The Maggie’s centre is a one stop shop of support run by professionals offering practical and emotional support - Louise Hassall

Louise Hassall, Christie patient and Maggie’s volunteer

Louise Hassall

In 2010, at the age of 37, I was diagnosed with cervical cancer. Nothing can prepare you for what is about to happen to you, your family and your friends both physically and psychologically.

Sometimes all I want is to sit in a calm and friendly environment with people that understand and maybe not even talk about cancer, but to know others around me feel some or the same emotions that I do.

I also want to know that my loved ones have the opportunity to seek refuge in a place that is comfortable, safe and with people who will understand. Often these services are available but can be scattered around and are not always easily accessible at a time when they are required. 

When I found out that a new centre called Maggie’s would be opening I was intrigued as to how this would complement the already great services that The Christie offer. I wanted to know how this would impact me and other patients and how my loved ones may benefit too.

I was therefore excited to be given the opportunity back in the winter to learn more about Maggie’s, meet the centre manager Sinead Collins and see the new building that was just last week opened by Her Royal Highness the Duchess of Cornwall.

On a bitterly cold and rainy Manchester day I met with Sinead, the centre manager, donned work boots, gloves, a high visibility vest, glasses and a hard hat and was taken to see the building in progress. Sinead explained each room and how the finished building would look.

Despite the weather and the unfinished rooms I could already feel the calm and peace that this building holds with much of this down to the thoughtful layout and space. The long area through the centre of the building, and the ability to see an exit or the outside no matter where you are, put me at ease and added to the feeling of being relaxed and calm.

With warming fires and a big kitchen table to encourage a meeting place for those dropping in, it will certainly make for a welcoming experience from the moment you walk through the door.  

The centre is a one stop shop of support run by professionals offering practical and emotional support without the need for an appointment, which is important as you can’t always predict when and what support you need, and in my experience if you aren’t able to get the help immediately you often don’t go back.

I felt like it was a haven away from the hospital despite being a stone’s throw away and a great space to go by yourself or with those who you are with, to just sit with a cup of tea.

I couldn’t help but compare my needs throughout the last six years and the services that will be on offer at the Maggie’s Centre.

In the past my husband and I have come out of appointments often having heard bad news and we’ve had nowhere other than a public waiting area, corridor or the car to digest the information - and that can add to your distress. The opportunity to now have somewhere to go that is on the grounds of the hospital will be a huge help and make a big difference.

During the hours of waiting between appointments and chemotherapy where a patient wanders around the hospital or the local area, I and others will be available at the Maggie’s centre to discuss nutrition or to take a class on managing stress, creative writing or an exercise class such as yoga, tai chi or walking. Being able to take your time drinking tea or just sitting serenely without the time constraints you can feel in a café or other public place will add to an improved sense of calmness, and for those who love gardening or find it therapeutic, there is a garden to enjoy and the opportunity to help tend it.

Importantly, the service is available to anyone affected with cancer at any stage, and this includes family and friends who will be made to feel welcome and their emotional needs met too. During many of my operations and procedures my husband pounded the streets of Didsbury, but now he will now have the option to go to Maggie’s where he can chat to others in a warm and welcoming environment and benefit from the services on offer. Knowing that this is available to him already makes me feel better. I believe that the cancer journey can be harder on those supporting you, so Maggie’s will be peace of mind to me and an additional support network to Steve.

The Christie is an excellent hospital, with fantastic staff that do a brilliant job at offering support and services, but the addition of the Maggie’s Centre will add value to my experience and wellbeing as a patient and to all patients, so I am looking forward to using the centre and offering my time to help as a volunteer.

I had to try and find the very best cutting edge treatments that were being trialled - Diane Brooks

Diane Brooks - Christie Phase 1 Clinical Trials Patient

Diane Brooks

I became a patient at The Christie over 14 years ago when I was diagnosed with breast cancer at the age of 36. It wasn’t unexpected as I had a strong family history of the disease and soon after I discovered that it was a genetic fault and I was in fact a BRCA2 carrier.

Breast cancer was always part of my family and that’s why I was always interested in being a part of the research and learning aspect of my disease. I knew it could be a huge game-changer in my family’s future health.

Following surgery, chemotherapy and radiotherapy I remained cancer free until the summer of 2008 when it returned. It was a day I had always dreaded but somehow knew would come, as my cancer was aggressive and I knew from watching my mum struggle, it was going to try and beat me too.  

Once I had come to terms with the fact that I wasn’t going to be cured, I set about trying to ‘live’ with my particular type of disease. Always thinking about the lack of understanding and choices of treatment my mum was probably faced with, I had to try and find the very best cutting edge treatments that were being trialled. Thankfully being a Christie patient meant that I was in the right place.

I was lucky enough to be part of trials involving existing chemotherapy treatments that were being aimed at my particular type of disease, but it was in September 2010 that I embarked on my first Phase 1 Trial for an unlicensed drug. I thought it would be scary but in fact it was such a relief, despite the fact that I didn’t know how it was going to effect me, or whether in fact it was going to give me any quality of life. 

I recognised that I was very lucky to be accepted onto the trial and that it was available to me at The Christie. I had done as much homework as possible on my disease and just felt that this was the right treatment for me to try at this time. I was so lucky that it did in fact give me three years of being able to get on with my busy life with my husband, four children and my career. 

To know that you are contributing towards future cancer treatments that can have far reaching effects on others, gives me such a worthwhile feeling, and of course, I am also keen to invest in my family’s future, as they are all going to be affected by this hereditary disease in years to come. I want the doctors to learn as much as possible about our hereditary disease whilst I am alive, so I am always happy to put myself forward for appropriate drug trials in order for them to do their invaluable work.

Being a clinical trials patient has it’s ups and downs and can be intense at times, but the Phase 1 team is expert at guiding me through and helping me manage side effects, at the same time as gathering all their important data which will form part of future cancer treatments – it’s such a privilege to be part of something that is so much bigger than just me. I continue to marvel at how fast things are moving forward in research, and even though I am a small part of it by trying these new treatments, it gives me hope for the future.

I wouldn’t hesitate in recommending a patient to speak to their oncologist about clinical trials - “You don’t get if you don’t ask” is always my motto. However, you do have to fit certain criteria for each trial so it is never a done deal and you have to be realistic. It is important to follow strict guidelines with new drugs, but I have always felt in safe hands with the Phase 1 Team at The Christie, who will spend as much time as is needed to talk me through every step of the protocol attached to each trial.  We always refer to them as our “hospital family” and we have got to know them very well over the years. In fact it says a lot when I have been there longer than a lot of the staff – they must be doing something right!  

I will be celebrating my 51st birthday next month and yes, I am still a Phase 1 patient at The Christie, trying something new, with my husband, family and “hospital family” holding my hand and helping me through, but most of all I am still “living” with my inherited disease, and I continue to hope that many people in the future will benefit from the knowledge gained from research and clinical trials that I have been so very lucky to be a part of at The Christie.

The Christie’s NIHR Clinical Research Facility is a large, high quality, dedicated clinical research environment where our patients can participate in complex and early phase clinical trials. Around 400 clinical trials may be taking place at any one time. In 2016, the NIHR is celebrating ten years of funding and supporting clinical research in the NHS.  

I’ve really valued the emotional support from everyone around me, especially the team at The Christie - Katie Stephenson

Katie Stephenson – Parotid Gland Cancer Patient (Mammary Analogue Secretory Carcinoma)

Katie Stephenson

I’m 30 years old and November 2015 marks four years since I began treatment for parotid gland cancer. 

I live in Chorley, Lancashire and I work in Public Relations for the NHS. I remember the moment I found my first tumour like it was yesterday. It was July 2011 and I was having a lovely lunch in a beer garden in Lancaster (fish and chips if you were wondering!) when I felt a lump on my jaw. Always the hypochondriac, I dramatically said to my friend, "feel this lump, it must be a tumour!"

The lump didn’t go away and after weeks of poking and prodding by various doctors and a few courses of antibiotics in case it was a cyst, I had an ultrasound. I’d done a lot of research by this point and pretty much knew every eventual outcome so when he told me it was a solid mass I was as prepared as I could be to hear that news. After a fine needle aspiration, which basically meant a doctor stuck a tiny needle into the lump and drew some fluid from it to test, the results were inconclusive so I was delivered the news that I’d need a major operation to the side of my face to remove the lump (most likely a tumour) and half of my parotid gland. 

The parotid is part of a family of three salivary glands and it sits just below your ear. Again, I’d done my research and found that salivary gland cancer is rare with approximately 550 cases being diagnosed each year, most commonly in people over 50. The exact cause of this cancer is unknown and in most cases, tumours in salivary glands are benign. 

With any surgery there were also side effects and with mine these included facial paralysis, numbness and problems with the salivary function. Although these were worrying to me, I was only 26 at the time so my main concern was about the gigantic scar I’d have running down my face.

I had my surgery done in Preston and I cried the first time I looked in a mirror. I’m not an overly vain person (my friends might correct me on this!) but I had 40 stitches down the side of my ear and down my neck, a huge dent in my face where part of the gland had been removed and little to no movement in half of my lip. 

Katie post surgery

Despite this I waited patiently for the results of the tests…..I waited and I waited….20 weeks later I was delivered the news that it was a malignant tumour however it had been removed with clear margins which meant that they believed they had got it all. The reason for the delay was that it was a newly described tumour and not many labs had seen one before. Eventually I was given its definitive name; Mammary Analogue Secretory Carcinoma.

Almost a year to the day of finding the original lump, I found, and had removed a second tumour. Luckily this one was a lot closer to the surface and the surgery was nowhere near as invasive. At the same time as this surgery I received Botox injections to my face as I’d developed a relatively rare side effect of the surgery known as Frey’s Syndrome. This is basically a mutation of your salivary glands so instead of your mouth watering on the inside, I was getting a moist cheek – not a good look when you’re stood in front of a tasty buffet and your cheek starts watering!

Following the removal of the second tumour I was referred to The Christie to discuss my treatment options. As it was a relatively recently named tumour there was some uncertainty as to what the treatment should be. At the initial consultation we discussed the different options available to me; further surgery to remove the rest of the gland or a course of radiotherapy, both of which carried further risks and complications. In the end we decided that I would be a “watch and wait” patient, meaning I’d have scans and check-ups instead of treatment. 

This course of action didn’t initially sit well with me. I’d really struggled emotionally during the wait for my initial results and I didn’t think I had the strength and resilience to do it again, but with the support of my consultant we decided to go ahead. I now have bi-annual MRIs to my head and neck and I visit The Christie four times a year for check-ups. I won’t lie, sometimes it’s really hard to just sit back and wait. I check the area every day and I’m just waiting for the time I feel another lump. I did have a scare last year but thankfully it was just scar tissue from my original surgery on the move.

Throughout my experience I decided to document this by blogging (www.apainintheparotid.wordpress.com). I struggled to find a lot of UK based information about the condition so thought I’d share my experiences with anyone else who was going through this too. I post pictures, tips and updates and I find writing about my day, hospital appointments, scar progress (and the occasional whinge) extremely therapeutic.

I’ve also really valued the emotional support from everyone around me, especially the team at The Christie – shout out to Professor Slevin! Whilst I might not be having visible treatment, people should never underestimate the emotional impact a cancer diagnosis can have and the compassion and care from the team at The Christie has been second to none.

After my surgery I was left scarred, unable to smile on one side of my face and feeling very self-conscious. I became extremely anxious and pretty much ate my feelings, putting on over six stone in weight in the process. Over the last 18 months I have really seen an improvement emotionally, and finally managed to get some focus back in my life. I even went back to university to study for a postgraduate qualification, something I could not have imagined doing three years ago. 

If I was to give one piece of advice to anyone reading this who is going through something similar, it would be to never underestimate the power of emotional support. I know all too well how easy it is to retreat and want to deal with it on your own, but please just talk to someone. I’m a very independent person and leaning on others for support didn’t come easily to me but I learnt that this doesn’t make you any less strong or unable to cope and, without that support, I wouldn’t be the person I am today. I have a much brighter outlook on life, my confidence is coming back and I’ve started to shift some of the weight that I’d put on. I’m still a way from eventual discharge (pending no new lumps – fingers crossed!) and visiting The Christie has just become part of my life routine, but without the fantastic support of the team at The Christie, my friends and my family I don’t think I would have come through this so strongly.