I have officially completed my first full week of treatment! So, 1 chemo and 5 radiotherapy sessions done, 1/20 to go!
So far my symptoms have been minimal, the only thing I am suffering from is nausea. The best way I can describe it is like having a permanent hangover…feeling kind of sick and pathetic and craving only crap food! Obviously isn’t the most fun thing in the world but it could be worse. I’m eating my own weight in ice lollies because they are the only thing that doesn’t make me feel sick…I’m probably going to need new teeth by the end of my treatment!
Tomorrow my second week of treatment starts with chemo and radiotherapy and then on Thursday I will have a review as well as my radiotherapy. This will give me the opportunity to speak to a doctor about how I’m getting on and hopefully they will review my anti-sickness medication. It’s really important to keep them in the loop about side effects/problems because the sooner they know about it, the easier it is to get on top of it.
The treatment itself is pretty straight forward, the radiotherapy takes 10-20 mins depending on whether they do scans at the same time (for my first 3 they did but as the images showed everything lined up perfectly they will just do these once per week from now on). The chemotherapy takes about 3 hours. The worst bit is the travelling…at the moment there are a LOT of roadworks so it’s a 3 hour round trip every day in which I insist on blasting the air con (because I feel sick) so my poor ma is sat there freezing!
A few people have asked me about the name ‘All adventurous women do’, so I thought I would explain.
In the HBO show Girls (Season 1 Episode 3), by the incredibly talented Lena Dunham (if you haven’t seen it watch it immediately if not sooner), Hannah finds out she has Human Papilloma Virus (HPV). There is a scene where Shoshanna tells Hannah that Jessa says “all adventurous women do [have HPV]” (see video clips)!
HPV is an extremely common virus which most people will contract at one time or another. Worldwide, HPV is the most widespread sexually transmitted virus which 80% of the population will contract at some point in their life. Most of the time the body’s immune system is able to clear the infection easily and it is entirely possible to have the virus without any knowledge.
There are over 100 types of HPV. The majority of HPV types infect the skin on external areas of the body, for example verrucas and warts on feet and hands.
Around 40 types of HPV affect the genital areas and approximately 20 of these types are associated with the development of cancer. Around 13 of these 20 types are considered oncogenic (cancer causing), meaning there is credible evidence that they are directly associated with the development of cervical cancer, therefore are considered high risk. These high risk types of HPV are HPV 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59 and 68. High-risk genital HPV types show no symptoms, so a person infected may never even know they have it. Types 16 and 18 are the most prevalent, causing over 70% of cervical cancers (these are the types that the HPV vaccine protects against).
Additionally, there are nine HPV types that may be associated with the development of cervical cancer, but there is not enough evidence for these to be considered high risk types at present. These are HPV 26, 53, 64, 65, 66, 67, 69, 70, 73 and 82.
The remaining genital HPV types are considered low risk because they do not cause cancer. However, they can cause other problems, such as genital warts.
Whilst these types of HPV are predominantly associated with causing cervical cancer, anyone can contract and pass on HPV. Whilst barrier contraceptive methods do lessen the risk of contracting genital types of HPV, it is very easily spread and therefore cannot be prevented altogether.
In the UK HPV testing is carried out as part of cervical screening as it can only be tested from a sample of cells. So, ultimately the only way to monitor whether you have HPV or not and to prevent your risk of developing cervical cancer is through regular and timely screening (and of course through vaccination where appropriate). So go and get your cervix checked out, tell all your friends and family to go and support the vaccination programme for young girls, you might just save a life!
So last Wednesday I had a unilateral laparoscopic oophrectomy for ovarian tissue cryopreservation…basically I had one of my ovaries whipped out and stuck in the freezer 😉
Just to be clear not everyone who has chemotherapy and radiotherapy becomes infertile but the chemo drug that I will be having and where the radiotherapy is targeting means that I definitely will have early menopause. So I was offered the opportunity to speak with the fertility specialist and I did even though I wasn’t sure I wanted to. The reality is that I don’t know if I want children ever, I certainly don’t right now. For the most part I find children quite annoying and whilst I think babies are cute, they certainly don’t make my heart or my uterus skip a beat. But, I didn’t think I would have to decide at 29 what I may or may not want to do at 39 (or whenever) and all of a sudden I’m just supposed to make all these huge fertility decisions about something I don’t even know I want!? Now, the harsh reality (as anyone who has ever gone through IVF will know) is that the success rate is pretty low for all fertility options but after speaking with the specialist I decided to go for the ovarian tissue preservation, whereby they remove and store the necessary tissue which can then be transplanted back in after being 5 years cancer free. This means that if it did work eggs could be harvested for IVF and that some or complete hormone function may return. I figured if I do nothing I WILL get the menopause so I may as well try something and if it doesn’t work then at least I gave it a shot! So incredibly lucky to be in a position to make such choices and to have the #nhs which means I get offered free healthcare which goes way beyond simply making me better but aims to improve my quality of life!
Up until now I have had 2 CT scans, 2 MRI scans and 1 internal MRI scan (which was as horrendous as it sounds) but last Monday I had my first PET-CT scan. It wasn’t so dissimilar to having an MRI or CT in that they insert a cannula into your hand, but instead or giving you contrast medium (like in a CT) or buscopan (muscle relaxant like in an MRI) you are given a radioactive drug. You then have to lie completely still (not even reading or talking is allowed) for an hour before going into the scanner. The machine itself feels more like an MRI, in that you go right into it. However, it works more like a CT in that uses X-rays to take images. The radioactive drug works by showing up areas of the body where cells are more active than normal. This combined with the images gives a clearer picture of where any cancer cells are and/or if they have spread anywhere else.
Scans can feel quite claustrophobic especially when you are in it for a long time (a couple of mine have been about 45 mins long) and the process can be quite stressful making it difficult to stay still. When you move, the image quality is affected meaning they may have to do them again which means even longer in the scanner! So I have developed some coping mechanisms for all those hours in the scanners…I like to close my eyes (so I can’t see the confined space) and do some mindfulness exercises and yoga nidra; counting my inhalations and exhalations and bringing awareness to each part of my body in turn. This turns what could be quite a stressful situation into an opportunity for some relaxation and it definitely works for me!
Up until now I have been very quiet about my situation, only telling my family and a few friends because for the most part I am a pretty private person and because I don’t much like being the patient. However, as a health care professional I feel passionate about health promotion and disease prevention so I have decided to share my story…here goes… several months ago I was diagnosed with cervical cancer and after a long list of investigations, in January I had surgery to remove the tumour. This involved having my entire cervix removed along with 28 lymph nodes. Unfortunately, this is not the end of my journey because although the tumour was completely removed, cancer has spread to my lymph nodes, so I will be having chemoradiation to try and blitz any remaining cancer cells.
I have decide to speak out about my experience for a number of reasons, primarily because I think sharing stories in this way has the power to help and inform. I have been inspired to do so by friends and strangers who have chosen to speak frankly about their own experiences with mental illness, long term conditions and cancer. Cervical cancer is the most common type of cancer in women aged 35 and everyday 9 women in the UK are diagnosed with it, so I’m by no means alone but there is a relatively small social media presence (in comparison with other common cancers). Hopefully, I will be able to offer some useful information as well as personal experience and if that helps 1 person then it will be worth it.
I apologise if reading this has upset anyone and I appreciate that cancer is a very emotive topic for many so if anyone does not want to read about this I promise I won’t be in the slightest bit offended if you chose to unfollow me 😘
Finally, I have been inundated with flowers and cards which I am SO grateful for. However if anyone would like to do something for me from this point on can I request that you
Attend your cervical screening appointment (or bowel, breast or prostate)
Get any lumps, bumps or persistent symptoms checked out by your GP