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!
2 days ago I met with my new oncologist and nurse specialist – 6th doctor, 3rd oncologist, 3rd hospital and 4th nurse specialist (I swear I’m not a fussy patient, they just keep referring me)! My treatment will take place over 5 weeks starting 29th March and will consist of 25x external radiation treatments (5 days per week) and 5x cisplatin chemotherapy treatments (1x per week). Fortunately because the tumour was completely removed I don’t need to have internal radiation/brachytherapy (it sounds fucking horrific)! The doctor went over all the side effects and I signed consent forms etc, it wasn’t particularly new information as I have had plenty of time to do my research and the previous oncologists talked me through most of it before but it was kind of overwhelming now that it is actually happening.
Radiotherapy is usually given as the main treatment for cervical cancer (that requires more than a surgical approach). It is often given in combination with chemotherapy because chemotherapy makes the cervical cells more sensitive to the effects of the radiotherapy, thus making it more effective. This type of treatment is usually called chemoradiation.
I’ll start with the radiotherapy…Radiotherapy uses high-energy rays, usually x-rays and similar rays (such as electrons) to destroy cancer cells in the area that’s being treated. Normal cells can also be damaged by radiotherapy. Normal cells can usually repair themselves, but cancer cells can’t. Radiotherapy is carefully planned so that it avoids as much healthy tissue as possible. However, there will always be some healthy tissue that’s affected by the treatment and this will cause side effects. Unfortunately in pelvic radiotherapy, rather a lot of healthy tissue is affected resulting in a number of short and long term side effects. The most common short-term effects are; bladder and bowel changes (urinary frequency and urgency, radiation cystitis, haematuria (blood in urine) and diarrhoea and urgency etc.), fatigue and effects on the skin (radiation burn, loss of hair in area being treated). Many people experience these symptoms only during and for a short while after treatment, however for some the bladder and bowel changes can be permenant. Additionally, pelvic radiotherapy causes infertility (menopause and damage to uterus) and vaginal stenosis (narrowing). It can also cause long-term damage to the bones (osteoarthritis). FUN!
Cisplatin chemotherapy, is as the name suggests a platinum based drug. It is given intravenously along with lots of fluids as it can cause kidney damage. It does not cause hair loss, but like most chemotherapy drugs often causes nausea and vomiting. It increases risk of infection (because it can reduce the number of white blood cells in your blood) and can cause anaemia and increased brusing/bleeding (due to reduced red blood cells and platelets in the blood). It often causes loss of appetite and changes in taste as well as fatigue. It can also cause hearing loss, in fact the doctor told me many women are not able to complete the full course because of hearing loss (this can be permenent if not dealt with). It can also cause infertility.
These all sound pretty grim, and some of them I will definitely get, but everyone reacts to treatment differently so there is no way of knowing just how awful I am going to feel until I get there. The good news is that there are lots of things that I can do to help manage any symptoms that arise. I can follow the advise about skin care and mouth care, I can follow a low-fibre diet, drink lots of water and try to cut out/down on stimulants such as caffeine and alcohol. I can go for walks and do yoga to keep my bones, heart and mind healthy. I can follow the advice of the medics, research for myself things that may help and not put too much pressure on myself. The best news was that I have to try not to lose weight which means I have been given genuine medical advice to stuff my face! 😂 Had my planning (CT) scan today and am now the proud owner of my first tattoos (4 little dots to help them get me in the right position for radiotherapy (see image)).
Radiotherapy (including info on internal radiation/brachytherapy) – https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/radiotherapy
Long-term effects of pelvic radiotherapy – Macmillan have a great patient info booklet on this (and lots of other topics) which you can order for free from this website: https://be.macmillan.org.uk/be/s-605-radiotherapy.aspx
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