My New Year’s resolution for 2019 was to be more glam…I’m still working on it. My oncologist, Melissa, is the kind of glam that I aspire to be – but she also really seemed to know her stuff. Both of these things made me warm to her. Picture a doctor version of Elle Woods in Legally Blonde, but at the end of the film when she’s really cracked it and is being a boss.
The appointment with Melissa & Hannah helped a lot of important questions:
Q. What kind of chemotherapy will I receive?
A. I am going to have 6 months of chemotherapy: 3 months of doxorubicin and cyclophosphamide then after 3 months I will swap over to docetaxel and the HER2 targeted drugs: pertuzamab and herceptin. After the chemotherapy has finished I will have to take herceptin for another 9 months, luckily as this is a targeted drug it means that it has way fewer of the horrible side effects!
Q. How often do I have to have it?
A. Every 3 weeks I will come to the hospital for it to be given intravenously. This will take a couple of hours each time. I will also have blood tests and a phone consultation to monitor my reaction to the drugs.
Q. What are the side effects?
A. Mainly fatigue, this will get progressively worse with each round. Hair loss, a cold cap can be worn for an hour before each session, during the chemotherapy then for an hour after treatment. It freezes the hair follicles and stops the hair from falling out, preventing hair loss. I’ve heard that this can be extremely painful and I often struggle with ice cream headaches so I can’t imagine I will last very long with the cold cap on. Hold tight for my head shaving party! The list of side effects goes on…Nausea, loss of appetite, stomach upset, high risk of infections, damage to the heart (short and long term effects), sore mouth, loss/change of taste and finally, peripheral neuropathy. Sounds like a walk in the park! I don’t know why more people don’t sign up for chemo.
Melissa spoke about how the chemotherapy works on targeting parts of the body with high cell turnover, aiming for the tumour. Caught in the crossfire will be my hair, nails, gut lining and ovaries. Because chemotherapy will affect the ovaries they offer Zoladex. Zoladex works by shutting down the ovaries and inducing menopause with the aim to preserve fertility. A medically induced menopause means I would have all of the side-effects of menopause (hot flushes, mood swings, night sweats & difficulty sleeping to name a few) but my body would have no time to adapt to this change, meaning it would be a real rough ride. So for the very tempting offer of an extra menopause in my lifetime plus the fact that taking Zoladex only improves the chances of my fertility recovering after treatment by 10% – I politely declined.
Overall the meeting with Melissa was a positive one. The saddest part was when she emphasised what we had already been told by the surgeon, Laura, that I should be shielding. This wasn’t a problem last week as Tom and I had already been signed off work, Philippa was working from home and Luke had kindly taken some time off whilst we found out more about my treatment plan. This week Philippa has been asked to go back into the office as lockdown is slowly lifted. Luke also has to go back to work in A&E. With both of them needing to leave the house for work, it means that they both have to move out until we can work out a better way to keep me isolated. (Sorry Luke & P – I really didn’t want you to go.)
Melissa also talked about the plan for after chemotherapy. I should have my surgery 3 weeks after finishing chemotherapy, which by my calculations is sometime around January 21st. I remember when my grandad passed away and mum accidentally arranged his funeral on Ben’s birthday (grief really messes with your head) anyway it turns out we both have a knack for planning inappropriate birthday celebrations for Ben! (Sorry Ben!)
One action point from the appointment with Melissa was that I had to get my contraceptive implant removed, meaning a trip to the GP. As I had only just moved to my new GP practice, I could forgive them that they kept me waiting over an hour whilst they got my notes from the old practice in Pimlico. I could also forgive the GP for not having a chance to read through my notes before I came in. I could not, however, forgive him for the following:
GP: so why do you need your implant taking out?
Me: I have cancer and my oncologist has told me that I need to have it removed
GP: No, they should not tell you that. You should be able to live as normal life as possible.
Me: yeah but they have told me to do this, so please can you take it out?
GP: why don’t you ask your oncologist exactly why it should be taken out?
Me: I am just following orders and think we should listen to the experts. Please can I have it taken out?
GP: The implant only releases very low levels of hormones, it really should not make a difference to your treatment. Have you had your biopsy done already?
GP: have you had your cell receptors tested?
Me: yes and I have 8 out of 8 receptors sensitive to oestrogen so PLEASE can you take this out for me?
Anyway the implant is out now, thank god. I could really do without unnecessary battles along the way, they are so draining.
Wednesday I had to go in for a bone scan. First I was injected with radioactive contrast that took a few hours to be absorbed by my bones, then they scanned me. I had hoped that I might glow fluorescent green like Mr Burns in an episode of the Simpsons but sadly there were no such changes.
The choice of whether to go ahead with the fertility treatment has been taking up nearly all of my head space this week.
At the beginning of the week, my gut feeling was that I absolutely was not going to go ahead with it. Something was telling me that it’s just not for me. When I think about the scans and the blood tests and the injections, I physically cringe. I feel like I can’t go through with it. I feel as though the process of egg harvesting & IVF is something for women who have already thought about and tried for children but have been unsuccessful and who are now desperate to have them and would do anything to be pregnant. I am not at that stage and I’m not 100% sure I ever will be. Because I am not totally committed to the end goal, the idea of an unpleasant process is very off-putting.
I have been given some very mixed messages. All of the doctors that I have spoken to so far have assumed that I would want to go ahead with the fertility treatment – and they have set out their treatment plans factoring that in. They have all encouraged me to go for it but then immediately after tried to reassure me by saying “don’t worry, most girls your age will regain their fertility after the chemotherapy”. What is “most girls”? Most girls could be 51% or it could be 99%.
I think it’s Catch-22. If I have the treatment, I will not need it. If I do not have the treatment, of course I will be barren and Tom will never forgive me for not being able to produce the heir to the Jefferson fortune.
So this week I have been doing my research. I have spoken to Tom & my mum (of course) and my preggo best friend Rose. A good friend of mine kindly put me in touch with her sister who has been through multiple rounds of unsuccessful IVF. It was fantastic to hear a first hand account of what egg harvesting would be like. She reassured me no end. I also should have realised that having so many doctors as friends, one of them would be useful for advice regarding fertility. Thank you to Jules for imparting all of your wisdom and making me feel more knowledgeable about the whole process.
Today (Friday) I have just been to meet the fertility team again. I had a totally different experience to last time. I spoke to a lovely doctor called Litha and a nurse called Ruth. They made me feel in-control and reminded me that it was all my choice but also that we had to move quickly due to the shitty situation. Litha has even agreed to come in early next week to scan me. Tom and I have agreed that I am going to give it a try, and if I hate it then I can stop. At least this way we are keeping our options open.
Puppy pickup deadline is edging closer! Frank will be 8 weeks old this weekend so we are allowed to take him home. Tom and I have decided to move back to Bakewell for the start of my treatment. It means that Luke & Philippa can move back into the flat in London and have minimal disruption to their lives as they are going back to work. Mum & dad have very kindly arranged to work from home for a while longer, something I know they have got used to since lockdown and I think they have been enjoying. I will come back to London once every 3 weeks for my chemotherapy.
I am torn at the thought of moving home to Bakewell. On the one hand as I have to shield, Bakewell will be a much nicer environment with a garden and bigger home. I can also go on socially distanced walks with my friends and introduce Frank to new doggy pals. It really is the perfect place for puppy training. On the other hand I have just bought my first home and have barely had 6 months to enjoy living here yet. I love my Shadwell flat and have invested a lot of time in the plants on the balcony (which look fantastic right now), so I will have to leave them in Philippa’s capable hands and make sure I facetime for plant updates! I will definitely have London FOMO, although there really is so little going on at the moment that it might take a while for that to kick in. The flat hasn’t felt the same this week without Luke & Philippa (it’s been too clean & tidy without him) and although they very kindly said that I could stay here for the duration of my treatment, I know that it is a better decision to go back up north. So, instead of our big move to Australia that we thought we would be doing this year, Tom and I are making a big move up to Bakewell tomorrow with a drive-by puppy pickup!
- start fertility injections, scan next week with Litha then egg harvesting the following week (if I make it that far)
- chemotherapy planned start date 30th June
- pick up Frank
- be more glam (see attempt below)