Rosie SchofieldLeave a comment

Nausea and syringe drivers

The last few days have been pretty rough as I have been really suffering with nausea. Had my chemo on Wednesday and felt ok, woke up on Thursday, chundered and felt so sick I couldn’t eat or drink anything.

I was expecting to have a review after my radiotherapy, but there was some mix up with it so I didn’t get my review and was sent to the Acute Oncology Service instead (kind of like A&E/AMU for people with cancer). The doctor I saw there was concerned that I was dehydrated and gave me some fluids. She also said she wanted me to have a syringe driver…I can’t help but relate a syringe driver with end of life care but the doctor explained that whilst I am being sick the absorption of oral medications is erratic and delivering it through a syringe driver offers more control. So after several hours, they sent me home with a syringe driver delivering ondansetron and metoclopramide. Went back yesterday to have it refilled and a district nurse is going to come and do it today and tomorrow. So I’m spending the hottest day of the year so far stuck in waiting for a nurse.

A syringe driver is exactly what it sounds like…the prescribed medication is drawn up into the syringe which is then put into a pump (or driver). The nurse sets the rate at which the medication will be administered and it is delivered through a small needle which sits just under your skin, so you are getting a continuous subcutaneous (under the skin) infusion. It is usually changed every 12-24 hours depending on the care setting and the medication.

I still feel pretty shitty, the drugs have relieved the symptoms slightly so that I am able to eat and drink a bit but I still feel sick constantly. I am still eating loads of ice lollies and also lots of sparkling water. I noramlly drink about 3 litres of water a day but I just can’t at the moment. Hopefully this will ease of the next couple of days and I really hope they can come up with a more permanent solution than the syringe driver. The nurse spent ages trying to find me a nice bag to put it in…I’m not sure the one she picked is exactly my style but I appreciate the effort! I definitely feel more self conscious with it, because up until now I haven’t had to deal with looking like a sick person (my treatment isn’t giving me any externally visible side effects), whereas with the syringe driver people can see the bag and tubing.

Black Juzo lymphoedema compression tights

Rosie Schofield2 Comments

Lymphoedema – what it is, prevention and management

Today my super sexy lymphoedema prevention tights arrived so I thought I would write a bit about lymphoedema.

The lymphatic system is part of the body’s immune system, helping to protect from diesease and infection. The lymphatic system is made up of lots of lymph nodes, lymph vessels and lymph fluid. Lymph fluid flows through lymph vessels that connect lymph nodes. Lymph nodes essentially act as a filter, they contain white blood cells (lymphocytes), which attack and break down bacteria, viruses and damaged cells. Any destroyed bacteria or waste products are then transported via the lymph fluid to the bloodstream to be excreted. Sometimes lymph nodes trap bacteria or viruses that take longer to destroy and when this happens they can become swollen and tender.

Lymphoedema developes when blockage or damage prevents lymph fluid from passing through the vessels or lymph nodes and the fluid cannot drain away in the normal way. The fluid then builds up between body tissues and causes swelling. Lymphoedema is a chronic swelling, meaning it cannot be cured because the causes can’t be reversed. However, for most people the swelling can be reduced, particularly when it’s diagnosed early.

In cancer patients lymphoedema can be caused by cancer itself that has begun or spread to the lymph nodes or that presses on the lymph vessels, radiotherapy treatment or surgery to remove lymph nodes.

I had 28 pelvic lymph nodes removed, spread to lymph nodes and will be having radiotherapy which means that I am at high risk of developing lymphoedema. Most hospitals in the UK take a curative approach to lymphoedema, but I was super lucky to be referred to The Royal Marsden, the worlds first hospital dedicated to cancer, who just so happen to take a preventative approach to lymphoedema. So, I had an appointment with a specialist physiotherapist who gave me some guidance on how I could help prevent developing lymphoedema and measured me up for some support tights which work much like compression (anti-embolism/DVT) stockings but also apply pressure to lymph nodes and vessels encouraging movement of fluid. I have to wear the tights everyday for about 6 months and I will have to take care of my legs and feet indefinitely. It means making some changes; no more walking around bare foot 🙁 and I have to moisturise regularly and I’m not supposed to run or do any high energy/high impact exercise for a while. Of course there is no guarantee I won’t develop lymphoedema anyway, but at least I will know I did everything I could to prevent it.

For anyone at risk or experiencing lymphoedema or for anyone supporting someone with lymphoedema it is well worth taking your time to understand what it is, what the risk factors are and what you can do to prevent/manage it.

Lymphoedema links:

http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/lymphoedema

http://www.lymphoedema.org/index.php/information-and-support/what-is-lymphoedema

http://www.nhs.uk/Conditions/Lymphoedema/Pages/Introduction.aspx

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: