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:

Zoe Buckman photo of light cervix

Rosie Schofield2 Comments

Fertility – ovarian tissue cryopreservation

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!

#forevergrateful #cancer #cancersucks #fertility #ovaries #ovariesbeforebrovaries #gynaecologicalcancer

Featured image courtesy of https://www.instagram.com/zoebuckman/

scan-xiety definition image

Rosie SchofieldLeave a comment

PET-CT scans and scanxiety

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!

#petct #scanxiety #cancer#cancersucks #cervicalcancer #cervicalcancerawareness #yoganidra #yogicsleep #mindfulness #copingmechanism

Featured image courtesy of www.cancer.net/blog

shit-o-meter

Rosie Schofield1 Comment

First Post – Fuck I’ve got cancer!

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

  1. Attend your cervical screening appointment (or bowel, breast or prostate)
  2. Get any lumps, bumps or persistent symptoms checked out by your GP
  3. Give up smoking, or
  4. All of the above 😉

Thanks for reading! #cancer #cancersucks #cervicalcancer #cervicalcancerawareness