Rosie SchofieldLeave a comment

Cancer and mental health

Once again, I’ve proven that consistency is not my strong point. I had planned to write another blog post some weeks back following my one year post-treatment appointment. However events took a bit of an unexpected turn…

The last few months have been really tough and the last few weeks have been hell. This appointment had been a long time coming; I had a blood test and a CT scan in preparation and was hoping to be given the news that one year on from completing treatment I was cancer free. Understandably, in the run up to this appointment I have been incredibly anxious, but my anxiety started to really get out of hand; I was vomiting most mornings, had a resting heart rate of over 90 consistently, high blood pressure, struggling to sleep, flashbacks, experiencing social anxiety and difficulty leaving the house, lack of motivation, intense food cravings and binge eating, constantly feeling overwhelmed, tired and on the brink of tears. All the while, I was studying, sitting an exam and going into placement full time and generally trying to convince the world and myself that I was fine.

Three weeks ago I had my appointment and instead of being told good news, I was told that my CT scan hadn’t been reviewed and that on examination, there was a red area on my cervix that wasn’t there previously which would require further investigation…holy fuck! After a brief meltdown (which mainly involved me ugly crying on my lovely Cancer Nurse Specialist’s shoulder) we discussed my anxiety. Basically, what I am experiencing is Post Traumatic Stress Disorder. It feels odd even saying that because of course, we usually relate PTSD to people who work in emergency services or the military – who witness awful things daily, or child or adult victims of violent or sexual attacks/abuse, not people who have/had cancer. However, the T in PTSD can actually refer to any traumatic event or experience; one persons PTSD is not necessarily the same as someone elses, and nobody should feel that their trauma is lesser or doesn’t entitle them to feel the way they do…it’s not a competition.

Following that news, I had an MRI and today I met with my previous surgical gynaeoncologist. We discussed why I was there and what the plan was, he said that he would examine me and that if a biopsy was needed it would need to be done under general anaesthetic, not in clinic. Yesterday was leg day at the gym; which was not the wisest choice the day before having to lie with my legs in stirrups for 15 minutes…fortunately though, it was worth it because the red looking area shows no indication of abnormal cells and both the CT and MRI scans look normal. Which means I can officially say I am 1 year cancer free!

Unfortuantely, my mental health is a little more complex and precarious. Just because I have good news now, doesn’t instantly erase the anxiety. I still face years of check ups, scans, blood tests (which involves dealing with my new phobia of being cannulated, following an incident where a nurse pushed a flush through a cannula that wasn’t in my vein) and worry about recurrence everytime my lower back aches or I get a chesty cough. I ended up cutting my placement short because it was just too emotionally exhausting to go in and care for other people during that time and thankfully my placement team were really supportive of that. I have joined a gym in an attempt to help me burn off some excess cortisol (stress hormone). I am also in the process of arranging counselling and cognitive behavioural therapy, because a) I don’t want to feel like this and b) I don’t want to start my nursing career with a lot of my own baggage, that has the potential to affect the care I give other people. Nursing is wonderful, but more stressful than most people can imagine; taking care of yourself is fundamental to being a good nurse.

Ultimately, I am very relieved and pleased that I can officially claim to be cancer free, but I am aware that the scars cancer has left me with are far greater than the visible ones on my belly and that recovery is long, complex and challenging.

Picture of French word Bonjour

Rosie SchofieldLeave a comment

The story so far…

I thought it might be a good idea to post a bit about my story so far. I have stage 1B1 squamous cell cervical cancer with lymph involvement. I was diagnosed in October 2016, following an abnormal cervical screening result (high grade changes/severe dyskaryosis).

I started experiencing symptoms of constant bleeding, lower back pain and urinary frequency at the start of August (retrospectively, the urinary frequency and lower back pain may have started earlier but I put it down to drinking a lot of water and my career in health care respectively). I put off going to the GP for about 5 weeks, but after two normal periods and no change in symptoms I went to see my GP for an overdue cervical screening (smear test).

Following the results I had a colposcopy, where an area of abnormalities was removed and sent off for testing (Large loop excision of the transformation zone (Lletz)). This was done under local anaesthetic. After about two weeks I was asked to go back in and at this point I was given the news that I had cervical cancer, that the tumour was incompletely excised and poorly differentiated which basically means that I had a grade 3 tumour and part of it was still there. At this stage that was all they could really tell me.

Following that, I had a CT and MRI scan, before going back for a further meeting with my consultant and it was great news! He told me that I had stage 1A2 CC and that the scans showed no visible tumour at all and although there was a couple of slightly enlarged lymph nodes it was probably just because of the LLETZ procedure. I was advised that because of the histology report there must still be some microscopic cancer cells present but that they were so small they weren’t showing on the scan so I would need to go for an internal MRI scan and that whilst I would need more treatment it would be surgical and they felt that a fertility sparing option would be best given my age. As such, I had to be referred to The Royal Marsden (a specialist cancer hospital in London).

Following my internal MRI scan I met with my new consultant who specialises in a procedure called a radical trachelectomy, where rather than remove the uterus and cervix as they do in a hysterectomy, they remove the cervix only and insert a stitch where that was (essentially an artificial cervix). This means that it is possible to get pregnant (although slightly harder) and possible to carry a pregnancy (again harder and with greater risk of miscarriage and preterm birth). Any pregnancy following this is considered high risk so would involve increased monitoring and delivery can only be by caesarean section. The consultant told me that I actually had stage 1B1 CC, and that although the tumour was relatively small it had such poor histological features and this meant that a radical trachelectomy was the best option (rather than the less invasive option of a cone biopsy). I was booked in for an Examination Under Anaesthetic (EUA) which involved having an internal examination, a sigmoidoscopy, cystoscopy and hysteroscopy… Ouch, I’m super glad I was asleep! Nothing suspicious was found so they went ahead with the radical trachelectomy and lymph node dissection on 6th January 2017. It was the most physically painful experience of my life to date and I seriously underestimated how debilitating it would be. I was booked in for 3 nights but I recovered well and was determined to get up and moving so they let me go the following afternoon.

Three weeks later I was given the news that although the tumour had been completely excised 2 of the 28 lymph nodes had cancer cells present. So, I was advised that I would need chemotherapy and radiotherapy in order to kill off any remaining cancer cells. Since then I have been referred back to Southampton, where the oncologist suggested the best treatment would be Cisplatin chemotherapy in conjunction with Intensity Modulated Radiotherapy Treatment (IMRT). Unfortunately, at this point in the story they don’t have the facilities to treat cervical cancer with this type of radiotherapy, so the doctor suggested I went back to The Royal Marsden or to the Norfolk and Norwich (as my family home is in Norfolk).

So, I’m back in Norfolk now awaiting an appointment with my new consultant to finalise a treatment plan. I have had an MRI and PET-CT scan both of which look fine, which is great news. The chemoradiation is really just an insurance policy at this stage, it’s possible that I am completely cancer free, but because of the metastases the assumption is that there are some microscopic cancer cells floating around somewhere which need treating before they have the chance to spread anywhere else!

Here are some links to some useful resources which explain some of the technical terms used in my story so far: