Cancer · Fundraising · Living with Cancer · Melanoma

Milestones, an anxious wait and a new challenge

It is feeling like we have turned a corner after what can only be described as an annus horribilis.  One year on we have been remembering all those who have tragically lost their lives not just from COVID but cancer, heart disease, strokes and other illness.  We are also feeling thankful to all of key workers especially in the NHS who have kept going through unimaginable stress.  As spring arrives we can start to feel hope with a vaccine programme that is currently going well and I cant wait to see family and friends again.  As I write this I am feeling very thankful to still be here 4 years on from that horrible day on Mar 31, 2017 that I was told melanoma had been found in my brain.  A BIG thank you to the fantastic team at the Marsden still doing a kick ass job of keeping me alive and kicking.

As you know from my last blog, 2021 started for me back on the cancer rollercoaster.  Many fellow patients will identify with this rollercoaster as it goes on from scan to scan (currently every 3 months) but doesn’t take much to disrupt the apple cart.  After the worry of the numbness in the ear in January I turned up for my latest scans feeling a bit more relaxed.  As I now have breast cancer checks along with the melanoma scans the team at RMH had booked all of my tests in for the same day so that I didn’t have to return to the hospital over several days.  It was all going well, I had my CT and MRI scan and turned up for my ultrasound on my breast when I noticed that my arm was bleeding badly.  The nurse patched me up and the ultrasound went fine and I set off to get some lunch, as I was starving not having eaten all morning.  

I usually enjoy a trip around Chelsea but with everything closed and it being a bitter cold day being sat on a bench outside Marsden HQ didn’t hold the usual joy.  As I munched my sandwich I noticed that blood was still running down my arm so headed back into the hospital where I was due for blood tests.  It seemed my vein had burst after the cannula was removed from my scans so the nurses were fantastic as by this point I was feeling faint probably a combination of the lack of food and the stress of seeing my blood covered arm that made me look like an extra from a horror movie.  It was decided to leave the blood tests to the next day they gave me cup of tea and a biscuit made sure I was ok and I headed off for my consultation with my breast doctor.  This was all going well; the tamoxifen continues to work when she noticed the results of my CT scan that had taken place in the morning had come through.  The scan showed I had a chest lymph node that was “indeterminate”, this could be caused by the cancer or inflammation but could also be a result of the COVID vaccine which I had recently and has resulted in several patients having lymph node anomalies pop up on scans.

Anyway I left the hospital with my head in a bit of a tailspin especially after the day I had just had.  I jumped in a taxi to head home and as I opened the door my nurse Nikki had called David as they had been told I had received my CT results and left the hospital worried. I spoke to her as soon as I got home and she reassured me not to be too concerned and I had my consultation with Prof Larkin the next day and we would discuss it further then.  I felt better and by the time I returned to the hospital the next day I was feeling less worried and in a better frame of mind than the day before which had been long and stressful.  After the meeting with my doctor at which my MRI brain scan results had also come through and these were fine it was decided they would bring my next scans forward a month to double check the chest lymph node.  He was positive the brain scan was good after all the concern in January, the tamoxifen was working for the breast cancer and fingers crossed the chest lymph node is nothing untoward. I left the hospital feeling much happier and have managed to put it to the back of my mind.   

One of the positives of my cancer diagnosis is that it has made me really focus on what’s important in life. The last year has been hard for everyone but it has taught us not to sweat the irrelevant and make the most of every day plus appreciate the small things.  I have also enjoyed channeling my energies into fundraising to support ongoing melanoma research projects at the Royal Marsden. It’s my way of saying thank you and giving back whilst the challenges keep me fit and active along with those that I love. The challenges have been curtailed for the last year due to COVID but are about to kick back into gear with a new challenge the Shomelanoma Skipathon , which will be taking place during the Melanoma awareness month of May.  Team Shomelanoma will be skipping  for 10 mins every day in May, having fun, counting their skips, getting fit, sharing photos and videos and raising valuable funds for melanoma research at the Royal Marsden. We would love you and your kids to join us. Full details are available here  https://shomelanoma.com/fundraising-skipathon

I also have to say a huge thank you to Phil and Sharone Slavin who made a very kind donation to melanoma research in memory of Phil’s father who sadly passed away last year.  In addition, Russell and Anna Bliss have also made a kind donation to the upcoming Giants Causeway Hike, which is due to take place in mid July.  The support we have received over the last 4 years for the fundraising has been amazing and I want to thank everyone who has participated in all the fundraising activities and generously supported them. This means the world to me, the melanoma team at the Marsden and the charity so a HUGE thank you. It also keeps me motivated to continue and also helps keep me fit and mentally well.

If you would like to join any of the upcoming fundraising challenges or organise your own please let me know. I will be doing a full update on the melanoma research projects the funding is supporting  in an upcoming blog.

As the lockdown starts to lift, I am excited to get back out to see friends and family and very much looking forward to a trip north of the border to see the Scottish family plus a trip to one of our favourite places the Outer Hebrides. We have been spending the last few weeks with regular trips to Richmond Park, which is a pretty beautiful spot and with the arrival of spring is looking lovelier each week.  It will be good to go further afield and catch up with the hiking gang soon as we have been missing them all and all of their banter.

As the weather starts to heat up with the UK forecast to have a mini heat wave this week we will no doubt see the excitement of the British public stripping off as soon as they see the sunshine. Remember that UV damage is cumulative and to protect you skin and stay out of the mid day sun. Most importantly don’t get burnt and if you do notice any changes to any moles or new skin lesions get them checked out by a GP or dermatologist. The motto is if in doubt get it checked out and don’t delay.

Thank you as always for all of your support. I’ll be back soon to report on an update on the Skipathon and to offer some training tips. In the meantime happy skipping and I’ll be back with more Shomelanoma updates soon.

I

Cancer · Fundraising · Living with Cancer · Melanoma

Back on the Cancer Rollercoaster and Vaccine Time

I hope that you are all surviving lockdown 3, it is starting to feel like groundhog day in the UK and when I woke up one morning last week I said to David, can you just wake me up when we get to spring.  In the last month there have also been more trips to Marsden HQ. I had settled into my routine and was happily going along with my 3 monthly scans and telephone consultations.  After the good news of my melanoma scans in early December, just before Xmas, I found out that the biopsy done on the right breast was cancerous and whilst it is contained and very small it does now require treatment.  I felt disappointed as if dealing with stage 4 melanoma wasn’t enough now there was another cancer to be dealt with too. However on a positive note it was 4 years since the precancer breast cells were originally discovered and the tumour was very small.  Just before Xmas I returned to the Marsden to discuss the planned treatment for the breast cancer.

I can’t tell you how good it is that both of my doctors are at the same hospital. I had a nightmare experience 4 years ago when this was not the case. I wouldn’t even like to think about how this would have been in the current COVID crisis.  Before my appointment both of my doctors had discussed my situation and there are two options for my treatment path and I was back to discussing the competing cancers risk assessment.  The first is that I take the drug tamoxifen with a possible course of radiotherapy if required. The second option would be a mastectomy with full reconstruction. I have currently started the tamoxifen and so far feel ok with no side effects. This week I had an ultrasound at the Marsden, which showed that I am responding to the treatment and the tumour has almost halved in size and is now almost undetectable which is good news. At this point I wont be needing any further treatment but will continue with the tamoxifen and be regularly monitored.

Not long after my last melanoma scans in early December, I started to experience a strange numb sensation in my earlobe.  Over the Xmas holidays I tried to put this to the back of my mind but I started to have this nagging doubt that something might be wrong. Three years ago when the last tumour was found in the brain I experienced a numb feeling in my mouth and the numb feeling of the ear was on the same side. I had a telephone appt with my Oncologist in mid January and told him about my concerns. He said given my previous experience, this had to be taken seriously and they were going to organize an urgent MRI scan of the brain. My head went into a tailspin as I became convinced that my targeted treatment had stopped working. I have been on my current melanoma treatment for 3 years and I have been fortunate that it has worked for so long for me as on average it works for patients for 12 months before the melanoma develops resistance to the drugs.

My MRI scan was organised for the following Monday and I had my follow up appointment scheduled for the Friday. My doctor asked me if I wanted to come into the hospital for the appointment rather than getting the results on the phone and I decided this would be better. It was a long few days  and although I tried to keep myself occupied I was feeling extremely nervous.  My mind was racing and I already had the next treatment plan set out in my head.  In addition, due to COVID you are not allowed to have partners in the hospital with you so I had to attend the appointment on my own. Friday morning arrived and I put on my big girl pants and headed off to the hospital.  David did come with me but he had to wait outside. Luckily I didn’t have to wait long for my appointment and I was very surprised and relieved to hear that the brain scan looked good and there was no change since the last scan in early December.  My doctor asked if I had noticed that the numbness in the ear lobe had been getting worse and I said no it hadn’t gotten any worse. As I mentioned I do have nerve damage from the previous tumour so its possible that could be the cause or it is unexplained. He said we would monitor it and leave the next scans in as planned. I left the hospital to find David sitting on a bench outside awaiting the news and whilst there were no trips to the Ivy Café Chelsea due to lockdown there was time for a coffee and a big slice of cake en route home.  

 Whilst I am feeling hugely grateful that my melanoma is still under control, the last couple of weeks have really highlighted to me how quickly things can change. You can be lured into a false sense of security feeling well and then strange symptoms appear and you immediately assume there is progression of the disease. It is hard to deal with mentally as you obviously start worrying and thinking the worst. I was also reminded how awful this disease continues to be as a friend I had met through an online support group passed away recently and I couldn’t stop thinking about him and his family.   

Like a lot of people I have found the latest lockdown harder than the previous ones. Of course it is mid winter and I am missing seeing friends and family. I was so excited to be going to Scotland for Xmas so that was really disappointing not to get there as planned. The COVID crisis has now been going on for so long there is a feeling that you are wasting time.  On a positive note I did have my vaccine this week, which was good. Due to my treatment I am classified in the highly vulnerable group (even although I don’t feel highly vulnerable) and I headed down to the local church last Tuesday. I was very impressed by how efficient the whole set up was, the nurse did ask me if I worked for the NHS to which I responded no I am in the clinically vulnerable group. I felt fine after the vaccine except for a sore arm for a couple of days and I should get my 2nd jab within 12 weeks.

I have also signed up to the Royal Marsden/Crick Capture Trial, which is investigating how the coronavirus affects cancer patients and the effects of anticancer treatments such as chemotherapy, immunotherapy and radiotherapy on the course of COVID 19 infection. The aim is to develop better treatments to manage these patients. It involves having additional blood tests when I attend the hospital and completing questionnaires about symptoms and risk factors for COVID 19.  

I have been keeping myself sane going out for early morning walks on Richmond Park, Wimbledon Common and Hyde Park which has been uplifting and it really makes you appreciate the small things in life. Last Monday a beautiful day in London I met my good friend Liz and we walked around Hyde Park, it was stunning and I have to say London looked at its glorious best. I simply cant wait to get back out hiking in the hills and am so hoping that the restrictions are lifted by May so that we can escape to Scotland and revisit the Outer Hebrides.

I am also back onto planning the 2021 Shomelanoma challenges to continue supporting melanoma research at the Royal Marsden. If anything the last month has simply highlighted how much there is still to be done to find effective treatments to help all patients with this awful disease. It may be the middle of winter but please continue to do your monthly skin checks. This video from Melanoma UK is really helpful. https://www.melanomauk.org.uk/news/21-of-melanomas-undiagnosed-during-covid-19

Thanks as always for all of your support and I’ll be back with more Shomelanoma updates next month.

Cancer · Fundraising · Living with Cancer · Melanoma

Its December 2020 – The Forgotten 2nd Cancer

We have arrived in the final month of 2020 and for many of us I am sure we will be glad to see the back of 2020. What a contrast to Nov/Dec 18/19 when I was fortunate to go on the adventures of a lifetime to Argentina and Peru. I have had the photos pop up for the last month to give me a reminder of those amazing trips. Back in reality the latest national lockdown has ended and we are feeling hopeful about a trip to Scotland to see family over Christmas. But first it is December and back to Marsden HQ.

As some of you may recall 4 years ago I discovered that along with melanoma I also had DCIS (precancerous breast cancer) found in my right breast. As if dealing with one cancer wasn’t bad enough there was also a second to contend with. At the time, I had a horror month of a lot of tests and appointments at different hospitals across London with different doctors and several opinions and the situation only improved after all my medical care was all moved to the Royal Marsden. Shortly after this, the melanoma advanced to stage 4 and the precancerous breast cancer was put on the back burner as the melanoma was treated as high priority.  As my Oncologist explained to me its all about managing risks. Last month I received a reminder to go for a mammogram so it was time to revisit and check up on the forgotten 2nd cancer.  

I had a mammogram 10 days ago and a follow up appointment to review the results. My doctor said the mammogram looked very similar to 4 years ago which I took as positive but there was one area of thickening that they wanted to double check so they were sending me for an MRI, ultrasound and biopsy. I have to admit that I left the hospital with my head in a bit of a tailspin.  As I have been so focused on melanoma for the last 3 years and have felt very fortunate that it has been brought under control and for the last 2 years I have been able to live a fairly normal life with minimal side effects from the drugs I am on.  I was feeling that a Pandora’s box had just been opened and the December factor was about to rear its ugly head.

It just happened that last week, my regular melanoma scans were also scheduled so it was a week of almost daily trips to the Marsden. I had an MRI scan of the chest; this was an uncomfortable experience as you are face down breasts in cones and arms over your head as you go into the scanner.  After lying still in that position for half an hour, I came to the conclusion that this made the brain scan seem relaxing and I never thought I would be saying that. On Wednesday, I had my body CT and MRI of the brain plus blood tests which proved to be a challenge as one of the veins in my arm burst.  Feeling stressed, I left the Marsden and headed off for lunch with my good friend Liz and chatting with her helped to calm me down. It is amazing what a bit of lunch and a cup of tea can do for you so big thank you Liz as by the time I returned to get the blood tests done again in the afternoon it was quick and successful and I was able to head home for the day.

On Friday morning it was back to the hospital for an ultrasound and biopsy of the right breast.  I spoke to the doctor and she told me that the MRI scan of the right breast had shown up 2 very tiny lumps which they were going to biopsy.  On the ultrasound they could only see one of the lumps so they did the biopsy and now I have to wait for the results later this month on to see what happens next. On Friday afternoon I was having my regular clinic appointment with my Oncologist to get my latest melanoma scan results and this was making me feel very nervous. I had a quick walk up and down the Kings Road to calm myself down before returning to the hospital. You are not allowed to have partners with you at the hospital just now due to COVID restrictions so there was no rockstar husband by my side. I just had to put the big girls pants on and get on with it and this is sometimes easier said than done. I took big inspiration from the amazing Bowelbabe who has recently been documenting her latest surgery on social media and thought if she can be getting through this on her own without any fuss then I can get on with getting my scan results.

It was good to see my Oncologist and nurse in person (well masked up)  as consultations have all been over the phone due to COVID. But since I was already in the hospital then it made sense for me to get my scan results in person rather than rushing home to wait for a phone call.  I was delighted to hear that the melanoma CT and MRI scans were good and 3 years on from started my targeted drugs Debrafenib and Trametinib my melanoma is under control and I was told as far as the melanoma is concerned we are in the best place possible. I felt a huge relief that at least it was good news. The other positive is that as both of my Doctors are at the Marsden then they will talk to each other if I do need further treatment following the results of the breast biopsy. I left the hospital feeling in a better mood although I do have to admit my delight was slightly tainted by the fact I have to wait for the results of the biopsy and what happens next.

At this point I have to say a big thank you to the teams at the Royal Marsden. I know that in the time of COVID it has been hugely challenging for staff and patients.  I know I am very fortunate to be treated by such wonderful teams and there is a village of them from the security guards on the door to the receptionists, cleaners, radiologists, pharmacists, nurses and doctors everything has been handled efficiently and quickly so whatever is next I know I am in the best hands and that is hugely reassuring.  

Since the last blog when we were just a week away from the Giants Causeway Challenge like all other events it was postponed to next year. It was disappointing as we had been training hard and were looking forward to it. But next year we will be back onto the challenge cause and raising more funds for the team at the Royal Marsden. If you are interested to join us we have a number of challenges planned for 2021 including a team at the Royal Parks Half Marathon, the Giants Causeway Big Hike in July and the Blenheim Triathlon in September.  If you would like to join us or plan your own challenge please let me know and thank you as always for all of your support.

Last month, the Duke of Cambridge laid the foundation stone to mark the building works of the new Royal Marsden Oak Cancer Centre, which will be a state of the art cancer research facility, based at the hospital in Sutton. The new facility will bring together over 400 researchers under the same roof as patients and clinicians in spaces designed to encourage collaboration and to put patients at the heart of research. The building is due to open in 2022 and you can find out more here. https://www.royalmarsden.org/blog/hrh-duke-cambridge-lays-foundation-stone-state-art-cancer-research-facility

In addition, I made my first billboard appearance on one of the hoardings going around the building.  I haven’t seen it yet but ones of the girls at the charity kindly sent me a picture. As the saying goes it’s never too late to make it onto a billboard.

In the meantime, I have been out and about staying active and doing some hikes during lockdown to keep myself sane and stay fit and well preparing for the next adventure. Enjoy the run up to Xmas and I’ll be back soon with more Shomelanoma updates.