Meet Lucy! - a pin badge to be worn by those living with incurable cancer who welcome a friendly hello from others on the same journey.
We are two friends who met through the amazing South West Homecare team of Lloyds Pharmacy. Despite our age difference, we have many things in common! We share the same name, had our initial diagnosis of colo-rectal cancer within two weeks of each other and have the same incurable prognosis. We have also shared the same oncologist and treatment programmes during our cancer journey. We have tried to support each other on this difficult path.
I have always been a busy person. Getting ill forced me to slow down. Sitting still for treatment and recuperation after operations was something I never could have imagined myself doing, let alone tolerating for any length of time. Being patient with my new self is something I have had to learn and has not been easy! I am married to Eric who is my tower of strength and I have two incredibly brave daughters. My youngest daughter is about to take her A 'levels and my eldest is at University.Diagnosis:
Since my diagnosis in February 2020 aged 45, we were always hopeful that my cancer was curable. In January 2022 an MRI showed I was clear but just four months later we were informed that the cancer had returned in my liver, with new tumours in my lungs and lymph node. My life expectancy was 6 months to a year, possibly much less. I was now only eligible for palliative treatment in the form of Targeted Therapy which I started immediately. Initially my cancer responded well, until a further scan confirmed new growth. I started another new treatment regime but five days later, due to severe side effects, I was given no choice but to pause treatment. We looked into trials but I was not a match.Quality over Quantity:
At the end of October I made a very difficult decision to choose quality of life over quantity and did not restart treatment. I weighed up the debilitating side effects, plus the risk of infection versus feeling relatively healthy. I want to enjoy the time I have left. My family were all in agreement and I have not once regretted my decision. I do not feel as though I have given up on life, choosing to die - fate has already chosen that and I have fought with everything I have for three years. I see many posts on social media about how fighting and surviving cancer is down to mindset and diet. At the end of the day (and my medical team would reiterate this), positivity can get you through treatment, but surviving cancer is purely down to luck! Given my prognosis, I was convinced that I would not see Christmas, but as I write this it is now March!Current situation:
In early February 2023, I started experiencing agonising spasms around my liver and lung area which made it very difficult to breathe. On the days leading up to this I had been walking three miles a day, but this sudden onset followed by a visit to A&E was so frightening, I thought my end was just days away. I was urgently referred to the most amazing Doctor at St Michael's Hospice, Herefordshire who prescribed the steroid Prednisolone. I have just returned from a week away where I managed to ski, swim in a Loch which was just 6 degrees C and walk 5 miles.Getting through each day:
Three major operations and a stoma reversal (especially during Covid), plus endless rounds of chemo is tougher than anyone can ever imagine. However, the most painful part of this journey has been witnessing what my family is having to see and deal with. That and knowing that I will not be here for them has just about broken my heart.I am often asked how I manage to keep going knowing my end is coming. My friends and family have been simply amazing. I focus on getting up each day, making the best with the health and fitness I have left and let the rest of the day follow. I have always been a planner and an organiser, so filling my days has been easy. I have just about completed my death admin, I have organised my funeral, made many memory boxes and keep sakes for my daughters, organised photos, bought presents for family and friends, written letters, made recordings, deleted fourteen years of emails and am working on emptying my wardrobe! I also try to suppress my sadness and anger so that it does not impinge on the life I have left which allows me to fully enjoy my time with my family and friends. I will admit, I cry daily.Raising awareness:
I have found this is to be hugely beneficial to my mental health and thanks to such generous friends we have also raised some funds. Initially I set up a brownie making business with a proportion of the selling price being donated to Bowel Cancer UK. My sister Nicky formed a cycling team called 'Luce Wheels' who took part in the 107 mile Tour de Mon around Anglesey last summer and raised £7,700. For my final birthday last year I posted a fundraiser on social media where I reminded friends of the signs and symptoms of bowel cancer and to raise a glass to celebrate my special day. It raised £3,800 in less than 24hrs sitting in a very comfortable chair! Nicky trained for a year for 'Luce Wheels', I felt I should have at least been sat on a very uncomfortable saddle! Nicky and I have chatted to Dot Davies on BBC Radio Wales twice. If I can save just one family from having to endure what we have these last three years then my time has been well spent.Advice to All:
If you are on this website, you are likely to be a cancer patient on a similar journey to ours. If you are reading this out of interest or have concerns, our advice is to listen to your body. Do not ignore a worrying feeling that something isn't right - the one you may put to the back of your mind during the day, but creeps into your thoughts at night.As for our experiences of understanding the signs of bowel cancer, please be aware that the signs and symptoms do not all come at once and in a short space of time. I like many bowel cancer patients never once spotted blood in my stools or had any significant weight loss. I was tired but I was also a busy working mum. My insistence to get a colonoscopy only came after a holiday with family, who mentioned that I was going to the loo more than usual. Slow changes over many years led to doctors believing that I had IBS, piles, menopause and food intolerances etc. If you have concerns:
- start a daily diary, do not wait for symptoms to get worse;
- be persistent with your GP and get a second opinion if you are not happy
- never feel like an inconvenience.
|Diagnosed with metastatic rectal cancer (liver). Anterior resection to remove tumour, temporary stoma
|CT scan confirms cancer has metastasised to liver
|4 cycles of pre-operative (liver resection) chemotherapy Oxaliplatin and Capecitabine/5 FU
|Non-anatomical resection of 3 liver metastases
|4 cycles of post-operative chemotherapy Oxaliplatin and Capecitabine/5FU
|Recurrent disease in the liver. 4 cycles of pre-operative chemotherapy Irinotecan and Capecitabine
|Second liver resection
|4 cycles of post-operative chemotherapy Irinotecan and Capecitabine. Clear MRI scan
|PET scan confirms multiple tumours in liver, lungs and 1 lymph node. Cancer deemed to be incurable. Life expectancy of 6months-1 year but possibly much less)
|Targeted immunotherapy of Cetuximab and Encorafenib (I have the BRAF V600E gene mutation)
|PET scan confirms tumours have shrunk by up to 60% but also shows possible new activity
|PET scan confirms new tumours evident in liver, lungs and lymph node.
|Chemotherapy of Bevacizumab and Lonsurf. Very severe side effects so treatment paused after 5 days. Tissue tested for phase 2 trial at The Royal Marsden Hospital and research conducted on a phase 1 trial. Neither viable.Decision made to end treatment
|Referred to palliative care team
On 13th May 2023, Lucy sadly died peacefully at home in the company of her family
I am 61 years old and live with my husband Paul near Cheltenham, Gloucestershire. We have two adult daughters who live and work in London.I met Paul at school and we married in 1986. I qualified as a Solicitor the following year and worked for ten years specialising in Family and Criminal Law. I stopped work in 1996 after the birth of my second daughter, which coincided with a move to our present home in Gloucestershire.A long period at home raising the children followed. I was a Listening Volunteer with the Samaritans for ten years during this time. I also ran workshops from home for people to make and fire raku ceramics.
In 2015 I went back to my early working days and retrained as a Family Mediator. I loved this demanding but rewarding work at a busy local mediation practice. Sadly my work was cut short with my diagnosis in February 2020.I had been experiencing abdominal pains only since November 2019. I had no other common symptoms of bowel cancer at that time. I went to the doctor after a couple of weeks and she suggested we monitor the situation. In the following two weeks I began to lose weight quite suddenly and went back to the GP who immediately referred me to the hospital. There was a short delay due to my own commitments but I had a colonoscopy in mid February and was told at the end of the procedure that there was a large tumour in my colon which was very likely to be cancerous. I had the operation to remove the tumour four days later! I was referred to the oncologist for what my surgeon suggested at the time to be 'mop up' chemotherapy. In the event, a very visible lymph node in my clavicle that felt the size of a satsuma confirmed that my cancer had already metastasised and we were told that it was no longer deemed to be curable. I started the first round of chemotherapy two weeks later and have been on chemotherapy or targeted immunotherapy continuously ever since!Following this prognosis I made the very difficult decision to retire from work to reduce stress. Fortunately my husband also ended his working life at this point and we are loving our retirement together!Since August 2021 I have been under the amazing care of Dr Naureen Starling at The Royal Marsden Hospital (Chelsea). Recently, Dr Irene Chong has been responsible for the radiotherapy treatment. Their care and support has been exceptional and I remain hugely grateful to them and all the staff at RMH.The approach Paul and I take is that we must live life to the full. No one knows what lies ahead but that is true for everyone. We feel it is so important to strive to live with the diagnosis rather than allowing it to control our lives. We enjoy regular short holidays in between treatments and love spending time with the family. A daily walk together or just some fresh air in the garden is always very restorative!Of course there are days when I struggle - particularly when I dare think of what lies ahead for my family or when my body feels the impact of three years of continuous treatments. Everyone's body reacts differently to the various drugs and the side effects are impossible to predict. I have been very lucky as my body has, so far, largely tolerated all treatments. Varying side effects for me have included neuropathy, a very unpredictable bowel, thinning/ loss of hair (luckily only since Jan '23) the emotional effect of steroids and the constant and often extreme fatigue experienced by many on this journey.There are also so many good days, often spent with friends or family who have been there for me every step of the way. My husband has been quite unbelievable in his strength and support that have never wavered throughout the whole journey. Similarly my daughters have been amazing and continue to be exceptionally supportive and encouraging all of which helps to maintain positivity and even normality. Every day I am grateful for so many things, not least the fact I am still here and able to enjoy life. My daily mantra remains onwards and upwards!
|Colonoscopy confirms colon cancer
|Right hemicolectomy - 30 nearby lymph nodes clear
|PET scan identifies tumours in lymph nodes in neck, chest and abdomen. Cancer deemed to be incurable
|4 rounds of chemotherapy - Oxaliplatin, Capecitabine and Bevacizumab
|3 weekly chemotherapy of Bevacizumab and Capecitabine (tablets)
|Hemithyroidectomy (nodule proved to be benign)
|Tumours in neck and chest reactivate after a maintained complete metabolic response for 22 months
|Targeted immunotherapy of Cetuximab and Encorafineb (I too have the BRAF 600V gene mutation)
|PET scan confirms active growth in both sites
|5 sessions of palliative intensity modulated radiotherapy on neck
|Chemotherapy of FOLFIRI plus Bevacizumab
|50th round of chemotherapy treatments!
|PET scan shows no active growth in neck but marginal increase in some of the mediastinal lymph nodes. 5 sessions of palliative intensity modulated radiotherapy on chest.
|CT/PET scans show disease progression
|First Cycle of FOLFOX at Royal Marsden Hospital
|Bronchoscopy at Royal Brompton Hospital. Cancer infiltrating left lung. While on holiday in the south of France treated for sepsis. Spent 12 days in Cannes hospital, including 5 days in ICU
|All cancer treatment suspended while recovering from sepsis. Loss of voice due to nerve damage paralysing vocal cord
|First course of immunotherapy with Pembrolizumab following Next Generation Sequencing on tumour finding the Tumour Mutation Burden was high. Elective procedures at Royal Marsden Hospital resulting in 3 week stay due to infection, treated with course of several antibiotics. Deteriorating disease in left lung, leading to permanent chest drain
I was very lucky to have had my initial surgery days before COVID hit. Thousands were not so lucky and as a result the number of people living with incurable cancer has sadly increased significantly.I also recognise that I am incredibly fortunate to have the benefit of private medical insurance. I know that unfortunately not all of the treatments I have had are available to everyone. I very much hope that whatever your situation or circumstance you are receiving good care. If not, do not be afraid to get a second opinion.
In late 2022, Lucy H was on holiday and could not stop noticing people appearing carefree and enjoying the holiday spirit. She and her husband were spending most of their time holding back tears trying to make the most of what they thought to be their last holiday together.Like many living with incurable cancer, outwardly Lucy looked perfectly healthy. Inwardly, she felt very isolated and wished that there was a bridge to connect her to anyone else in the room who may be in the same situation. Statistically it is likely that there were others in the same situation but there may be no visible sign that someone is living with incurable cancer and may be struggling.Lucy thought that something could be worn which would allow others in the same situation to discreetly identify one another which could initiate a chat. We know that many people on this journey find it incredibly lonely, they may not have any personal support or perhaps they don’t want to burden family and friends.We have therefore designed a Lucy pin badge which we believe is simple, distinctive and easily recognisable. The L in the design recognises the loneliness that can be so difficult for many and is also the initial of our name. Lucy means 'light' as symbolised by the sun which naturally also spreads warmth.If you are living with incurable cancer and welcome a friendly hello from others on the same path and want to share our vision by wearing a Lucy, please call Macmillan Supporter Care Team on 0300 1000 200 (Monday to Friday 0900-1700 and Saturday 0900-1300).We hope that you will wear your Lucy with pride. A warm hello from someone who has an understanding of how you may be feeling may help you both.