**All words in bold have a link or a definition to explain and give more information at the end of each day**
June 22nd 2018: Day Seven-
Feeling crappy. Another day in bed was needed so nothing to report.
Shout-out to Dan And Phil Games for providing me with entertaining content during my bedbound days. Those two idiots have done me the world of good during chemotherapy.
June 23rd- June 25th 2018: Days Eight to Ten-
Antibiotics and fluids just starting to go in.
As soon as I woke up on the 23rd, I knew the direction we were going in and it was not the direction we wanted. I was heading for another bout of neutropenic sepsis.
Before going to bed last night, I felt strangely tired. Not exhausted but more sleepy than I normally would feel before bed. I just put it down to chemo but with hindsight, it was more than that. Add onto that odd tiredness, a cough and a sore throat, mouth and chest…really, I should’ve known something sinister was nigh.
The last time I had neutropenic sepsis I stressed how important it is to keep an eye out for the symptoms and your temperature because of how quickly it comes on and the fact that neutropenic sepsis can kill if left unchecked. The timings of how I deteriorated really drive it home how vital it is to check on those symptoms so you take neutropenic sepsis seriously.
- 10:00am District Nurse arrived and did my PICC Line care. A cough; a sore throat, chest and mouth; and exhausted.
- 10:30am District nurse finished. Took my temperature first time (37.5 degrees). Same symptoms, feeling increasingly exhausted.
- 11:00am Took temperature second time (gone up to 38 degrees), told to get to the hospital. Same symptoms.
- 11:30am Arrived at Queen’s Hospital. Same symptoms but could no longer stand or walk without support. My temperature increased to 38.3 degrees and I was tachycardic.
- 12:30pm Antibiotics administered. Low blood pressure; a cough; a sore throat, chest and mouth; completely fatigued; unable to stand or walk; unable to open my eyes.
In the space of two hours, I went from feeling crummy with a borderline temperature to a zombie due to neutropenic sepsis. That is how quickly you can get into a trouble. That is why you need to keep checking your temperature. That is why you need to be vigilant of the symptoms. Please remember, neutropenic sepsis can kill.
Print screen of symptoms from a Macmillan Cancer Support YouTube vid.
So I was back in Queen’s Hospital in the MRU dungeon. You remember! The part of the hospital with no windows and no signal- a literal dungeon! Even the staff call it that! Thankfully this time I was put in a bay of four so it wasn’t as isolating and lonely as the other times when I was in a side room on that ward. The next day I was moved onto the Oncology-Haematology ward which has windows and signal, and I prefer a lot more for obvious reasons.
How neutropenic sepsis feels but without the smile. Thanks, Katya!
During my time at Queen’s, the oncologist looking after me was the same one that looked after my ma. It was really nice to see him and have the chance to thank him for everything he did over the years to save my ma. He walked into the bay and tried to shake my hand, but I stopped him and went in for a huge instead; I’ve known the man for years, we’re beyond that kind of formality. When he was introducing me to his registrar, he said that he has looked after ma but also added on that he didn’t do a very good job at the end. It really hurt me to hear that because he did care for brilliantly throughout her time with cancer, which I told him firmly. When I was told that he was the oncologist who was on over that weekend, I straight away felt safe because he’s incredible and I trust him. He sold himself short by saying he didn’t look after her well at the end.
He also got me out of the hospital at 8am on Monday (25th). As I’ve written about previously, I’ve been waiting for my appointment to see the genetic counsellor for three months which happened to be on the 25th, and I made it very clear that I was not going to miss it. He was completely on my side about this and had me discharged on the promise that I would return if I had any problems again.
I got a cab straight from Queen’s to King George’s Hospital, where the appointment was taking place, and met Auntie Gen for our next appointment. The latter hospital was the place where I was initially diagnosed and the appointment was in the same part of the hospital too. I felt physically sick seeing that sign, walking through those doors and sitting in the same waiting room.
The genetic counsellor was fantastic! She explained everything about genetics, the types of mutation they’re looking for, the possible outcomes, etc. in a way that was easy to understand. It was another case of having to explain my recent history and see the shock-complete sadness response, which made her question whether it was a good idea for me to have the test now. I don’t need it to decide on surgery because that’s already sorted but she was concerned that with everything that I’ve got on my plate, it wouldn’t be a good idea to add something else. It’s completely understandable due to the mental, emotional and physical impact of finding out you have a genetic mutation that predisposes you to cancer and the prospect of passing it onto any children I may have in the future. To be honest, I have prepared myself to take the test so was fine to do it. By the time the results come back (twelve weeks), my chemo and surgery will be done so there will be less on the depressing plate that is my life. Also, I’m not just doing it for me and reducing my own cancer risk, but for my family. If I carry a genetic mutation, they might too and most of them want to know. It feels like an additional responsibility on my shoulders but its one that I don’t mind having. If you can reduce your risk, you should!
So genes! I explain cells and genes to children as being the separate lego pieces that come together to make us! Genes carry sets of instructions on DNA sequences that determine our traits or characters we have inherited from our parents. Sometimes our genes change or mutate which can contribute to developing a number of conditions, including cystic fibrosis, sickle cell anaemia and some cancers. In the UK, the NHS has a genetic service that offers to test to look for changes in certain genes to see if there any mutations. For cancer, it is offered when you have a strong family history of certain cancers or, as in my case, you develop cancer during an age when it is rare to develop it.
For breast cancer, they are looking for alterations to the BRCA1, BRCA2, PALB2 and TP53 genes. These genes have been identified as increasing the likelihood of developing breast cancer, as well as other types of cancer. We all have these genes, but having mutations in them can increase your chance of developing cancers. Even if there is a family history, it might not be due to inheritance. Environmental factors and old age play a role in genetic changes, and there are a number of risk factors that increase the likelihood of developing cancer.
There are three possible outcomes of the test. The first being that they find no mutation! The second that they find an unknown mutation which means that there is a change but they do not know whether that played a role yet because more research needs to be done. The last outcome is that an identifiable genetic alteration is found. If so, your cancer team will make decisions to manage your care and reduce risks which include pills or surgery. They also send you an appointment to discuss the results, answer questions and discuss the options available screenings. They also make decisions about testing other family members and can refer them on for testing.
Genetic testing is optional and even after consenting, you can remove this if you change your mind. There are huge emotional and mental implications of genetic testing which makes the right to remove consent incredibly important. I have no clue what the results will say when we get them back and I don’t really feel ready to think about it right now, but I know that once they are back I will face it with the help of everyone who has stood by me so far. And obviously, I’ll be writing about it on here.
Links/ definitions:
- Genetic Counsellor: Medical professional who has received training in human genetics to deliver support, advice and information about genetic conditions.
- Genetic Mutations: Permanent changes to a DNA sequence that makes up a gene. It is either inherited from parents or acquired at some point in life.
- Breast Cancer Care (Breast Cancer, genes and family history): https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/am-i-risk/breast-cancer-in-families
- What is a gene?: https://kidshealth.org/en/kids/what-is-gene.html (a children’s website because I am not scientific, at all)
- ‘Genetic Testing for Women for Women with Breast Cancer’ information sheet provided by GOSH North East Thames Regional Genetics Serice (Department website: https://www.gosh.nhs.uk/medical-information/clinical-specialties/clinical-genetics-information-parents-and-visitors)
June 26th 2018: Day Eleven-
Oh, it feels fucking fabulous to be out of the hospital!
Huge antibiotics- another reason I don’t want neutropenic sepsis again!
As was previously gathered duirng the other times I’ve had to stay in due to neutropenic sepsis, I fucking hate hospital stays. Not my cuppa tea! Who really enjoys sleeping in a bed that isn’t your own? Who really wants to (try to) sleep in a light room with three strangers? Who really wants to be woken up every-so-often to have someone check your stats? Who really wants to be removed from their loved ones, including an adorably cuddly dog? Not me.
In the same spirit of last time, I’m terrified of having to go back into the hospital but I have also decided I am not getting neutropenic sepsis again. I’ve made up my mind! It’s not happening again, I’m not going back into the hospital and I bloody well mean it. NEVER. AGAIN. At my next Pre-Chemo appointment, I’m going to ask for the GCSF injections to be added onto my prescription to stop my neutrophils decreasing into the ‘neutropenia zone’ again. The oncologist I saw a Queens told me to ask.
We also had another first to deal with while I was in the hospital. It was my cousin, Shaun’s, birthday. The first one without ma. Shaun passed away in 2004 from Pancreatic cancer. I wanted to be with my Auntie Gen and Uncle John (his parents) to support them, but being in hospital meant I couldn’t and that hurt. I don’t know how Shaun would’ve reacted to ma’s recurrence, her death and my diagnosis. I am thankful that it meant he didn’t have to feel all of that pain but I know he’d be a leading member of the family supporting us through it all with his cheeky ways. We always thought his cancer came from his father’s side of the family because no one had developed cancer on our side biologically before him. With mine and ma’s diagnoses, that has been through into disarray and we have no clue. One of the genetic mutations linked to breast cancer also increases the predisposition of developing pancreatic cancer.
Going back to The Elm Breast Care Centre at King George’s Hospital has got me thinking an awful lot about this whole experience. As soon as I caught sight of the sign for that part of the hospital, I was filled with anxiety, dread and nervous energy. It was the place where I was told that I had cancer. I could see my Aunties and me on that day last year when we got the news. I could see it so clearly that it felt like I was having an acid-induced hallucination. I never thought that going back there would produce that kind of reaction; I knew it’d hit me, but not with the amount of anxiety that it did.
The sign of the department where I was diagnosed.
It’s so strange to think back to the day I went for the initial tests and the day I returned to be given the results. That strangeness comes from the thought that one moment in a room completely changed everything. You walk in a physically healthy adult (mental health, not so much for me) and exit with breast cancer- not the gift you want to leave a room with.
As I’ve repeatedly said, cancer finds its way into your mind too and there is nothing abnormal about that. Cancer is huge! My anxiety that was caused by going back into that room was natural. My time in counselling/ therapy over the years told me to not let those feelings consume me and not fight them. Stop, breathe, create a space for them, feel some of it, then let them go. I am more than cancer, I am more than the room where they diagnosed me, and going back there has shown me how far I’ve come since that day.
Since coming home from my most recent hospital, all I’ve is rest. I’m sure you can see where that kind of reflection came from. The main reason for resting up is that Kat is coming down to London from Manchester!!! If you’ve been reading my blog, you will already know about Kat, how incredible she is, how she has supported me through my diagnosis and how excited I am to see her again. The last time we met up was soon after I was diagnosed. However, the last time we saw each other properly was the day after I found out that I had breast cancer. Kat is my sister. It broke my heart having to call her that night and give her the news, in many ways telling her was the hardest person to tell because of how close we are. She sobbed. Obviously, we’ve seen each other cry but I had never heard her cry like that and it broke my heart. She came back to London the next day to be closeby and I’m so pleased she did. Throughout our friendship, we’ve always said ‘we’. Whenever anything happened we would tell each other that ‘we will get through this’, she would especially tell me this to support me during the troubles I’ve had. When she came down to London the next day, she showed me that ‘we’. Every time we FaceTime, she shows me that ‘we’.
NOTHING will stop me from being able to be reunited with her! She’s planned a belated birthday surprise for me (it literally is a surprise, I only found out tonight the part of London it is in and another person who is going!) and the next day we’re having a girly day together.
NOTHING IS GOING TO STOP THIS FROM HAPPENING! Last night, as I tried to sleep, I had a bout of major negativity. I felt exhausted from the hospital stay and genetic appointment which started to make me frightened that I wasn’t well enough to leave and would have to go back. At that moment, I thought to myself ‘I hate my life’. I’ve struggled with my clinical depression and anxiety throughout my diagnosis but had been making quite a lot of progress, so to have that thought hurt me. Thankfully, the timing of being reunited with Kat gave me something to think about and use to find my realistic positivity as I dried the tears from my eyes. It reminded me that tomorrow will be kinder, and it will be the literal 24 hours later tomorrow.
June 27th 2018: Days Twelve:
The countdown app!
KAT IS BACK TODAY!!!! I am more excited about this event than finishing chemotherapy. I shit you not!
In preparation, I’m spending the day resting and religiously taking all my post-hospital medications so I feel fantastic for later. Let’s face it, none of the day matters except the parts when I got to see her and have my birthday surprise. Auntie Gen has been asking me for days about it and all I can tell her is I don’t know. At the start of the day, I knew I was going to Waterloo’s Las Iguanas (one of my favourite restaurants) with Dhara to meet Kat there at 8:00pm.
I felt so excited while getting ready for tonight. I wanted to look brilliant too, so went with my new Urban Outfitters dress, my leopard print kimono, a big black sun hate and huge circular sunglasses (a wee birthday gift to myself). When Dhara and I left my place at the tube station, I felt like cracking and stylish. As always, Dhara was acting as my cheerleader and personal paparazzi by giving me loads of compliments and wanting to take tons of selfies.
When we arrived at Las Iguanas, I was hit with a table of some of my nearest and dearest friends waiting for me, cards and even a ‘Happy Birthday’ balloon. Like I wrote before, I had no clue that any of this was going to happen. Seeing my friends, the cards and the ballon, filled me with hundreds of emotions with the biggest being gratitude. However, I can’t put into words what it was like to see Kat again in person and hug for the first time in months. We all had an incredible evening filled with laughter, food and love- three of my favourite things! Chloe used the cancer card again so she could attend and get there on time. We all tried to explain to Tom how Love Island works. They’d even clubbed together and got me a voucher for Selfridges! Cheeky buggers, I’m not that special! At the end of the night, Elina took the surprises one step further and pulled out two boxes of Lola’s Cupcakes. My lot know me so well! If you haven’t tried Lola’s cupcakes yet then you need to put your laptop on sleep, get one, eat it and continue to read afterwards.
Team Fuck Cancer.
Our night ended on a strange note. Our waiter told me that he liked my haircut…he liked my bald haircut. It was the first time that anything like that had happened so I wasn’t sure how to react. I just stood there and made some strange murmuring noises, as my friends explained to me that he was complimenting me. At some point, I said, ‘that’s lovely but I got this from chemo so no thank-you’ and left. Some minutes later, Elina came out and explained that the waiter has stopped her to speak to her due to being very confused about my reaction. The poor sod thought I had shaved my hair off as a fashion choice and didn’t realise that I was ill. With hindsight, I feel like a right bitch but it was the first time that something like this had happened and I didn’t know what to do or how to react.
Cake and friends- perfect combo!
Kat, Dhara and I got a cab back to mine because I was too tired to take a train back. While in the cab, I had that overwhelming emotional wave again and was filled with gratitude as I listened to two of my closest friends chattering away. Grateful that I have an incredible support network around me who have continued to go above and beyond in their love and care over the last eighteen months. Grateful that I am here to have time with them. Grateful, most of all, that tonight they showed me that I can enjoy occasions like my birthday even without my ma.
Ma said, back in 2013 when she finished her first round of cancer treatment, that if anything ever did happen to her that she knew I’d get there and be okay eventually because I have such a tight, protective and nurturing group of best friends around me. She was right.
June 28th-29th 2018: Days Thirteen to Fourteen-
Today I woke up with a huge smile on my face. Last night, I had laughed for hours straight and this morning I woke up to see my best friend in the same room. When Kat was in still based in London, we would have lots sleepovers and girly days in/ out. With the amount of time since we last had one, it felt so special to have the chance to do it again. I thought it’d be a good idea to have the day at Westfield Stratford; lots of shops, restaurants, cinema and seats for me to rest.
For me, it felt like any other of the times we had come together but even better. We spoke about life, laughed about silly things, treated each other and even saw Joe Wicks in the food court. I was any other woman again having a day out with one of her girlfriends. It could’ve been any other day years ago before ma’s death and my cancer, except we are even better versions of ourselves.
The next day Kat went to see some of her nursing school friends in another part of London and left in the afternoon. We were unable to do anything in the morning because I had to wait in for the District Nurse to come to complete my PICC Line care, which made me feel like a shitty host but thankfully Kat is understanding (being a nurse helps with that).
The last couple of days having her down in London, seeing my friends come together for my birthday and their treats they’ve given me has been the perfect way to begin the countdown to finishing chemotherapy. July 6th will be my last chemo…in one week! These last few days has reminded me of what I have to look forward to once chemotherapy is finished and I’ve recovered from surgery. This is exactly why it has been so important for me to make the most of the day when I feel physically well and why I recommend doing that to anyone who is having chemo or dealing with a long-term health condition. The people who have been part of those days are why I advise you to be to accept support. They are all symbols of hope and that tomorrow will be kinder. They put the life back into existing which being unwell can take away. Diseases, like cancer, take lives but while you can, don’t let them stop you from living. It doesn’t have to be anything huge, it can just be a coffee in the cafe on your own or a ten-minute phone call.
Tomorrow will be kinder.
Weekly Shout-Outs:
- Auntie Gen: Alive and on this earth, there is no one else’s hand who I would rather hold from my hospital bed.
- Prudie: Seeing your wee face and feeling those big cuddles when I got home reminded me of the colossal amount of love between us and how special our bond is.
- Auntie Sharon: Our mad ways, puns and conversations about chakras made my cheeks hurt from laughing so berry much.
- Becki: I don’t know how you put up with Auntie Sharon and me when we go off on one haha! Somehow you managed it in the MRU. Congrats!
- Kat: You brought me so much joy over the days we had together. I don’t exactly know how to put it into words. You are my family and that will never change.
- Dhara: My cheeky sidekick! You came to the hospital when I was taken in again and showed us just how much you are part of our family team.
- Elina, Chloe, Henna & Tom: You were part of giving me joy and showing me I could celebrate things without my ma, which is a huge life-lesson that I will carry with me as I continue grieving. It helped me take another step forward.
delightfully depressing. 