May Contain Nuts

It does exactly what it says on the tin

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    • Saturday 4th October  

      I went out to breakfast this morning with some of the lovely women I work with, and they had invited along our recently retired boss, Katharine. The first thing she said to me was – should you be out? I just replied with – of course I am Mum, I’m fine! But that got me thinking. Do people think I’m supposed to sit at home and hide? 

      I have some amazing friends who have always been there for me over the years, but since my diagnosis, I just haven’t seen them. Why haven’t I seen them? What is it that I’ve done that makes them feel that they must stay away? People message and say, let me know when you want to meet for a coffee. How am I supposed to know when they are free for a coffee? I sit at home, all day, every day, going nowhere. They are the ones who have busy lives with their jobs and their families. 

      It’s a sad but true thing that I have seen my physiotherapist more times since my diagnosis than I have some of my friends. I must say though, my physiotherapist has done an amazing job of helping fix my rotator cuff injury! 

      So why have my friends been avoiding me? Is it easier for them to stay away due to the guilt they have about being fit and well whilst I am going through treatment? Do they think I have to live in a germ-free bubble where the outside world is not allowed to get anywhere near me? Or is it that age old thing of everyone being so bloody polite that they are waiting for me to message them to ask them to come over? Because, if that’s the case, I would be messaging them every single day of the week. 

      I’m bored. I’m lonely. I don’t want to sit and read books every day or watch tv. I’m becoming disinterested in doing anything, because, what’s the point when no-one wants to see you. Why get dressed? Why do anything? 

      Yet going out this morning has made me realise that I’m still me. I sat with a group of women who talked about work, and they made me laugh, and they made me feel that I am still alive. I listened to the gossip, the dramas that had happened, the things that were happening in their lives. They didn’t ask me about how the treatment was going; they were too busy filling me in on everything I had missed since the last time we got together. 

      On Monday I am going to have lunch with another couple of friends, because they messaged and asked if I was free. Of course I’m free. If I don’t feel well enough to go, I will have to cancel. But I have been well, and that’s what has been affecting me the most. In fact, I have been doing so well on some weeks, I have been just logging on to everything at work and trying to keep myself occupied with that. Who does that? Someone who’s bored, that’s who does that. 

      And it’s not just my friends; it’s my family as well. I feel like they now see me as something that just hangs around the house. Simon took me out to lunch, once. We went out to dinner as a family, once. I paid for us all to go away as a family for the weekend, and it felt like something normal as we went to out and did things together. But do I have to keep paying for weekends away just to get that feeling again? I have two working children who haven’t taken me out. Some days I feel like the only thing I am needed for is to be a taxi service for Emily. Hannah would rather go for days out with Tom. There is no thought in that child’s head to do something with me. 

      So, if my own family don’t want to do things with me, is it any wonder that my friends don’t want to do anything with me either. Do they all think I am too fragile to do anything? Or are they all just getting on with their lives and thinking I am happy to be the person that life forgot? Is this the superpower that chemotherapy gives you; the ability to be completely alive in the world yet completely invisible to everyone at the exact same time. 

    • Round 3 Big Chemo Day Thursday 4th September 

      I’ve been good this week and had made sure that I had been keeping up with my fluid intact. 

      The district nurse came out yesterday to take my bloods. She was going to do a picc line dressing change, but I told her not to worry about it as the hospital will do it tomorrow before my chemo. The nurse seemed such a nice lady. Weirdly, she had to wear a mask as I am classed as vulnerable. I guess she has been seeing other patients before me. 

      Woke up in plenty of time, had my usual bath, and got my bag ready for a long day at the hospital. Lower back started hurting last night and hasn’t gone away this morning. I hope it’s not my kidneys. 

      Got to the chemo unit, only had to wait half an hour to go through. Told Lauren that ny back was hurting and I was worried about my kidney function. She came back and said that my bloods were fine, then she offered me paracetamol for the pain, but I requested a pillow instead and used that to support my lower back. It’s been fine since, but that might be the steroids that are helping it. Who knows. 

      I was in Bay 4 again today. 4 women, 2 men. The man next to me was there having his first round of chemotherapy. He said that he went to the doctors as he was getting a little bit out of breath when walking up a hill, so he was sent for tests, and they found he has lung cancer. He was having the same drugs as me, chemo and immunotherapy, so we were having a race with our meds during the day. Of course, I beat him as my picc line gets everything in faster. And I also had the cold cap on for an extra hour and a half! 

      The other man that was in with us was a snorer. He kept nodding off to sleep and throughout the day. When he was leaving at the end of his treatment, he apologised to everyone about his loud snores! I thought that was quite sweet of him as he could’ve just walked away and not said anything. 

      There was an Asian lady who was also having her first round of chemotherapy, but she was struggling with it throughout the day. She didn’t eat any lunch and slept through most of it. When she was waking up towards the end and was having her canula removed, they had to pull the curtain around her so she could be sick in one of the bowls. They had to give her the emergency sickness pill that I have but haven’t needed to use yet. At least I know now when I should use it and how. 

      I was finished by 4:15pm so Simon came to pick me up. I was feeling pretty good when I got home, but I was making quite a few weird mistakes. I kept dropping things and somehow managed to slide my watch off my bedside table and Simon had to drag the table away from the wall to reach my trapped watch. I forgot to bring my water upstairs with me, and I’m sure there were other things as well. The strong antihistamines really do make me feel like I’m not in my own body. They make me sleepy and slurry, then the steroids get into your system and you’re wide awake again yet shattered. Plus, I know I will have a bad night’s sleep, but the magnesium spray stops the restless legs, I just wake up at weird o’clock and listen to podcasts. I would read my book, but I don’t want to turn the light on and wake up Simon as he is on the early shift. 

      We always have Thursday as take-away night, but I’m now getting bored of it. It was curry this week, which was nice, but there was just too much of it for me and Simon will then leave all the leftovers for me.  

      Oh well, curry for lunch and dinner tomorrow then. 

    • Tuesday 2nd September 

      It’s back to school day. 

      I’m at home whilst James and Nicola are having to cope with all the new Year 7s without me. I feel lost. 

      I feel like a fraud as I could be in work doing what I should be doing. But I know that will all change by Thursday. I should just relax and read a book or watch some tv. I’m not. I am currently checking my work emails, Go4Schools and MyConcern to see what I can to help me get to know the new students. I’ve also been sorting through old emails and documents and getting rid of anything I don’t need. 

      Hannah has taken Emily to work and then she’s off to the gym. She put a wash on before she left so I’ll put that out for her. Then I’ll put a couple of our washes on after that. I washed all the towels yesterday, and I was hoping to do the bedding, but Hannah put a wash on. Plus, I need someone to help me get out bedding off … but I might just try to do it one handed! 

      I’ve been forced to keep looking at myself in the mirror as I need to keep an eye on any marks or bruises that appear. What I have noticed is the puckering on my right breast has now gone. I did wonder how long it would take for the cancer to start shrinking, and I have been checking my boobs at the start of every month, so I feel relieved to know that the treatment is most definitely working. 

      I’m getting bored of water again. This happened after Day 15 on the first round. I need to keep making sure I drink; I don’t want to be told off again by the chemo nurses. 

      We went out to dinner as a family this evening. It felt weird and nice, all at the same time. Thankfully the restaurant was quite empty at 6pm so we weren’t too near anyone, but I wasn’t too bothered about that. We had starters and mains, and I made sure I went for the smaller dishes. But I was still really bloated when we finished. It made for an uncomfortable evening. So, I must remember to not try to eat everything, it’s not good for me.

    • Friday 29th August 

      Woke up at 2:35am. Tried to get back to sleep again but my luck was gone. Sprayed my legs with magnesium to help them but sleep still wouldn’t arrive, So, I listened to podcast after podcast, in the dark with my headphones in. Gave up at 8am and got up. I have huge bags under my eyes, but I can’t do much about that. 

      Went out to breakfast with Jo, Faye, Kim, Andrea and Nicky. It seemed weird to hear them talking about getting ready for work again. I wish I was too. I’m a quarter of the way through so only 18 more weeks of chemo to go. It seems like a long time, and yet the past 6 weeks have just flown by.  

      I miss my old life. I miss not being able to do all the stuff I usually do. But this is just a small blip in my life. I need to get my knitting needles or crochet hooks out and start making something. I’ll make it productive, so I have things to look at and know I did something useful and not just keep binge-watching great tv shows! I’m watching The Lincoln Lawyer today; at the start of the week, I watched the first season of Wednesday. Once I start watching, I can’t stop. It’s affecting my step count! 

      I’m hoping to get a better night’s sleep tonight. Fingers crossed. 

    • Day 15 Chemo Day Thursday 28th August 

      Now, what has happened this week? The family gradually got better. I was wearing a mask around the house when they were home, but they were good at staying away from me. 

      All the gang went out for drinks in London on Saturday and they sent me pictures of what they were up to, and a got sent a funny video of them in the disco toilets! I missed being there, but I was delighted to be kept involved. It lovely knowing they are thinking of me when they are out. 

      Nicola called me on Saturday to see how I was. She’s always doing regular check-ins with me, she doesn’t need to, but she does. She was off to the Notting Hill carnival on Sunday, and she is another one who sends me pictures and keeps me updated.  

      James popped in on Tuesday for a catch-up. I’m still unsure how it got to be that time already when everyone is getting ready to go back to work. I will be missing so much. I won’t get to know the kids or be part of the fun packed days. I know the students will cope fine. They won’t miss me, as they don’t know me. My main fear is the amount of work James will be expected to do. Attendance can do that part of my job but dealing with the MyConcerns that get uploaded by the teachers is a mammoth task. The only thing I can do from home is to just keep myself updated with everything on MyConcern and Go4Schools and keep reading any of the emails that are sent my way. But there will be an awful lot that I won’t see or even be part of, and my main job is to know everything! It’ll be tough, but I must stay home and keep safe and concentrate on getting better quickly. James looked well, married life is agreeing with him. I miss my work son. 

      On Wednesday, I went to lunch with Liz and Nicky. I hadn’t seen them since the day they came over to babysit me. It was joyous spending time with them, and laughs were had. We even popped to see the house Liz has her eye on. John Edwards called in the afternoon to check in and see how I was doing too. 

      Thursday was a day of just waiting around. It was my first afternoon booking so I couldn’t go anywhere in the morning or get involved in anything big as we would need to leave at 1pm. Got to the hospital, sat in the waiting room and didn’t get taken round until 2:30pm. There was a lady sitting next to me on the bank of seats and I recognised her but wasn’t sure where from. After I was getting settled and having the drips attached to me, the lady from the waiting room came round to see me. It was Sarah’s mum! She has been having weekly chemo sessions as well, but I remember Sarah saying that she was always booked on for the afternoon slots. I must try and look out for her again as next week I will be there until 5ish as it the big one again. 

      Whilst talking with the nurse, Tracey, it then turned out that not only did she go to school with Julie who I work with, but her ex-husband would’ve been the year above me when I was at Hamstel school. These weird connections make me laugh. Either I know too many people, or the universe likes to mess with my head! 

      Chemo went quickly, no problems at all. I was in Bay 1 with 4 gentlemen and a lady I remember from a few weeks ago. Had a few conversations with them, but they all left before me, so I just sat listening to podcasts again. Hannah picked me up at the end, so she has now got to experience the waiting in the car park game. 

      Got home, ate pizza and nearly fell asleep on the sofa, The girls sent me to be and I was asleep by 10pm. 

    • Friday 22nd August 

      Everyone is ill. Emily became ill on Wednesday and has been banished to her room. Hannah had sniffles and kept saying it was hay fever. Now she has a sore throat. Simon is complaining that he has something as it’s behind his eyes and he doesn’t feel right. So last night Hannah stayed over at Tom’s house so that I could isolate in her bedroom. It might’ve been the right solution for Simon as I had a terrible night’s sleep.  

      Restless legs are becoming a real problem after the steroids, or is it the chemotherapy itself? They ache so much, and I am constantly putting them in and out the bed covers as I don’t know what to do with them. The bed’s too hot, put one leg out. Still too hot, both legs out. Too cold, one leg in. Not that leg, the other leg, and so on, and so on, and so on. So, I listen to a podcast. Then another, Then another. Sleep doesn’t come. Then it does. Then by bowels wake me up at 3am as I must go to the toilet NOW. Back to bed and start the cycle of the legs all over again. Finally fall asleep at around 5am, then brain wakes up at 7:30am as it’s time to get up and take the pills. 

      Extra pills needed today as the bowels didn’t want to keep anything in them again. 4-5 times in 24 hours was when I was told I needed to take the Imodium. 5 times in 16 hours qualifies. I just hope normal service resumes shortly.  

      Emily hid in her room all day before work at 4pm. Hannah came home just before that to get Emily and Simon spent all his time when he was home from work in the garden. I had Jackie over at 2pm for a catch-up. Although my fear of needing the toilet meant my water intake has been low again. I need to stop doing that and look after my liver and kidneys.  

      It was good having Jackie over; I haven’t seen her since just before the treatment started. She’s changed her hair style (added a fringe) and it really suits the shape of her face. I should’ve told her that I thought she looked gorgeous, but we were talking so much, I didn’t get the chance to. 

      Dinner was from the fish shop as no-one has been shopping yet. I think it’s my job to organise that. I’m not sure if the ill ones in the house have realised that we’re running out of evening meals. 

      Hannah had told me that she was going to sleep in the snuggle room tonight so that I could have her bed again. Grumpy, ill Hannah after dinner then grumbled about not having her bed back, so poor Simon has now moved to the snuggle room so that I can have our bedroom. I feel awful about asking Simon to sleep elsewhere, but I can’t risk getting anything and having to go to hospital. It could mean that my treatment is delayed, and I just want to get this all over and done with as quickly as possible. I’m also walking around the house with a mask on and constantly washing my hands. Maybe my family should be doing more to protect themselves to help protect me? 

      On a lovely note, Steve sent me some flowers. 

    • Day 8 Chemo Day Thursday 21st August 

      Got up, ate breakfast, had a bath, and left in time to get to the hospital for 9:15am. It does make me laugh that you get there on time, but you’re still in the waiting room 30-45 minutes later.  

      Got called through and was in Bay 3 today. Only 4 chairs in that bay but it’s right in front of the nurse’s station, so it’s not as quiet. Must’ve been my lucky day as bloods were done and I was attached to the first drip within 15 minutes. Tablets were administered at 11am, cold cap was on head straight after and paclitaxel was started just before 12pm. All done by 1pm and then waiting another hour for the cold cap to finish. Simon collected me at 2:15pm. Fastest one so far! 

      Stomach wasn’t happy on the way home and I was in the toilet a short while after we returned home. It hasn’t happened that quickly before so I may need to ask the chemo unit next week if I should be worried about that.  

      I have a feeling it may continue throughout the evening. This is one of those side effects that I struggle with. How do I know when to take the tablets? What if the tablet that stops me from going altogether? What if I take it too early and my bowels were going to stop anyway? Well, they said take the tablet if I go 4-5 times in 24 hours. Let’s see what happens. 

    • Saturday 16th August 

      Woke up this morning feeling ok. Took all the tablets and ate my breakfast. 

      Did a bit of tidying up and some washing up. 

      Had a tin of Heinz tomato soup at lunch time. My tastebuds really didn’t like it. Everything tasted very metallically. I’m glad a had a cheese roll to accompany it. It was so bland with no flavour, even though I had added quite a lot of black pepper. I was really looking forward to it as well. 

      I have been sitting on the sofa most of the afternoon, trying to decide if I need a nap or not. 5 ½ hours sleep last night, so it was better than the night before. Spraying my legs with magnesium is really helping the restless legs. But I’m struggling with my stomach. It’s maybe hungry as it grumbles, but maybe that is the water going down. So, I am snacking on barbeque graze and topping myself up with water. I think it’s working, and I’ve got to keep flushing my kidneys. 

    • Friday 15th August 

      Absolutely crap night’s sleep. Fell asleep ok, no podcasts needed. But I was awake at 1:04am. I had to come downstairs to get my air pods, and I picked up the magnesium spray whilst I was at it. Also went to the toilet to see if that would help. The spray really worked on my legs. If anything, it made them feel heavy, which then scared me as I thought I would be stuck not being able to move my legs! 

      Listened to one podcast, no sign of any sleep. Listened to another, still awake. Listened to a third one and then thought it would be better if I didn’t listen to anymore and to try and get back to sleep. At 4am I heard an aeroplane take off. At 4:45am I heard the noisy motorbike do its usual trip through Rayleigh. A little while after that, the foxes decided to turn up and do some screaming, to which a crow then shouted at them, and they stopped. The alarm went off at 6:30am, so that sleep was a waste of time. Hannah was at work at 7am, so she came in to say goodbye and she left Toast with me. I then feel asleep and was woken by Simon at 7:15am. 

      Got the hospital and saw the picc nurse who fitted my picc line. She was happy with the way everything is healed but doesn’t know why it would still be bleeding. So, she has put some more glue on the metal bit that goes into my arm. They checked to make sure my picc cover wasn’t too tight, it isn’t. It might be where I am rolling on the arm during the night, so I must make sure not to roll on that side. They are always so nice to me so it was lovely to see them again, I just hope this doesn’t become a regular occurrence or they are saying it would mean fitting the picc line in the other arm instead. 15 minutes later I was back in the car and on my way back home. 

      I’ve been shattered but unable to sleep all day. I feel like a walking zombie. 

      It’s 1:28am and I was going to go to bed earlier than this, but I’m scared it’s going to be another unsuccessful night’s sleep again. Oh well, another night with magnesium spray and listening to podcasts. I swear it’s the steroids. Thankfully they finish tomorrow, just as I start the injections that make my bones ache. Yay, living the dream. And it’s felt like one day has lasted a whole weekend. I’m not sure if I filled my water quota today but I have been to the toilet 4 times. So that’s double my usual amount. Winning. 

      Oh, and I called the doctors surgery to ask about the district nurses that can do my blood tests. The receptionist said she thought it was only the housebound patients that have that, but she will call and check. A little while later, she calls me to say that the district nurse can do it but the referral should’ve come from the oncology department and not the doctor’s surgery. So, another new thing I have learned! The lovely district nurse has booked me in for the day before round 3. She said about my weekly flush, but I said I’m at the hospital every week for chemotherapy so they do it at the chemo unit. I’ve had a lot of help today, and I’m grateful for all the help these lovely ladies have given to me today. Just a shame they can’t help me sleep.  

    • Round 2 Big Chemo Day Thursday 14th August 

      Not the best of starts to the day. I was a bit late getting up so had to rush my breakfast. Bag was all ready to go, so off we went. 

      Got to the chemo unit, had my book with me and sat reading in the waiting room. My appointment was at 9:45am and we always arrive early. Today on the board it said appointments were running 1 hour and 30 minutes behind. So, I was all prepared for a long wait. Thankfully it was only half an hour for me. 

      Sat in the chair, they started to attach me to the flush through drip when one of the doctors came over and said I needed my bloods doing again. I only had them done on Tuesday. She came back later to tell me that my immunotherapy and chemotherapy has had to be adjusted because my kidney function is low. Not drinking enough. So, the pharmacy is having to make new ones for me. Thankfully it didn’t take too long. 

      When they pump through the antihistamines, they instantly make me feel drowsy and spaced out. Then I must give my name, date of birth and first line of my address, so that takes a lot of concentration. Immunotherapy starts and then they come and put the cold cap on me as it must be on for an hour before the chemotherapy. 

      It was quite warm in the unit today, so I was quite glad to have the cap on. Bruno (one of the staff) sat down in front of the air conditioning unit to cool down. I did tell him he needs a cold cap. Not only does it cool my head, but it also cools my whole body. Even my nose gets cold. I hope I can keep tolerating it in the autumn. 

      The other two rounds went in quite quickly. It’s amazing how much quicker the picc line pumps everything through. So that was a good decision. Not such a good decision though as the nurses wouldn’t change the dressing as they wanted to leave it to the picc nurses to do it as it is still bleeding. 

      I didn’t really talk to too many people again. It’s hard to have a conversation with a massive cold cap on your head and I struggle to turn my head. Spoke to the man to the left of me. He was telling me that he had pains in his stomach which he thought was his appendix. Went in for a CT scan where they found kidney stones and they saw something on his lungs that they weren’t happy about. He said over twenty years ago he had lymphoma, and he had been treated for that with some strange drug that contained TB. They were concerned that there was TB in his lungs, so he was on a course of antibiotics for that for a year, whilst biopsies were taken on his lungs. They came back as cancerous cells. His daughter was also diagnosed with early-stage breast cancer at the same time. It’s now been a year since her treatment started, and she has had her operations and chemotherapy. That’s a lot of things for one family to go through all at the same time. 

      Had my usual lunch of a cheese and pickle sandwich but opted for a KitKat and a toffee yoghurt, followed by fruit shortbread biscuits with my two cups of tea. Made sure I drank two jugs of water as well. 

      Listened to a few podcasts whilst I was there. I’ve worked out that I can’t listen to Chatabix as they make me laugh too much. I tried to sleep but it impossible for me to relax enough to sleep. Some of the other women manage it, I just get disturbed by the machines bleeping. 

      Finished the chemo and then had to sit with the cold cap on for an extra hour and a half. So, I let Simon know my estimated finish time, so he didn’t have to rush down. I was all done by 5pm. They gave me my bag of drugs and needles, and I left to go home. 

      It leaves me feeling very dizzy and disorientated, but I was still able to leave a message with the picc nurses to let them know that the dressing wasn’t changed. They called me back within half an hour and told me to come in tomorrow at 8:15am. 

      I went to bed at 9pm due to being shattered.