Tag: Health

Manic to Happy Mondays in SW19, London
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Manic to Happy Mondays in SW19, London

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It was manic Monday at Wimbledon for more than just the epic five set match, which saw Rafa Nadal exit the tournament. As all of Wimbledon was buzzing with the excitement, I was in a mad panic worrying about going to the Marsden to get my scan results and see if the ipi/nivo immunotherapy treatment was working for me. As fellow cancer patients will know the anxiety surrounding scans and results is something that you have to learn to deal with in your own way, it’s not easy and very stressful. The words of advice given to me by Dr Wood, after my first set of scans stuck with me. He told me you have to find your coping mechanism and then get on with your life. Personally, I find keeping myself as distracted and occupied as possible between the scans and results works well plus I am a big fan of yoga and that helps me relax.

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To bring you up to speed, I was finally discharged from the Marsden on July 4 after 3 weeks in hospital. This was after a 5-day mega pulse on high steroid dose that made me feel I was bouncing off the walls. (As someone who already has a lot of energy this wasn’t a good experience) In fact, on the Saturday evening, I had so much energy I was tempted to go and dance it off in Brixton at the Ministry of Sound but didn’t think that would go down so well with the nurses (or David!). The good news was that this finally saw my liver ALT levels come down far enough that I was able to be discharged which as you can imagine I was over the moon. Dave and I left the hospital with a suitcase load of drugs to take home as I had been transferred from taking the drugs intravenously to orally. I was warned that my body would take some time to adjust and if the levels increased I would need to be readmitted. I also had to come to the hospital every morning to have my bloods checked. None of that mattered though as I was so excited to get home and sleep in my own bed and felt on cloud 9.

 

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It was really blissful to be back at home and have some normality back in my life. Even walking to the gym on my own and doing a workout felt so good. I was also excited to go to watch Wimbledon the day after I got home which was a special treat and catch up with family and friends. On Friday my gorgeous girlfriends “the girl squad” had planned a pre-birthday lunch for me and this was an amazing afternoon. At one point, I seriously thought I’d be going from the hospital heels on tottering out of the Marsden.

Friday morning was stressful as I had my scans first both brain MRI and body CT then bloods done before rushing home to get set for the birthday lunch. I didn’t tell anyone about the scans, as I just wanted to enjoy the afternoon and weekend and also have time for David and I to process the results once we received them on Monday. Friday afternoon was such a happy occasion, my two very special friends Liz and Jen plus 10 other girls pulled out all the stops, the venue, company, food, drinks, laughter, presents, games and fun were just the tonic I needed. This was me sober although don’t forget the steroids! It was such a special afternoon that I will always remember, for the 7 hours over lunch we had a blast with some of the lovely friends and family that have helped support me through the last 12 months. I was very spoiled and it was a gorgeous. Huge thank you to all of you who came it is massively appreciated.

 

The weekend was also lovely seeing family then friends who were over from Hong Kong where David and I used to live.

Monday morning arrived all too quickly and I was feeling panicked at the prospect of getting my scan results. Normally when going for scan results I have a gut instinct of how things are going to go. I sometimes find that it is easier to prepare yourself for the worst and then anything better is a bonus. This week I didn’t have a gut instinct how it was going to go and when I woke up I felt calm. This didn’t last though and on arrival at the hospital my mind was all over the place imagining all sorts of scenarios. Luckily David was there to keep me calm.

It was soon time for my appointment and walking into the room I felt sick. I sat down and my doctor was smiling and said your scan results are good with no evidence of any new melanoma spread and the tumour in the brain has also shrunk; this means that the immunotherapy treatment has worked and my immune system has been taught to recognise and fight the cancerous cells. The best way to describe it is that the immunotherapy has stopped / halted the melanoma in its tracks.  For some patients this can be a long-term status whereas for others the cancerous cells find a way of again overcoming the immune system, hence the need for regular monitoring/scans. There is no doubt this is the best news we could have hoped for and I felt a wave of euphoria come over me and felt so happy. This is the best birthday present I could have and I am currently on a high on the shomelanoma rollercoaster.

I want to say a HUGE thank you to all the melanoma medical team, nurses, catering and cleaning team at both Granard House 2 and the Marcus Ward at the Royal Marsden who have looked after me so amazingly well. I feel hugely fortunate to be cared for at this very special hospital.

I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. Unfortunately there currently remains no known cure.

We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:

https://www.justgiving.com/fundraising/shomelanoma

More will come on the next blog about the shomelanoma fundraising and this has kicked off with this month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

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My Extended Stay at Royal Marsden Hospital HQ
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My Extended Stay at Royal Marsden Hospital HQ

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When I checked into the Royal Marsden HQ on June 13, I didn’t for one minute expect to still be here over 2 weeks later and facing my 3rd weekend here; I don’t think my medical team did either. However, as I was told every patient is unique and my liver enzyme levels have stubbornly refused to fall far enough so the steroid dosage has been increased. (Will I soon look and feel like the incredible hulk?) The reactivation of my immune system has been described as akin to slamming your foot down on an accelerator pedal … i.e. difficult to control, as there is no on/off switch. So here I am still in residence at the Marsden 16 nights now and counting and it’s becoming VERY frustrating to say the least.

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Over the last week, I realised I underestimated the adverse affects that can result from the immunotherapy treatment. When my doctor told me at the onset of the treatment I needed to stay in London over the 12 weeks, it was now clear why this was the case. My patience has been tested to the max, however I am now in the daily routine of being awoken early each morning to have my bloods taken and then have the morning treatment intravenously. I was fitted with a PICC line last Wednesday (a tube inside a vein just above the right elbow which feeds round to the main veins my chest) as they were struggling to administer the treatment through a cannula in my arm – my small veins could only take so much and my right arm looks like that of a drug addict (allegedly) covered in bruises. I am then free from around lunchtime and return to the hospital in the evening around 9pm for the next treatment and to sleep.IMG_2887

Residing in Chelsea has not turned me into a Sloane (there was some concern from my cousin north of the border that this may be the case), but I have been enjoying the delights that Chelsea and Kensington have to offer. Whilst the hospital food is ok, I have been out and about enjoying the local dining scene and have been eating pretty well at the local restaurants from oysters to sushi, tapas and fish its all been tasted over the last couple of weeks. As we live relatively close by to the hospital, I have also gone home for a couple of afternoons, which has been blissful. It’s amazing how the simple things like showering at home feel so good when you haven’t been able to do them for a while.

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Special friends and family have continued to keep me entertained coming to visit, take me out for the day and keep me well distracted and for that I feel very blessed. A visit from a good friend Susan from Ireland and all my lovely HK girls was lovely and just the tonic I needed after a very frustrating week. We had a gorgeous tapas lunch, spent the afternoon in Hyde Park on deck chairs and finished off the evening sampling mocktails in the Ivy Café.IMG_2890

I also sneaked off for a pamper afternoon with my favourite hairdresser Craig and this was a welcome relief to have complete distraction and relax for a couple of hours. I thought this may need to be cancelled but fortunately doctor visits were moved to the next day and I had control of my life back for the afternoon. As you know girls there is nothing like a trip to the hairdresser to make you look and feel good.

The lack of control over your life is one of the hardest things to deal with as a cancer patient and I have really felt my life is completely out of my control this past 2 weeks. You have to live day by day and also keep your expectations in check. I have found this challenging especially when it looked like my liver (alt) levels were starting to fall only for the next day’s results to show they had stalled or slightly increased. When I have felt disappointed, David, lovely friends or funny messages have helped to keep me going with a big smile.

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The medical team at the Marsden have also been amazing explaining everything to me, visiting me daily and I have also had fun and laughter with the nurses on the ward. They have all looked after me like a VIP for which I am hugely grateful.

I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. Unfortunately there currently remains no known cure.

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We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:

https://www.justgiving.com/fundraising/shomelanoma

More will come on a future blog about the shomelanoma fundraising but to kick things of his month’s fundraising challenge is David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

 

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Don’t Die for a Tan – My Melanoma Ride

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It may be a cliché, but it is true that nothing can prepare for you for being told you have cancer. At 45 years old; healthy, active and enjoying the prime of my life, it was a shock. When I look back walking into the doctor’s office last June to be told the dodgy mole that had been cut from my back was a thick (4.5mm) stage 2c melanoma cancer, I had no idea how severe the journey I was about to embark on would be. I was ignorant in thinking that once it was cut out, this would be the end of it. Melanoma is an unpredictable and aggressive disease.

What followed was a series of scans (brain (MRI), body (PET) and a wide local excision (WLE) to remove more tissue around the original mole site. All of the scans came back clear and I was referred to the Royal Marsden Hospital to see  oncologist “Dr James Larkin”. I wondered why I was being referred to an oncologist when everything was clear at that point, but this proved to be a great decision for my journey ahead. All my care was transferred to the amazing skin team at the Marsden, and no further treatment was required at that point. This led to a path of regular monitoring.

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The summer passed and I slipped back into normality, enjoying the simple things in life and spending quality time with family and friends. I put the cancer to the back of my head, went back to work and got on with training for the WellChild Kilimanjaro Challenge. I had scans just before setting off for Tanzania in late October and luckily they came back clear. We felt even more excited to get on the plane – to take part on our WellChild charity climb to the summit of Kilimanjaro. I have been fortunate to experience a lot of adventures having lived in France, Beijing and Hong Kong, but this trip goes down as perhaps the most unforgettable. I love traveling, hiking and exploring the world, and this one proved to be all of that and more.DCIM100GOPROGOPR0549.JPG

But soon after we returned from Tanzania, I started to experience a strange pain in my right breast. After numerous tests and scans, it was discovered that the melanoma had progressed to the lymph nodes under my left arm. I was booked in for an axillary lymph node clearance at the Royal Marsden Hospital on February 8th. Although the operation to remove the infected lymph nodes was a success, my surgeon warned that he found more melanoma than appeared on the original scan and that this could mean it was an aggressive form of cancer. It obviously was not the news I had expected or hoped for, and it naturally led to a tremendous amount of worry. I didn’t sleep that night. But the next day was different. Many friends and family turned up to the hospital to visit and that propelled me on a positive route to recovery.

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As anyone who knows me would attest, I am a glass half-full girl and do not wallow or whinge. Springtime is a beautiful time of the year in London, and so there I was back at the Royal Marsden. As someone who has led a healthy life and fortunately experienced little injuries, it was weird but indeed accepted that this was the new norm. I am now a frequent visitor to the world-famous cancer hospital in Chelsea. I was feeling good and my oncologist explained what the next steps in my treatment plan would be. Scans were planned for late March, and in the meantime we had booked a weekend to Barcelona. It was fun and relaxed, but soon after we were back I started to feel some abdominal pain and as you can imagine by now that played on my mind. If there’s one thing I have learned since my cancer diagnosis, it is to trust your instinct and flag it up to the medical team when something does not feel right.

The next few days were plagued by worry and anxiety. I decided to phone the team at the Marsden and ask them if they could move my scans forward. They agreed and my scans were brought forward to the next day with results due by the end of the week.

Friday, March 31st arrived as somewhat of a doomsday. By then I had convinced myself that there was something wrong, as I now find it easier to prepare for the worst going into these meetings. Still, I was not expecting to walk into the Doctor’s office and be told what I was. The MRI scan had detected a tumour, albeit small at 4mm, in my brain. At this point, I was speechless and the appointment went foggy from there. My head ached as I tried to process the awful news. I did not digest much about the planned immunotherapy treatment except that there was a laundry list of side effects.DAVEAWED

We spent the weekend at a friend’s gorgeous wedding, drinking too much red wine yet smiling and feeling distracted with the lovely company of good friends.  The weekend after that we escaped to Devon to chill out and clear our heads before starting the immunotherapy treatment. This really was ‘What the Doctor ordered’ before returning to London and commencing the first of many trips to the Marsden in Chelsea.SHODAVEDEVON

My hope in writing this blog and sharing my story is to raise awareness of this dreadful disease. It is one that is actually considered 85% preventable. It also is the fastest growing cancer amongst 15 to 34 year-olds in the UK.

This blog is also meant to keep my amazing friends and family up-to-date with my melanoma ride. In the past 10 months, I have come to realise how lucky I am to have a wonderful husband, true friends and an exceptionally caring family. All of you have supported me every step of the way so far and there are no words that can describe my appreciation for it. My mantra has always been to live and enjoy every day to the max, but ironically I have found that there is even more to that. I feel grateful for the simplest of things and I don’t take one thing for granted. I feel good, loved and I am not going to let this beast take the best of me.

I am going to pour my energy into raising awareness about this disease and I hope that it makes a difference to other potential patients. We are planning a number of fund-raising activities and all proceeds will go to Melanoma research for the Royal Marsden, where I am being treated.

Please stay tuned…