My hair has started to fall out at a considerable rate now and although I am blessed with thick hair which has disguised any major loss so far, I may have to take action soon. On a positive note, it has never been so easy and painfree to manage my bikini line.
I thought that I might get away without hair loss thanks to the cold cap but positive thinking has set me up for disappointment. For the first two weeks after round one, there was no more hair loss than normal. Then about four days ago it started coming out noticeably when I was brushing my hair, washing it, tying it up or letting it down and there are clumps on the pillow when I wake up. It’s ironic that for the first time ever we have had a dog living in the house and I am more worried about me malting everywhere rather than the dog.
I am unsure what I want to do now. I can’t really notice it yet when I look in the mirror, but I think I probably will be able to soon and that could be upsetting. On the other hand, looking in the mirror at a shaved head could be equally as scary! But I have always been curious to see what I would look like with a shaved head and I might feel slightly more in control if I make the decision rather than watching it fall out slowly.
So just as before, watch this space for any decisive action. I may be rocking a Britney circa 2007 look the next time you see me!
For the week after my first round of chemo, the side effects were manageable. I felt very nauseous and tired most days but if I kept on top of the drugs then it was ok. I found that I never wanted to eat anything, but if I could force myself then it made me feel a bit better. The Macmillan nurse Hannah had recommended eating little and often, which turned out to be great advice.
After the first week I seemed to turn a corner and was feeling almost back to normal. I didn’t have to take any more medication and I started exercising. One highlight of the round 1 recovery was getting back out on my bike around the Peaks with John when he came to visit with Gel & Raees.
The worst side effect so far has been mouth ulcers. This week I’ve had ulcers on my lower lip, tongue & cheek which have been unbearable at times and made it difficult to eat. I’ve been using Difflam mouthwash which numbs pretty effectively. The only catch is that when I use it, my mouth is so numb and tastes so minty that I don’t want to eat anything and when I haven’t used it it’s too painful to eat. I can conclude that having mouth ulcers is an effective way of reducing calorie intake and I would recommend it to anyone struggling with weight loss.
Summer in Derbyshire is proving to be cold and wet so far! Luckily we have a good setup in Bakewell that allows us to sit outside in relative comfort & warmth for when friends and family visit. Even more luckily, Tom and I have wonderful friends who don’t mind meals outside in the cold & rain so that we can maintain social distancing.
I have struggled to get out of bed some days. Not due to tiredness, but rather finding it difficult to motivate myself on a grey day when I have nothing planned. I am at my best when I am busy and I love having a routine, so moving home with no real plan for the next six months has been hard. Tom finds great satisfaction in cooking and baking. Something which my family and I have benefitted from hugely! I don’t get the same sense of achievement and therefore don’t want to spend my entire day planning and prepping food. Friends have suggested that I take up knitting or something similar but I see this as more of a hobby that can be done whilst watching TV in the evening. I miss having a real purpose. I have been out of university for three years and for two of those years I have really loved my job! Working in the practice in Bayswater and in the community practice in Hoxton were my happiest times. I loved having a routine of walking to work, having my day planned out and seeing different friends for activities in the evening. Life really slowed down when we went into lockdown and now just when restrictions are lifting, my life seems to be slowing down even further. I don’t usually struggle to entertain myself or find projects to do but I seem to have hit a mental wall recently. If anyone has any ideas to keep me entertained over the next few months, please do let me know!
I had to go to the GP to get my bloods done prior to round two of chemotherapy. Thankfully it was an uneventful visit. Nothing is ever simple though…on the day of having my bloods done, I was getting into bed at about 10:30pm and the home phone rang. I assumed it would be something to do with either of my grandparents who seem to be on a one-in-one-out policy for hospital admissions recently. Instead it was the out of hours GP who had seen my blood test results and thought that my neutrophils were “dangerously low”.
Neutrophils are a type of white blood cell that helps heal damaged tissues and resolve infections. Neutrophil blood levels increase naturally in response to infections, injuries, and other types of stress. Normal levels range between 1.5 – 8 and mine were 0.4. This puts me at risk of neutropenic sepsis. Neutropenic sepsis is when a patient with a low level of neutrophils gets an infection which they can’t fight off and become septic. If they don’t receive urgent medical treatment, they will die from overwhelming infection. All pretty light-hearted stuff!
Anyway the GP said that he would be calling Calow Hospital medical registrar to see if I should go into hospital. Luckily as I was not showing any signs of sepsis, I was allowed to stay at home. Phew! It does mean that I have to be extra vigilant to make sure that I don’t acquire any infections though as it would be dangerous for me.
I had expected to hear from the oncology team at Barts regarding my blood results the following day. When I got the call from the GP I then called the Barts “chemotherapy hotline” to ask for advice on what to do and to update them on the situation. Unfortunately the message must not have got through to my consultant because we didn’t get a call yesterday. I should have followed-up with them again but I had a busy day introducing Frank to my Granny.
Today I set off for London with Tom, Ben & Frank in tow, ready for round two tomorrow. As we set off Ben reminded me to call oncology just to check if they had seen the blood test results. It turns out they hadn’t and so when they did look at the bloods, they said it would not be safe to continue with chemotherapy tomorrow. We only found out this news when we were halfway to London so have decided not to waste the trip and have a weekend at the flat as Luke & Philippa are away!
It will be great to be back in the flat, I am really looking forward to being back in London and for Tom and I to have some space. Our one attempt at date night in Bakewell was gatecrashed by the rest of the household who also liked the idea of getting a curry and having a few drinks (Bakewell is somewhat limited for date night options).
The plan now is to do another blood test and see when it’s safe to continue with round two of chemotherapy. Tom and I are planning to show Frank the sights of London after the blood test. He doesn’t know it yet but he’s going to be a city boy so should get to know the big smoke!