Its been a long time, so its a long update.

I can’t believe that it has been 2 months since I last wrote an update for you all. I’d like to say that “time flies when you are having fun” but the reason for my lack of blogging has not been down to the amount of fun I’ve been having! Things have been truly shitty on an epic scale. To the point where so much has happened that I don’t know where to start with it all. So, if you like, stick with me and I’ll skim over the really “fun” bits for you.

Chemo – Round 2

“So, does it get easier each time you have it?” short answer “NO” it’s as horrendous as the first time. The only difference this time is that you know roughly what to expect and how long the side effects will last. Or so I thought!

Chemo took place on New Year’s Eve. Happy New Year to me! I stayed in bed until Monday as per usual and got up only to go to the loo and sat up to eat baby spoonsful of food. I was so weak and felt truly awful. This was by far the darkest chemo for me. I cried a LOT about how weak and pathetic I was feeling and why was I not one of those people you see on TV who have chemo then go to work a few days later. That bloody Victoria Derbyshire has a lot to answer for! There was me thinking I’d be skipping through the fields on dog walks and working in between, when actually I couldn’t even walk up the stairs or sit on the sofa and watch tv without crying, feeling sick, needing the loo or having to sleep from the fatigue.

I thought about death a lot. Not just mine but everyone who I love. I thought about my place in the world and what was the point in it all. It’s hard thoughts to have at the best of time, let alone when you are feeling so sorry for yourself. I called on my psychiatrist to help me understand all these feelings and he is AMAZING! There needs to be one of him on call for every single person going through cancer or not. I have no shame in looking for help when I need it and I needed it. The world had become a very dark place for me, and I needed someone to drag me up out of my pit. As I began to feel better, these feelings were not so daily which was a huge relief.

Nurse Spencer

Due to covid, the district nurses who come to the house to give me the injections required on day 5 after chemo were limiting interactions with people, so they had asked if I’d try and administer the injections that I needed to have, to myself. “No bloody way” but luckily Nurse Spencer happily obliged. (The injections go in your stomach and are to help get your white blood cell count back to normal after being obliterated from the chemo drugs)

The district nurse came to the house on Monday. Spence eagerly watched on as she showed him what to do. I could see that although a bit nervous, he was looking forward to this. I was worried that it was going to be like a scene from Pulp Fiction and he was going to come running across the room and stab this bloody great needle straight in me. I shut my eyes and squeezed the bed sheet tightly so that I didn’t thrash out and punch him. He was amazing and took instruction from the nurse very well. I actually didn’t feel a thing. Only another 4 more days of this to go.

The following Thursday night I was still not feeling right. This didn’t feel like the last chemo, this was taking me a lot longer to get over and I was as weak as a kitten. I had an odd pain under my right arm, it was a burning pain that no amount of paracetamol was getting rid of. Thinking that it was “Just another side effect” I tried to get on with recovering thinking that it would go away. It didn’t. By Saturday night I was in absolute agony. By now the pain was in both armpits and small red lumps the size of peas had appeared. I couldn’t sit with my arms by my side, I couldn’t lift them away from my body, I was so uncomfortable. It felt like there were open wounds under my arms. I rang the 24-hour chemo line who were baffled and advised I rang 111. I waited for 3 hours for someone to call me back with some advice. It was 11:30pm and Spence and I had just got in to bed when someone called back. I was asked to go to the Treatment Centre in Shepton to see a doctor. He was one of the nicest doctor’s I’d ever met but had NO idea what it could be. He gave me some antibiotics (because I told him that’s what they had done in the past when I’d had an infection) and sent me on my way. I got home and took some morphine I had left over from my last stay in hospital and managed to get through the rest of the night.

In the morning I was in agony once again and had a temperature of 38. That always rings alarm bells and is a sign something isn’t right. I rang then chemo line and they told me again to ring 111. They called me back quickly this time and said I needed to go straight to A&E. They offered to call me an ambulance, but we could get to Bath ourselves a lot faster and I didn’t want to waste the time of an ambulance crew. I rang mum and Gem to let them know what was happening and then I just cried and cried. I couldn’t believe that this was happening again. The doctor who I spoke to was calling ahead so that when I got there I could be seen straight away and didn’t have to wait to go through to the Medical Assessment Unit (MAU) I was getting the special treatment!

We packed an overnight bag. This time being two of us and not being quite so panicked by it all I was a bit more prepared about what to take.

As we arrived in Bath, I was a blubbering mess. Having to go into hospital again, and again on my own was tough, especially having no idea what on earth was wrong with me. Spence gave me a huge hug and a kiss, and with my tear-soaked mask, I walked into A&E alone. I approached the reception window and slid them the little “Chemo care card” I have to carry with me. “It’s ok sweetheart don’t cry, we knew you were coming. Come with us and we will take you though” The receptionist left her desk and walked in front of me to the MAU unit where I was back in the same side room, I’d found myself in, only about a month before. “The loo in here is broken so if you need to go, we will have to bring you the commode” Great! I felt about 80 years old at this point.

A nurse came in to canulate me “I think that’s in” he said. Did not fill me with confidence and didn’t feel like it was in to be honest, but I thought I’d give him the benefit of the doubt and avoid any further prodding at this point. Bloods and a urine samples were taken, I was given some painkillers and then I was left alone until the results came back and there was a doctor able to see me.

About an hour later the doctor arrived. The good news was that my white blood cell count was back to normal and I was not neutropenic. The bad news was that meant I could go on to a normal ward with the common folk! I would have to leave the luxury of my own private room and sit in a bed surrounded by ill people. This filled me with fear. They also said there were signs of an infection and were getting me on some IV antibiotics straight away. What the infection was, was still yet to be determined.

I was wheeled out to bed 21. To my right was an empty bed and to my left was Pat. Pat was a partially deaf, jolly, funny, 91-year-old lady from Shepton who had been brought in with some issues with her heart. But if you ask her, she had no idea what all the fuss was about and just wanted to get home.

Opposite was Karen. Karen was 54 and also in with issues with her heart. The other two beds on her side were empty but not for long. I did not like people staring at me and the awkward smiles so asked for my curtains to be closed. It was very antisocial I know but at least it meant I could just get my head down and get some sleep. NOPE! that does not happen on a ward. It is so loud and there is so much coming and going that in the end I gave in, opened the curtains, and did some people watching.

MAU is where all patients go from A&E while they decide where to put you or wait for your bed. No one is really supposed to be there for long. It is a bit like the departure lounge at an airport but with shittier destinations on the other side.

It was not long before all the beds were filling up. And filling up fast with old ladies. Most of them had no idea what was happening, why they were there, when could they get a cup of tea, what about the cat? had someone phoned their sons and daughters? It was really sad to see and again brought back thoughts of my own life and death. I did not want to be any of those old ladies. I messaged Jaz who agreed that if I get too old and senile that she would oblige to wheel me off a cliff. I was in agreement this would be better for me.

Pat, Karen, and I did have to laugh at one old lady. Despite being small and frail she had the potty mouth of a dockyard worker. She was constantly calling the nurses “bloody bastards” all the time, every time they tried to help her and would sometimes throw in the odd right hook for good measure. This would have had no more impact on the nurses than a puppy patting them on the arm but did make what they were trying to do a whole lot harder. It really does take a certain kind of person to be a nurse. They were amazing with her despite the torrent of abuse they got each time.

Being it was a Sunday that I got admitted I knew I was there for the night until I could see someone from oncology the next morning. I changed in to my sexy, backless, hospital gown, enjoyed my OAP portion of roast pork, had my Mr Kipling apple pie for pud, asked the nurse to dose me up on painkillers and settled down for the evening. As much as was possible with all the Hussle and bustle and constant noise of commodes being dragged around all night.

Covid

The following morning, now Monday, I was seen by a doctor. He told me I had had to stay in on IV antibiotics until they had seen some improvement in the infection markers in my bloods. I was still in a lot of pain and nothing had seemed to have helped the lumps go down. They were baffled as to why I had this pain under my arms and what the lumps were. They kept telling me it was my nodes but seeing as I’d had them all removed on my right side, I found that hard to believe. It worried me. Was it cancer coming back? Was it because I had no lymph nodes to fight anything off? Surely someone would know. Maybe it was just some weird chemo side effect that no one had had before? A nurse from oncology came to see me. This was not a side effect. She also had no idea what it was or what the lumps were but did tell me it was highly unlikely that it was cancer as it was symmetrical and painful. That was a bit of relief but still no closer to getting to the bottom of what it was and why it was there.

Throughout the day, more people were moved on and off the ward but Pat, Myself and Karen all remined in our same spots. This was our turf now and we joked with the nurses that we should be allowed to vet who came in and who stayed as we were in this for the long run. We did not want anyone who was too chatty or too noisy, as it would disrupt our routine.

Later that day a very disorientated lady came in and was put in the corner bed next to Karen, opposite Pat. She was out of it. lots of people came to see her and check on her and work out where she would need to go next. There was a lot of fuss for her and trying to get any sense out of her was proving to be very hard.

Then we heard it “my son is in here with covid” Karen and I looked at each other in disbelief. The curtains were drawn around her bed and a flurry of activity started. “oh shit” I put on my mask. We did not need to wear them when we were sat in our beds, but I did just as I had no idea what else to do. This lady had a son with covid and was in a bed only a few metres away from me.

After about an hour of LOTS of comings and goings the elderly lady was wheeled off the ward. I asked the nurse what was going on. “That ladies tested positive for covid. She has been caring for her son who is now in here with it. We are taking her off the ward and shutting it down. You will all need to be moved out” oh. I won’t lie. I was really scared. I had come in with an infection and had now been in quite close proximity to a lady who has tested positive for covid.

Midnight Picnics

At this point there was now just Pat, Karen, and me on the ward again. We would spend most of the day chatting and had a good relationship. Pat would need us to keep her in the loop with what was going on as she couldn’t hear that well and Karen and I would help her call her sons to keep them up to date. I literally had no idea how to use the old mobile phone that she had so would message them for her, from mine. She would insist on paying me for the calls and texts and did not want to use up all my credit. Bless her, it was hard to explain how phones didn’t work like that these days and I could send as many messages as I liked. Even though, she insisted on giving me £1 for my trouble.

Not long after the lady with covid was moved off the ward in came a team of specialist cleaners. Hats off to them, they did nothing short of a miracle in cleaning out the cubicle she had been in. EVERYTHING and I mean EVERYTHING, was cleaned and if it was disposable, it was thrown out. Even the curtains on the windows next to her. They did an amazing job. Watching them filled us with a bit of confidence and kept us entertained for an hour or so.

“You back here again?” One of the Health care assistants who looked after me last time, Lisa, was back on shift and had recognised me. She was nice. Talked too much for my liking but it was good to see someone I vaguely knew. She had come to take my order for dinner. When you are in hospital the only thing that really breaks up the days are your regular observations being taken, your meals and the med round so having to choose what to eat is a real treat. The meals are what I’d describe as quote “traditional”, but they are really not that bad. I have not had a bad meal in hospital yet. Not what I’d choose from a menu usually, but options are limited. 9 times out of 10 you get a pudding too so that is a bonus. Pat, Karen, and I debated who was going to have what, who liked what types of food etc and then placed our orders. I had chicken casserole, crispy potatoes and veg. Pudding was apple sponge and custard. I am not sure I had any chicken, but it was still tasty and satisfied the small appetite that I had.

When Lisa came back to collect my plate, I tapped her up for some insider info on what was happening to us and the ward. MAU had been shut down for the night. No one was coming in or going out. They were taking advice as and when there were updates from the special Covid team that had been established in the hospital. “So, it’s just you three here for the night” This was great news! We were all chuffed to bits to hear this. There was us three patients, Lisa, our nurse Sally and another nurse.

The evening was so quiet that the nurses all said they had no idea what to do with themselves. We were all classed as “independent” so required very little looking after, much to their disappointment. Karen and Pat would often go to the loo without taking their heart monitors off properly so regularly appeared to have Flatlined and died, but other than that, we caused very little work for any of them. So much so they’d come and offer to make us tea and toast just for something to do.

Karen’s daughter lived very close to the RUH so had been in and dropped her off a bag of goodies. Biscuits, fruit, crisps and sweets. She shared these with all of us and we sat in our beds and chatted and giggled like little children on a school camp who were supposed to go to sleep but wouldn’t. The nurses even came in with a radio for us to have on.

It was getting late, and Pat announced that it was her birthday in a few days. Off Sally went and came back with slices of prepacked chocolate cake for us all and cups of tea. It was so lovely (not the cake), and Pat was chuffed to bits with the effort. We had yet another cup of tea, a shot of good old morphine and then it was time to get some sleep.

Covid. Again!

Tuesday morning the whole of the MAU ward need to be deep cleaned so we needed to be moved out. Karen was wheeled off first and was taken to the cardiac unit. I went next and was taken to Medical Short Stay. It was sad to leave Pat behind but knew she would be moved somewhere else soon too. We all swapped numbers to keep in touch on any Covid updates, but I was not holding out much hope on Pat being able to text.

Luckily, I was taken to a side room once again so avoided having to be on a ward. Although it had not been as bad as I had thought, I now had my own room again, own bathroom and quite a nice view out of the window. It was quiet and I could get some sleep! There was even a TV, but I didn’t fancy watching anything.

Once again, I was seen by a doctor on his rounds but no idea what was wrong with me. More bloods and a chest x ray were done but showed nothing other than high infection markers. More visits from oncology to examine me but this time from different teams. Still all baffled as to what the lumps were and why I had so much pain. I was now regularly on very strong painkillers so quite out of it most of the time. It was the best way to be honest and all the sleeping helped pass a lot of time just sat around doing nothing but worrying what was wrong with me.

I face-timed people when I felt like it to keep them up to date on what was going on and rang mum as and when there was news on anything. Spence was at home holding the fort and doing an amazing job. I face-timed him and he looked so sad. He cried and it broke my heart. Spence NEVER cries so things must have really been getting to him. He was worried that I was in hospital, that no one knew why, and that there was nothing he was able to do to help. He couldn’t come and visit so was powerless and felt useless. It was very hard for me to see. I had absolutely no idea but promised him there was nothing to worry about and I would be home soon.

Saff had become my own personal nurse on call. She knew the RUH, she knew the people, she knew all about the tests they were doing on me and was there any time I needed to call on her to ask what something meant or why they were doing this and that. She was not at work at the time but promised to come and see me when she was next on shift. She always manages to make me laugh and tells me how well I’m doing, despite the fact I felt like I was falling apart and no better at all. It has been incredibly reassuring having someone who is medical to be able to talk to.

Tuesday came and went and before I knew it, it was Wednesday. I had now been in hospital for 3 days. The pain was under control, but the infection was not. At 6:30am the nurse came and gave me my meds and did my observations. At 7am I had breakfast and went back to sleep. When I woke at midday the whole place had gone weirdly quiet. There was no one around. This was weird. Had a missed something? Maybe they had forgotten I was in the side room or maybe they were just leaving me too it? I rang my buzzer and waited. 30 minutes passed and nothing. I rang again. Nothing. I rang again. A healthcare assistant came in “you ok?” “just wondering where everyone is as no one has been to check on me and I’ve not seen a doctor yet this morning” “we have a confirmed case of covid on the ward. The whole ward must be shut down, people moved out and the ward cleaned. Most of the doctors have been exposed so have had to be sent home to isolate. Its unlikely you will get to see someone today” oh bloody great. This meant YET another night in hospital. I was gutted. I just wanted to get home now; I had had enough.

Later that day I did finally get a visit from a doctor. An ear doctor! I can’t remember what it said exactly on his badge as it was such a fleeting visit, I barely had time to talk to him. I’m guessing he had literally been roped in to quickly check on people to make sure that they’d not died or were not likely too then could get back to his own ward. The RUH was stretched. Staff were off left, right and centre and everyone was doing all they could to hold the fort. You could tell how busy they all were and how much pressure they were under with Covid looming over everyone.

I didn’t need much while I was there other than my regular pain meds and food, so left them to it. I hardly saw anyone all day as they rushed around moving everyone off the ward. As I was in a side room, luckily, I could stay where I was so that was a relief. Had I been on a ward at this point I would have had enough and discharged myself! I rang everyone to tell them it was yet another night in hospital for me.

Back to the Breast Unit

It was now Friday. Things had calmed a bit on the ward by now and there were a few more people around checking on me. After breakfast a doctor came in to see me “we need to run some more blood tests on you. We are going to check for HIV, bla bla bla bla bla and bla” “HIV? What the hell?” Honest to god the only words that I heard come out of that doctor’s mouth was “HIV HIV HIV” I was in complete shock and panic. “I don’t have HIV. Do I?” He did and said nothing to reassure me that this was not the case. Even though I knew that 100% I didn’t, I got straight on to the internet and googled Have I got HIV? How do you get HIV? Symptoms of HIV etc etc etc the list went on. Any funnily enough I had all the symptoms! Oh shit. This was adding a very interesting, worrying twist to the whole tale. The sooner those bloods came back the better. It was going to take 3 days. I couldn’t wait that long but had no choice. I sat in bed and worried, to top it all off, I now had HIV as well as breast cancer.

It had been decided that I should be sent back to the breast unit to have an ultrasound on the lumps, and this filled me with fear. The last time I had an ultrasound I had cancer. I didn’t want to go.

A porter wheeled me down in my gown and a blanket looking very sorry for myself and parked me up in the waiting room. Karen, one of the breast care nurses came to sit with me and chat while I waited then I was called through. The tears started.

“Hi Amy. I’ve seen you, before haven’t I?” Yep, she had. This was the lady who first told me I had breast cancer. I was still crying. I was completely terrified as to what they would find. I led back starring at the ceiling with one of the nurses holding my hand and she began to do the ultrasound. The lumps were still very painful so her pressing on them didn’t help and made me cry even more. I squeezed one of the nurse’s hand as she tried to comfort. The room was silent. I looked at the monitor. I could see the lumps as she rolled over them and I could see some other things too “what are they?” “Those are some nodes. They must have been left behind after the clearance and they are showing as being inflamed as they are trying to fight off this infection” So that was good news. Those things were just nodes. “and what about the lumps under my arms?” “I’m just going to get Nicky for a second opinion” She was calling in the big guns. This worried me.

Nicky was the surgeon who’s care I’d been under the whole time through my diagnosis and who had done my mastectomy. I’d not seen her since October. “Hi Amy. Sorry you are back here having to go through all this. Boob looks fab by the way” It was great to see her, and her boob comment made me laugh.

Both Nicky and the ultrasound lady examined the screen some more. Nicky also agreed that some of the areas were nodes but was unsure on the lumps. “I suggest we carry out a biopsy just to be on the safe side” The last biopsy I had on my boob was so painful I could only begin to imagine how that was going to feel having it done under my armpit. I cried at the thought and the nurse tried to comfort me. They chatted amongst themselves as to what tests they needed to run and if they could rush them through to get the results asap. Luckily, I only needed a “small needle biopsy” so it was uncomfortable but not as painful as I’d thought. I think the huge number of painkillers already in my system helped a lot! Nicky gave me an awkward smile and left.

“Amy can you see this?” The lady who had done the ultrasound showed me what they had “extracted” it was puss. “This is a good sign. Listen to the tone of my voice. Can you tell how different it is to when I last told you news. This is promising” The fact that it was puss meant these weird lumps that had appeared were likely to be abscesses. Still not great but looking less and less like cancer. I was soooooooo relieved I can’t begin to explain to you. The samples were sent off and I was wheeled back to my room to gather my thoughts and reflect on what had happened.

It was lunch time and even though I’d missed the slot, one of the health care assistants went down to the kitchen to get me something to eat. It was battered fish, chips and peas and brightened my day. I fell asleep. I awoke to a doctor coming into my room “good news, we can send you home” Thank god for that! I’d had enough tests and poking and prodding to last a lifetime and I just needed to be home now. 3pm Spence came to collect me, and I was over the moon to see him and to finally be getting out of hospital unscathed and having managed to avoid getting covid!

6pm my phone rang from an unknown number. It was Nicky “The cells aren’t cancerous. I wanted to let you know before the weekend, so you don’t have to keep worrying” I cried with relief. It was amazing news. Still didn’t know if I had HIV but at least for now, I didn’t have cancer.

Chemo Round 3

Wow! This is really going on isn’t it? Who knew there was so much to fill you all in on? I’ll keep this brief. Round 3. Horrific, as bad as one and two but luckily managed to avoid any stays in hospital. debilitating, 5 days in bed and another 14 of feeling completely weak from it all. Constant nausea for 3 weeks, diarrhoea, fatigue, constant hair loss, dry skin, mouth ulcers, depression, headaches, lack of taste and appetite, lots and lots of tears. you name it. I had it.

I was VERY closely monitored this time around and had calls twice a week from the oncology team to check in on me and monitor ALL the side effects. ANY sign of anything untoward and the wanted me in ASAP.

Round 4 has been a different drug and was always planned to be. I’d had 3 rounds of the FEC and now this was the “T”. According to Professor Beresford this drug is “a lot kinder” well that was bollocks. It’s been just as awful but with the added fun of crippling bone pain and debilitating diarrhoea resulting in me narrowly dodging yet another trip to hospital from dehydration.

Everyone had their fingers and toes crossed that I’d sail through this but I’m not. As I write this, on my fourth attempt, I’m day 12 after round four and feeling grim. I’ve just got back from the doctors after having to go for bloods to check my infection markers, kidney function and god knows what else.

The Hardest Decision of My Life

I think its clear to tell by now that chemo hits me incredibly hard. Some people manage to carry on with their lives and even work but not me. Chemo hates me as much as I hate everything about and everything it’s done to me. It doesn’t hold back. As much as it does its job of trying to kill the bad cells, its killing all the good cells in me too. It strips me back to nothing and my body must do its best to recover. I’ve had enough.

There has been, for some time, talk of getting me to round 4 and then stopping the chemo due to the way I’ve reacted to it, or it’s reacted to me. There is evidence to show that 4 sessions are as good as 6 but this is all just stats, and no one can ever 100% give you a definitive answer on what is the right or wrong thing to do and when is the right time to stop. Chemo has diminishing results over time meaning there comes a point when there is only so much it can do anyway and the effectiveness begin to lessen and the damage it does to the body long-term, outweighs the benefits it’s supposed to be giving. It’s just that no one really knows when this golden cut off point is. As the cancer has been removed, there isn’t a test in the world that is sophisticated enough to know if all the cancer cells that “might” have been left behind are gone.

The decision I now must make is do I stop chemo?

Professor Beresford, who is world leading when it comes to oncology, has never at any point said to me “you can’t stop” and it was him originally who said that four is enough. If he thought I HAD to carry on, and it was a matter of life or death, he has said he would tell me. All he can say is that EVERY tiny bit of chemo that he can give me would be “of some” benefit.

I’ve had several chats with breast care nurses, the oncology team, the professor who’s care I am under as well as Macmillan nurses, councillors and friends and family but ultimately the answers are the same and the decision on what to do is mine. All they can do is offer me advice and stats and give me all the info on the table.

After having chemo, the benefit that the “stats” tell me I should have gained, from 6 sessions, is between 12-14%. This does not mean that there is still between an 88-86% chance that the cancer will come back, it means that I’m 12-14% better off at preventing a reoccurrence than if I’d done nothing. Radiotherapy adds on roughly the same amount of benefit again, and the tablets I take after for 5 years, another 10% again. So, a total benefit from all these treatments of roughly 40%. But this is all just stats on a computer system used called “Predict”. My age, cancer stage and grade, lifestyle and other factors are typed into a programme which then spits out this figure based on 100 other people who have my circumstances. There is no definitive answer or exact science to any of this. I could have all this treatment and it could still come back. I could have none of this and it could never come back. There is no way of knowing. Ultimately my cancer has been removed and all of this is just the “insurance policy”.

Cumulatively that % benefit from all the treatment does not sound too disappointing but I was AMAZED at these figures and shocked at how low the % is from chemo considering what you have to go through. It hardly seems worth it at all. Feeling this ill for this long, losing so much of me and my life just for a few %. It’s something I think about ALL the time.

Basically, the long and short of it is that if I don’t have the last two sessions of chemo I’ll be losing about 4% benefit overall and I need to decide if I’m prepared to take that risk.

So here are the options…

Option A – Have the last two sessions of chemo.

Feel awful for another 2-3 months.
Lose my remaining hair, my eyelashes, my eyebrows.
Struggle with my mental health and fighting with depression.
Spend months feeling sick and dodging being admitted to hospital.
Miss lockdown ending and the possibility of seeing friends and family.
Miss the summer and be off work for even longer than I’d ever anticipated.
Spence being off work having to look after me and struggling to catch up as well as losing income.
Having to have my port in for months longer pulling on my neck and rubbing on my clothes every time I move.
Injections, tests, bloods.

Option B – Stop chemo now having had four rounds.

Lose roughly a 3-4% benefit from the last two sessions.
Start to slowly get my life back. To get me back.
Start to look like me when I look in the mirror and not the pale, sick cancer patient I have become.
Be able to enjoy the summer and see friends without fear of catching something and ending up in hospital.
Go on walks and get my strength back after being so weak for so long.
Going for meals with Spence and getting our lives and relationship back on track as the newly weds we should be.
Hug my mum and my sister and spend time playing with my nephew.
Be able to shower and wash my hair on my own.
Be able to leave the house without fear of not being near a loo.
Be able to contribute to the house as a wife and not have to rely on Spence to do everything all the time.
Be able to have a day go by where I don’t think about the next treatment and feeling sick at the thought of how I might react.
See my friend’s babies that have been born during lockdown.
Have a BBQ in the garden?
Get out and enjoy the motorhome that Spence and I so loving restored but did not get to enjoy enough.
Sit in the sun and relax.
Have a well needed holiday if and when allowed.
Get through radiotherapy knowing that will be the end of my treatment for hopefully, years to come.

Jaz said to me today when discussing this with her “look at it this way. You could have two more rounds of chemo and on your last one, walk out of the hospital and get hit by an ambulance and you have been through all this pain and suffering for nothing. Why prolong the misery? You need to live your life now and not worry about what “could” happen. IF the cancer comes back it could be down to a number of factors that are completely out of your control” I think she might be right.

People do stop chemo early. I have been reading about it and talking about it a lot. There are people who just can’t handle it, like people who just can’t take penicillin. Some can handle it and some cant. Unfortunately, I am in the group that can’t.

Whilst I might sound like ive made up my mind on what to do, I haven’t. I cant. Writing this all down and seeing the pros and cons in black and white has help me to process the options even more. I just need to know that I will have to live with this decision for the rest of my life as well as understand that IF the cancer comes back it won’t be my fault. My decision to stop chemo won’t be to blame. I am not to blame, like I’m not to blame that I got it in the first place. One in two people will get cancer in their lifetime, one in eight women will get breast cancer. There is no great plan in place for me and nothing is being sent to test me or make me stronger. It’s just been one of those things. Really, truly shitty, but just totally and utterly out of my control.

I have a meeting with oncology again on the 8^th of March, until then, I need to keep thinking about what to do and make a decision that I have to live with for the rest of my life

Love you all xxx