on your head. It’s a tight fit but not uncomfortable. On top of this is another fabric cap with cords all over it so it can be tightened. Once all of this is secure you and plugged in and off you go. The cap needs to be on for 30 minutes before any of the drugs are given to you. The first 15 mins are VERY cold and uncomfortable, but you do adjust after a while and then your whole body feels cold. Luckily, I’d read up on this before hand so had thick clothes on to keep me warm. As part of my “Chemo Kit” I had also packed a blanket, but this wasn’t needed.

After 30 minutes Emma came over with a HUGE tray full of almost comedy sized syringes of the brightest red drug you’d ever seen. Lovingly known in chemo world as the “Red Devil” straight out of a lead lined box, straight into my arm.

The chemo drugs for some reason can’t be administered by a drip so the nurse had to sit with me for an hour and syringe them into me one after the other. I also had to have two ice lollies during this process in the hope it will prevent mouth ulcers forming. Same idea as cold capping, just in your mouth. To be honest I didn’t really want an ice lolly but did as I was told.

After all the drugs were done, I had to then have the cap on for another 90 minutes then I was able to go home. They can unhook you during cold capping which was good as after all the liquid I was bursting for the loo. “Your wee will be red for a few days when you go. You need to flush twice and wipe the seat. Don’t let anyone come into contact with it. Oh, and wash your hands really well” WHAT THE HELL? How awful was this stuff and if that’s the case, why are you filling me full of it? Emma was of course right, my wee was the brightest red you have ever seen. This lasted about a week.

I had my iPad with me while I was having chemo in the hope I could just sit and watch a film but between Emma telling me about her life story, uncomfortably making small talk with other chemo patients and fannying around on my phone updating everyone with what was happening, I didn’t have time. I started watching Hook and got as far as him meeting the lost boys for the first time and I was done!

Spence came back to get me, and I was done. One down 5 to go. Only time would tell how I’d feel and which, of the monster list of horrific side effects I’d feel.

We got home about 5:30pm on Thursday night and by 7:30pm I was in bed as I was shattered. I woke up on Sunday!

Side Effects

So round one of chemo totally and utterly knocked me on my ass. I don’t remember waking up Friday or Saturday other than to take the tablets they gave me and to have a wee. I was out cold. I ate nothing. I had a bit of nausea but just had no appetite at all. I drank very small sips of water but all I wanted to do was sleep. And this was the kind of tiredness no nap in the world could shake off. It was fatigue. A whole different ball game. I was too shattered to do anything. I couldn’t walk upstairs to the lounge, I had to get Spence to help me go to the bathroom. I did nothing. My phone was going off with people asking how I was. I was too tired to read it let alone reply. I stayed in bed the whole time with both dogs keeping their silent vigil outside the bedroom door. Even when Spence tried to get them to come and sit with him, they were having none of it.

On Sunday I was awake, for a bit. All I fancied eating was clementine’s. Spence lovingly began arranging these in to faces, or artistic scenes to make me smile. It did.

I was able to sit upstairs for a short time, but I was shattered and with no food or drink it me, it only took me a very short space of time to become exhausted again and need to get back in to bed. I felt sad that Spence was so alone with all of this. He could do nothing but wait and help me when I was awake.

On Tuesday the district nurse had to come out and flush the Picc line with saline to keep it sterile and working. I hated it with a passion. It hung out of my arm and was sore. It bled all the time, and I couldn’t bend my arm properly. I could not shower on my own and had to spend £20 on a bloody waterproof cover to go over it. It was making me feel like a cancer patient. There is no way I could have this in for 16 weeks. But what was the alternative? I had no option. I tried to adjust to it and to get my head around this being part of me for now.

The nurse also had to start with 5 days of injections. This was an injection to increase my white blood cell count and stop me becoming “Neutropenic” when you have no immune system and are incredibly vulnerable to any kind of infection. I was told one of the side effects of these are a mild bone ache.

Wednesday, I managed to stay awake all day and even had a bit of an appetite even though food tasted of nothing and I had mouth ulcers.

Thursday – Back in bed all day with a headache and feeling shattered. I was beginning to keep a diary of how I was feeling each day and starting to see a pattern. Day awakes. Day in bed to recover.

Christmas Trip to A&E

By Saturday 19th December all the injections been done, and I’d got away with no aches at all this time around. One good thing at least.

At about 4pm while Spence was out with the dogs, I began to have a very unusual pain at the bottom of my rib cage. Over the course of about 15 minutes this had moved to my lower back and the pain was worse. Maybe this was the “mild bone ache” I’d been expecting. I phoned the 24-hour chemo line we get access too for advice. They suggested I phoned an ambulance! GREAT!

I rang 999 and requested an ambulance. They had no idea how long this would take but was “on its way” so was Spence. I called again 20 minutes later in a lot more pain. Within about 30 minutes it was here. “I think I know you?” said the first paramedic. I had no idea who he was.

They plugged me in to a million machines and could see that my heart rate and blood pressure were up due to the pain. “You are going to have to come to hospital with us” I burst into tears. The last place I wanted to be right now was in a hospital full of people and germs and COVID-19!

“I need to put a cannula in your hand to give you some pain relief” “NO BLOODY WAY” due to having my lymph nodes removed I am limited to only having injections, bloods, cannulas all the fun stuff, done on my left arm so I knew he’d have to go into my hand again. He assured me he was “very good at it” and used a tiny baby one. It went in fine. They gave me some morphine and the pain began to be manageable.

Spence grabbed me some things into a bag, I was changed into a medical robe, we had an emotional goodbye and I was taken off to A&E at the RUH. As soon as we arrived, I shut my eyes when they wheeled me through just so I didn’t see anything too awful that would haunt me.

I was taken into a side room due to the chemo and lack of Neutrophils making me more vulnerable to infection. It was nice to be away from it all. A&E was busy.

On the occasion that the door was left open a bit I could see a very drunk man “Ken” who made me mad. Taking up a bed just because he was bloody wasted. Sad that he had to get in that state but also annoyed the hell out of me. When the nurses back was turned, I saw him swig something out of his rucksack. I pressed my alarm buzzer and took great pleasure in dobbing him into the nurses who gave him a proper bollocking and took it off him.

My temperature had risen to 38 in the ambulance. They weren’t happy with that so had started me on antibiotics. I did a urine sample, poked a bit by the doctor, bloods taken and a chest x-ray. The tests showed nothing other than the fact I was Neutropenic, which was not good. My Neutrophils should be at a 2. Mine were at 0.2.

I was wheeled around a side room in another ward, the Medical Assessment Ward MAU. Another doctor came to see me and poked me a bit. It was about 9pm by this point. He said there was no reason for me to stay and they can’t identify what is causing the pain. There was no bloody way I was going home until they did and boy am, I glad I stayed.

At 1am I woke up to go to the loo. On retuning to bed the pain started again and this was bad. I rang my buzzer and was told I wasn’t due any more painkillers for another two hours. As I led there the pain got worse, and worse and worse and worse. For two hours I led in bed and just shouted “FU******************K” as loud as I could. The poor old dears on the ward next to me must have wondered what the hell was going on! I tried everything to get through it, but nothing was helping. The nurses kept calling for a doctor, but one never came as they are so busy. At last count in the RUH there were 270 staff off due to COVID-19 or isolating.

After two hours I was given more painkillers and was out cold.

Sunday. More tests. More poking and no answers as to what was causing the pain. I had a nice pork roast and ice cream for lunch and a cheese and onion pasty for tea and was told I was not going home again. It was ok. The pain was manageable with pain killers. Saffron was at work on the Sunday and had very kindly come to my rescue with some nice nibbles and a hoodie for me to wear home.

But why did I need a hoodie when Spence packed me a bag of things to take with me? You might well ask. In Spences mad “supermarket sweep” style panic to send me off with a bag for hospital he had packed the following…. Three pairs of thick bed socks, two pairs of pants, three pairs of pyjamas and three bras! Neither of us thought to pack a top for me to go home in as I’d left the house in a medical robe and joggers! It did make me laugh when the nurse was looking through my bag and asked how long I thought I was staying!

Monday morning, I had a visit from someone in oncology to chat about the pain and see if it was chemo related. They decided it was not but was likely to be a kidney stone brought on from dehydration from the chemo. I broke my ribs a few years back and I tell you now, if that was a kidney stone it was at least 5-6 times worse than breaking my ribs. The pain is indescribable.

I had also said that I needed to have the Picc line removed as I wasn’t getting on with it at all and how much I hated it. They said I could have a port fitted in my chest instead and have the Picc removed. This was done very quickly by a LOVELY nurse and was painless. I was somewhat relieved but not at the thought of having a port fitted. Yet another person poking at me. Again!

It was 5pm and I was finally allowed to go home. Spence met me by the main reception. He gave me the biggest hug and I cried. I’d missed him so much. I just wanted to go home.

Christmas

Christmas eve, 8:45am I was back to the RUH to have the port fitted in my chest. It was only done under local which I assumed was because it was not that painful. Hmmmmm. It was very uncomfortable. Even though I was full of local anaesthetic I could feel pressure and poking and pulling and I could hear all the noises as they put it in to my neck and chest. I cried a lot during the 45-minute procedure.

It was a lot more painful for the rest of the day than I thought. I took painkillers and did my best to hide the pain from Spence so we could enjoy Christmas eve, or mainly, so he could. He deserved it and deserved the break.

Christmas Day, I dosed myself up on painkillers, pulled up my big girl paints yet again and tried to have the best day possible in the circumstances. And we did. I was totally and utterly spoilt rotten by everyone and had the most amazing presents. We had a late breakfast; Spence walked the dogs and then we tucked in to the most beautiful roast dinner with a HUGE thank you to Deb. Just washing up two plates and a gravy jug on xmas dinner is 100% the way forward? Same again next year Deb? We also had another beautiful roast provided by Spences step mum, Gail which we polished off on Sunday. Not having to cook and being able to relax for a few days before the zapping starts again has been nice. I saw mum, Gemma and Charlie from a distance. It was sad but nice to see them and when I think how it might impact me if I were to catch anything, I know it was the right thing to do.

My Hair

So it’s happening … My hair is starting to “Shed” which is the nice way of saying it’s falling out.

Even with cold capping I knew this might happen but there is no amount of preparation you can do. Day 14-21 is when its due to happen. Yesterday was day 17 for me. I combed my hair last night and noticed a lot more was coming out than usual. Today I was due one of the twice weekly hair washes I am allowed. I can’t shower fully yet, due to my port so Spence helps me wash my hair over the bath. After a very gentle wash my hands were covered in hair, it was running down the bath and was on everything I touched. I patted it dry with a towel and combed it through with a wide toothed comb. Even more came out. There were a lot of tears shed as well as hair.

Through one of the cold capping groups on Facebook I’ve met a lovely lady who is going through the same experience as me just one day ahead of me. We turn to each other for support and to ask each other for advice. Whilst I hate that anyone else is having to go through this, it’s great to have her there.

She started losing her hair a few days me and it shocked me. It’s been getting progressively more and more each day and its hard to see. To me, not knowing her well, I still think she looks fab and I don’t think you’d tell how much hair she had lost however I feel for her being so self-conscious about it. we all have enough hang-ups to have to have something like this thrown in the mix.

I don’t know how long the “shedding” lasts for as it so different for everyone but if it continues at the rate it did today for long, I won’t have much hair left if any.

I think about it all the time. I dream about waking up and all my hair being on the pillow. I touch my hair and a strand falls out and I try and I pick it off and throw it away. I find a hair on my clothes or the bed and go into a panic. I wake up anxious to know how much will come out the next day and the next. Its consuming me and all of my thoughts.

I have said to Spence, as much as I’d HATE to have to do it, if it gets too bad and starts to thin too much that there is no going back, I will make the decision to shave it all off. I know I will hate it but also wonder if it might give me some relief from the stress that it is causing me? My friend Sarah very bravely did this when she was having chemo and said it was a huge weight off of her mind. But she is stunning and totally pulled it off.

I have tried wigs and not yet found one that I like. Not to mention they are a HUGE amount of money for any that are even half decent. And what do I do with it afterwards?! Not sure there is much of a market for second-hand wigs? I also don’t know that I want the stress of wearing one and almost hiding away under it. I will know what I look like without it and I know I will look like someone who has cancer. I don’t want to look like I’m wearing a wig or it blowing off on a windy day or the dog running off with it!

I know I might joke about this, and in all fairness, I don’t know what else to do. I joke to you guys but I cry about it several times a day every day. It’s very distressing. To me its almost the worst part about the whole thing. If I could do chemo and not lose anymore of me, I’d kick its ass. But it feels like with each cycle its chipping away pieces of me and I’m beginning to find that very draining mentally and physically. Soon I can expect to lose my eyebrows and eyelashes as well.

I hate chemo and I hate cancer. I hate how it makes you feel and how it makes you look. I hate the days wasted in bed feeling sick or sleeping. Its feels like a waste of life to me when I could be doing so much. I even thought I might be able to work in between chemo but if this first round is anything to go on, that looks very unlikely. I hate what this is doing to my friends and family and I hate how Spence is missing out on things because of me being ill.

Hints and Tips – Things not to say to someone losing their hair:

  • Its only hair. It will grow back.
  • At least you have a pretty face and features to pull it off.
  • You can get some great wigs.
  • Well, I think you are beautiful hair or not.

Thank you

When I married Spence and said “in sickness and in health” not in a million years did I ever think it would mean this. At best I thought I’d be helping him through man flu or a tummy bug picked up on one of our classy holidays. He has been through so much and continues to go through the pain I am feeling every day. There are no words to describe how grateful I am to him and will always be. There is nothing that I can do to ever pay him back for how well he is looking after me.

I know for many of my friends and all of my family, this is crushing to see and may possibly get worse before it gets better. But I cant thank you enough for being there. Sending me stupid texts or photos, 30 second phone calls just to “Check in”, feeding Spence when I can’t cook or popping to the shops for me when you aren’t even going yourself. Saff proving medical advice 24/7 via test when im panicking! It’s the little things that mean so much right now.

I promise, when we are allowed, I’m throwing a HUGE party to thank you all for your kindness. Planning it in the middle of the night when I can’t sleep keeps me going and gives me something to look forward to. All we need now is for cancer and COVID to f*uk off and we can all get together again.

Hot Date for your Diaries

31st December – Chemo Round Two – Happy New Year!