May Contain Nuts

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    • 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. 

    • Monday 11th August 

      Lisa and I had arranged to go to Hyde Hall today. I awoke this morning to find that the picc line is leaking blood out the bottom of the dressing, and I’m worried if blood is getting out, then germs can get in. I called and left a message with the picc nurses asking for advice. 

      Lisa picked me up and I put it to the back of my mind. Just as we pulled into the car park, my phone rang. It was Southend Hospital. Could I get the hospital at 1pm? Not really. How about 3pm? Yes, I can do that. Another trip to the hospital, yay. 

      Anyway, the visit to Hyde Hall was lovely, but I was very conscious that it was a hot day and should’ve had a parasol or something extra with me.  

      Lisa and I had a good catch-up. She also asked about everything and, yet again, I was more than happy to share everything with her. I most definitely do talk too much! 

      Hannah took me to the hospital. It was cleaned up, different dressing attached, and I was told to call them again if it was still behaving like that. The dressing felt a little bit better, not so tight, so I thanked her and went home. 

    • Saturday 9th August 

      We’re a few days into Week 3 and things are so much better than last week already. I woke up this morning not feeling as sick as I did last Saturday. I took my anti-sickness pill this morning but not at lunch time. I’m hoping that my body is coping now, and I can try and reduce the number of tablets this week. 

      I had enough energy this morning to clean the dining room. Listened to a disco album whilst I was doing it! It may only be one room, but that’s a small victory for me. The picc line feels weird today, but that might just be the medical cover that is on it. The picc cover is so much softer and comfortable. Anyway, I digress. I cleaned the blinds as well so that shows how keen I was! 

      Simon was keen to go out somewhere last night, even if it was for a drive to get a drink somewhere. So, we popped to Create 98 as Howard was DJing there. Stood outside with Sinead and Al for a while, stayed for a lemonade and then came home after an hour. It felt weird and good to be out. I was in a bit of heightened state with my picc line, but I need to come to terms with it being there and not to panic about catching it too much. It has a cover on it; it’s not going to get caught. Very weird the things that go through your head when you feel vulnerable. 

      It’s James and Carla’s wedding today. I was hoping to make the ceremony, but I can’t risk needing to use the toilet at the wrong time! I can’t believe my life is currently based around my stomach and bowels. Do I feel sick? Is it firm or solid? Everything is noted down to see if there is correlation between treatments. I just keep telling myself that this is just for 24 weeks … if I can remember to keep doing it (unfortunately some days have been left half done!). 

      My skin today is very dry on my hands, not just on the back but on the side of my palms. I think I’m going to need to have more lip balms and hand creams in different parts of the house and in my handbag. 

      We got to the weeding at 6pm and left just before 9:30pm. It was good to spend time with Nicola and Paul. James nearly cried when he saw me. Daft wally, and then Carla nearly did! Then we were joined outside by James and Courtney. It was a lovely evening with friends but the picc line was very uncomfortable and I could feel it constantly. 

      I couldn’t risk going in the marquee, I heard James’ brother saying that he felt rough and so did his wife and kids. After hearing that, I couldn’t even face going into a crowded area with potential other people that he had infected. It was a lovely evening anyway, so we all stayed outside. Great pizzas, but I forgot to take my tablet with me, so my stomach was gurgling and wasn’t happy with me. I will have to rectify that tomorrow. 

    • Day 15 Chemo Day Thursday 7th August 

      I went out to lunch with Garry and Davey yesterday. It was my first lunch out since treatment had started. I hope it didn’t show that I was nervous. First time out to lunch and first time out with my picc line. I didn’t need to worry, everything was fine, and the lunch was tasty and just what I needed. I now have a new companion for Teeny Tiny keyring Toast, he is called Jellycrap! 

      Woke up a bit later than usual today, it was a bit of a disturbed night with me keep worrying about the picc line. Of course I didn’t catch it, but the thought of sleeping with my arm up, and breaking it inside, is the thing that keeps me waking up. There is a little bit of blood inside it, but they said that was normal and it won’t always be like that. I don’t like to look at it. I know I should, but it’s still bruised and there’s a big fuck off clear plaster in my armpit that is helping glue together the hole that she cut. I already have a little red mark from where they did the biopsy on my lymph node in my armpit, now I’m going to have another, bigger, scar. Thanks, thin veins. Which family member passed that little genetic trait to me?  

      Got ready for the hospital and got there with plenty of time again. Simon was in a better mood as he had taken the day off as holiday again. 

      I was offered Bay 2 or 3 today. I opted for 2 and hid in the corner. Bay full of older women today. Woman opposite me spent most of her time on video calls with her friends and family. Joyce next to her was someone I recognised from my first round. She had been in the chair next to me and complained about everything. She was still true to form today. Woman in the end chair was doing her knitting, and everyone came to look at what she was making. It’s a bright red cardigan for her granddaughter and she going to make one for the plumbers’ daughters as he’s a lovely man, always helping her out. Then she slept most if the day! At the end of my row was a Scottish woman who told every member of staff about the ambulance she had called the other week because she was so ill after the red devil that they gave her (EC chemo), and the ambulance still hadn’t come after two days even when she had been calling again for help. One nurse did ask her why she didn’t get a taxi straight to A&E, but then she cried and said that she was too poorly to have gotten out the house. She lives on her own. Now that must be hard. I have my family around me to help; she’s going through it alone. That’s tough. She got a lot of attention from all the staff, and she left happier than she arrived. 

      Picc line was used, which was weird. I thought I would feel more, but I didn’t. Felt as if nothing was happening. The pump on the drip sends everything through, so it goes in quicker. That’s a bonus. Bloods taken through the picc line as well. Having the dressing changed stung, a lot. I guess because it’s only just been done, but still, it smarted. A lot. 

      I didn’t talk to many of the people again. They may think I’m rude, but I put my air pods in and listened to podcasts. The room was filled with lots of women talking and machines bleeping and alarms going off. I still don’t feel like I want to make small talk with strangers. 

      Simon picked me up and we came home. Take away for dinner again, my choice and I opted for Pizza Express. It was delicious and I didn’t need to run to the toilet. That’s an improvement on last week. 

    • Tuesday 5th August 

      Picc line day. 

      Nicky, Liz and Claire came to sit with me on Saturday as Emily and Simon were at a car show and Hannah was at work all day. I was fine. Did get a little bit tired but I battled through. It was lovely to see them all. I’m not sure if I talked too much about the chemotherapy. I know in some of the leaflets and information sites they say that you should feel comfortable telling people that you don’t want to talk about, but once you get me started, I can’t shut up. I thought this blog would help me get it all out, but not everyone knows about it, so I just keep on talking! I told them that I’m having my picc line done on Tuesday and I’ll probably get a taxi to the hospital as everyone else is at work. Nicky and Liz offered to take me, so I might have to take them up on their offer of help. 

      Anyway, felt ok over the weekend, kept talking the tablets continued to eat some food. I can’t eat big dinners like I used to, so I get the child-like portions. 

      Hannah ended up swapping a shift this week, so she was available to take me to the hospital today. Well, both Hannah and Tom were available, so they dropped me off whilst they went out for brunch. 

      I was escorted by the receptionist to the picc nurses’ area, and I sat waiting for them to get the room ready. It’s a bit weird to perform surgery in what can only be described as a demountable building that is being held together with gaffer tape on the floors. But it was clean inside the room. I was asked to lie on the bed, with my right arm resting at a right angle to me on a pillow. An ultrasound was used to look for my veins. And look, and look, and look. They are too small she said, so she looked in my armpit. There is a thicker one there that she can use but it’s still a bit small. They looked on my left arm, and of course, there was a thicker vein on that side. Could we do it that side? No. The injury in my shoulder meant I was in pain just holding my arm there for a couple of minutes. How could I hold it there for an hour? The decision was made. To put it in my right arm, two local anaesthetics would need to be given to numb my armpit and the area where the picc line would come out midway down my arm. She cut into my armpit, inserted the line down my arm, and out the second cut in my arm, whilst also feeding more of the picc line towards my chest. I felt a very strange sensation in my hand, and it wasn’t pain but was pain, if that makes sense. The other nurse told me that because the picc line is going along a vein, the nerve endings run alongside the veins, and it has pushed against the nerve endings. It felt like someone was activating my nerves in my fingers, one after the other, very fast. Not something I would like to repeat but I have a feeling something similar may happen when they remove the picc line at the end of my treatment. 

      The other nurse came to check on me at one point and I think she may have noticed that I was crying. Or the fact that I had said at one point that I wasn’t sure if I had made the right decision if it wasn’t as straight forward as it could be. I was lying on an operating bed, with holes in my arm, and a nurse struggling to fit a tube into my thin veins. I had so many thoughts going through my head. How can this small lump have me going through all this. I’ve never been a sicky person. Always stayed away from the doctors. Made sure I looked after myself. Never took unnecessary tablets. I am nothing like my mum or nan who both liked a visit to the doctor to get all the pills. But I’m now lying here, wondering why all this is happening to me, when I don’t want to be here. I just want everything to go away. Is that possible? Could I click my fingers and wake up to my old life? No. I must get through this. This is still the beginning of the treatment; I have weeks and weeks to go yet. That’s the scary part, and I don’t think I’m coping at all with it. The nurse started talking to me about my family and she distracted me enough for me to relax and then it seemed the line was fitted, and I was being glued up and stuck together with massive clear plasters. I was given all my instructions, and the picc passport to always carry with me, and escorted to the waiting area where I was made a cup of tea and given a biscuit. Hannah and Tom picked me up and we went home. 

      Now I know they said I would get used to it being there, and I won’t feel it most days, but I’m not so sure you can used to a tube hanging out your arm that you are most definitely not allowed to get wet at all.