…well they sure as hell weren’t letting the Bonzo in much to his dismay. However, we both enjoyed our drive to Old Basing to wave and chat with Brenda through an upstairs window. Despite an uncomfortable night, Brenda looked good and one has to take stock and remember that today is still only day five post-op. It has also passed me by to a degree that she has had two large doses of chemo and this will need to percolate out of her. At the moment it manifests itself in taste. She has a dressing that has caused a blister and her swollen left leg is still being closely monitored. All these horrid things, she a trooper.
Following our visit, a physio session left her tired out and sensibly she went back to bed. We’ve spent an afternoon going back and forth in frustration as her cricket team failed to fire (I blame the SID for not somehow engineering that her husband and son are in the line up). Hopefully, her planned simultaneous online film viewing with Madelaine this evening will be an easier watch.
The clinic can be a bit of a wilderness at the weekend and Sunday will be a bit of a hump day. Meanwhile, we look forward to a successful Ocado delivery Brenda having wrested back the control of the ordering. Thank goodness she is still in control.
I hadn’t counted on it raining when I embarked on this morning’s visit. Nor that my presence in the car park would require an ABP being issued to deal with the strange man hanging around the refuse disposal area. Oh for a simple Hazmat Suit. Despite these tribulations, I got to see and talk to Brenda through the window on the phone for half an hour. I was able to drop off some mail and I left her delighting at the news that our Ocado order had all gone wrong without her overseeing things.
No sooner had I arrived home than I received a message with the attached. Brenda being escorted from ICU to her room on the Ward. This seems to have happened in double-quick time. Although as yet she is still totally plumbed into everything and we are still at the baby steps stage.
Duff information central here. STOP PRESS Brenda’s stoma has not been moved. Somehow muggins here, picked up this snippet of information. When I first spoke to Brenda yesterday I passed on this information. Fuelled by Fentanyl, this sent Brenda into a vortex of confusion which at one stage had one of the nurses believing her stoma had swapped sides. Anyway, let’s strike this from the record for good and celebrate a bit of Brenda that is still intact.
Today Brenda sounded remarkably like herself and as you can see she is looking as good as anyone with something stuck up their nose can. She has spent five hours sitting up in a La Z Boy type chair which is a new and welcome addition to the ICU. I have ‘Facetimed’ her a couple of times and have, despite a couple of false starts, made an appointment for her to have her haircut on the 29th April as ordered. It seems Brenda has started working through her new ‘to do’ list already.
Otherwise there is little to report. This first stage is pretty much riding the wave of the extraordinary trauma such a big operation causes. I shall pop down to give her a wave through the window tomorrow and let’s keep our fingers crossed that her stay remains as uneventful as possible. Thanks to everyone for their heartfelt good wishes and for all the kind offers of help and menu planning. India is immersed in her IB and Teddy is back from University so we are pretty self contained.
I’ve just spoken to Brenda’s mother in Canada to relay the following:
The surgery was as difficult as expected and they have removed as much of the tumour as they can. Brenda’s bowel has been untangled and her stoma moved to the other side of her tummy.
The cytoreductive surgery was followed by hyperthermic intraperitoneal chemotherapy, hot chemo in layman’s terms, a cocktail of two drugs.
Specimens have been taken for analysis with a view to future Immunotherapy.
She has not lost much blood and will be kept asleep until the morning. It has been a long trying day doing nothing so I cannot imagine the wear and tear on Brendan Moran and his team. My thank you to him seemed rather feeble but, what else do you say?
An indomintable, high stepping Brenda made her way to theatre this morning.
This song was introduced to me by Teddy during his 1 hour slot on Bristol University radio this week, and I’ve been listening to it ever since. According to the dictionary on the Internet it’s an ‘informal North American expression’ meaning ‘force of character, determination, or nerve’. That’s what I need at the moment, so ‘The Moxie’ it is.
I have been so busy over the past few weeks with work and my boards and various other things that I’ve been able to push tomorrow’s surgery to the back of my mind. I’ve been upbeat and positive and full of bravado about my upcoming ‘tummy tuck’. Last night, however, it all fell away as I was getting ready for bed. The reality suddenly hit me and I felt scared, worried, and very tearful. It took me by surprise, but it felt good to let it out. Happily, waking up to the sunshine this morning, walking the dog with Trendy, and enjoying some of our freshly-baked, mother-daughter homemade sourdough made everything feel a bit better. More tears were shed throughout the day, but I’m definitely feeling more hopeful than I was last night.
This afternoon, when Hillary and I checked into our VIP suite at the Hampshire Clinic, we were greeted by two old friends from my previous ops, and later I had a quick chat with my anaesthetist followed by a visit from Mr. Moran which kept me busy. More of my former nurses have popped in to say hello and wish me well this evening, and I’ve been overwhelmed with all of the lovely messages, emails, calls and FaceTimes with friends and family. I even received a link to a ‘Kudoboard’ with some brilliant silly videos, old photos and lovely messages from friends as well. I couldn’t feel better supported or more loved going into this op, and I’ve got the A-Team doing the surgery, so I’m in as good a place as I can be.
Thank you to everyone who is following the blog and sending messages of support to me, Trend, Teddy, India and to my Mum as well. And thank you to everyone who is remembering me in their prayers. It means a lot to all of us. I’m now handing over to Trend to keep the blog updated for the next few weeks while I work on my Moxie regeneration.
Whilst it’s daunting to think about going through this horrific MOAS (Mother Of All Surgeries) op yet again, Trend and I are both pleased that we have a plan and we’re grateful that they are able to fit me in sooner rather than later. It’s a bit more difficult each time due to the scarring from the previous surgeries and all of the organs sticking together, but I know that I’m in good hands and Mr. Moran and his team will to the best they can to keep me going.
Very apt lines from the song by The Mighty Mighty Bosstones. Those of you who have followed my previous ops will know that I am very fortunate to be under the care of Mr. Moran at the Hampshire Clinic in Basingstoke. He operated on me (together with a team of surgeons) in January 2017 and again in November 2019 – both very long and difficult surgeries. And this morning, after meeting with him to go through my latest scans and symptoms, he is ready to open me up again for another big cytoreductive surgery followed by Hyperthermic Intraperitoneal Chemotherapy (HIPEC).
Some of you will know that I have seen signs of the disease progressing over the past 6 months, the latest manifestations have been kidney problems and a swollen and sore left leg. I was gutted to finally take delivery of my new Peloton bike the week before last, only to find that my left leg tired after ten minutes of spinning. Last week we ended up in A&E one evening and the next morning as there was concern about a blood clot. We now know that the swollen leg is likely caused by pressure on my lymph node and the kidney problem is caused by pressure on my ureters. I have two very large cystic tumours that are growing – one protruding from my tummy and one internal, as well as a lot of mucin (gel) in my abdomen, which will cause more problems if we do nothing.
On the plus side, I know what to expect and hopefully, with that experience, how to get through it. The minus side is that due to Covid, this time I will be in hospital for weeks without any visitors at all. That will not be easy as I relied on my daily visits from Trend and from seeing a number of friends pop in to brighten my days. I will have to rely on my life-size cut out of Hillary again, on the friendly familiar faces of the nurses and staff, and on FaceTime calls.
I’m scheduled to go in on Sunday the 14th for surgery on Monday the 15th March, so hopefully by the time I’m home we will be into a sunny spring and I can recover and receive visitors in the garden.
We will keep the blog updated throughout and I will rely on Trend to come up with some more brilliant song titles like ‘Mr. Moran’.
Who’s Zoomin’ Who? Am I up or am I down? It’s been hard to tell lately, but as usual, I would lean towards ‘up’. Perhaps it’s because I’ve just completed my second 3 miles of my Royal Marsden Cancer Charity 40 miles in January challenge. Exercise always makes me feel good as does loud 80’s music (which is playing in the background as I type).
A year ago today I was not even a month out of hospital after my second MOAS (Mother Of All Surgeries), I was a piffling 52 kg and was desperately trying to put on weight while adjusting to life with an ileostomy. Happily, I managed to adjust quite quickly and was back at work and and out and about in February. I had a fabulous string of International Women’s Day events touting the 30% Club #theMissingMillions report just before lockdown in mid-March.
Today I am weighing in at a slightly too healthy 60.5 kg and am determined to take some off (and have ordered a Peloton to help with that). Having thought that I would never get used to my ileostomy, it is my ‘new normal’. And, like everyone else, I have adjusted to work on GoogleMeets, Zoom, Teams, etc. It’s been a very busy year for the Inclusion and Diversity business and I’ve worked with many new clients and some teammates that I have never actually met in person. My work has been a real tonic – I love what I do, I really like my clients and my team and I feel a huge sense of purpose in what I do, which has really helped me to push my cancer concerns to the back of my mind.
Health-wise, it’s hard to work out what’s actually happening. That’s the nature of this very rare disease – there is no clear path or prognosis and progression is not linear. My latest scan showed progression and I am now more aware of my symptoms than ever before. I have at least two very large cysts in my abdomen, one of which is draining on a daily basis keeping me very close to the loo at all times; the other is slightly larger than a cricket ball and is directly under my stoma (I originally thought it was a hernia). It’s not painful but it does stick out a lot and means that tight waistbands can be a bit uncomfortable (thank goodness for dressing from the waist up for Zoom calls). What will happen to these ‘cysts’ – will they continue to grow? Will they have to come out at some point? I don’t know. At this stage my surgeon is not keen to operate unless I have organ failure and given the COVID situation, I don’t know that I could get in even if he did decide to do something. My oncologist is trying to manage the fluid production in my abdomen with a drug that is used on other cancers. It’s not a cure but he hopes that it will improve my quality of life. I had the first injection just before Christmas and have two more scheduled in the coming weeks. So far it hasn’t helped, but I hope that the second injection in a couple weeks may make a difference. I don’t know if I have had any side effects or not – I’ve been napping a lot more over the past week and have really felt the cold, but that may just be a combination of taking a holiday after working full-out and cold damp weather. I’m sure everyone has been feeling a bit like that recently.
Now, as we move into January, I am determined to make a number of resolutions for 2021 – to keep living life to the fullest (whatever that means in Covid), to keep up with family and friends, even if it’s just on Zoom or the phone for now, to stay as fit and healthy as possible, to read more for pleasure (and create boundaries between work and home), to find ways to dance with girlfriends over Zoom (thanks for the playlist, Lucinda!), and to seriously consider ‘wild swimming’!
This past week has been a tough one. I had a CT scan and blood tests on Monday and then had to wait until Friday to have my follow-up consultation with my oncologist. I have also been waiting for the results of a genomic sequencing that was being done on my original tumour to see if we could find any mutation to target. Knowing that I am experiencing symptoms of the disease now and that it is clearly progressing, I have been more anxious this week than normal. I thought I was keeping it all together until I broke down into tears in the office this week over a silly misunderstanding with a colleague. I was mortified and had to explain that it was due to all that was on my mind and not the work situation – not one of my Wonder Woman days!
Time rolled on and I had my follow-up appointment with my oncologist yesterday and Trend and I left with a small glimmer of hope. My oncologist’s take on my latest scan was there is clear progression of the disease in various places, particularly around my kidneys but that the rest of the diseased areas are largely stable. My tumour markers from my blood tests were also stable. The genomic sequence that they did on my tumour was largely inconclusive so there are no gene mutations that they can target with chemo or immunotherapy at the moment. However, the one gene mutation that they could identify is the KRAS gene and it’s one that’s receiving a lot of attention at the moment as I believe it is common to many cancers. My oncologist thinks that there could be treatments coming out in the next 6 to 18 months that could be relevant for me.
We also discussed the fluid that is being produced in my abdomen (which is how my disease manifests itself) – without going into too much detail, it’s currently coming out of me at the rate of 100ml per day. I have to think that it’s a good thing that it’s coming out rather than building up as it did last year prior to my last op when my tummy reached full space-hopper proportions. However, it does present some real discomfort issues for me in terms of feeling like I need to go to the loo all the time (and having to always be close to one) as well as having to get up several times through the night. He knows of an injection used in other cancers to inhibit secretions and he has seen one case study of it being used in a patient with PMP with some success. He is going to try to get approval to try it on me with monthly injections.
We didn’t discuss my new hernia under my stoma – I need to deal with that separately although I know that my surgeon is not keen to open me up again. Luckily, it’s not causing any major problems right now. I can exercise and jog with a hernia band on to give me support.
So, although the disease is clearly progressing, I didn’t get the sense that I am in any immediate danger, and there is a small grain of hope in the development of the KRAS mutation treatments in the coming years. We agreed that his job is to work with my surgeon to keep me alive long enough for the treatment to be available for me.
The lyrics from Green Day “Summer has come and passed, the innocent can never last…” felt appropriate for this blog. It’s a hard one to write as I’m not really sure what to write or why I’m writing it, other than perhaps helping to get the narrative straight in my head.
I’ve had a lovely summer in spite of Covid. It’s been great to have both children around so much and to have nice weather to enjoy some croquet and bbq’s together. I was lucky to be able to have a short visit with my mum and to catch up with some of my friends and family in Nova Scotia, and my job is going well, my boards are busy and there has been lots of cricket on the telly. And, I’ve been feeling well and managed to get out on my bike and do some lovely off-road running as well.
Prior to my surgery in November last year, I was having CT scans and blood tests every three months to monitor the progression of my disease, so we were very much on top of it. Post-op, however, we decided to wait six months and then with Covid, we delayed further until mid-September – particularly as I was feeling fit and well. As a result, it felt like a real slap in the face when my recent scan showed that the disease is progressing. It really pulled me out of my world of ‘happy denial’ and I had a hard time reconciling the news with how well I have been feeling. As for treatment, I’m not a good candidate for more surgery and chemotherapy isn’t known to have much effect on my cancer. I’m not, however, one to just sit back and do nothing, so I am speaking to other doctors and looking into alternative therapies.
Coming back to why I’m writing about this – it’s not because I’m stepping back from things and sitting at home resting. Of course I’m not. I still feel really well despite what the scans show. I love my work and my boards and 30% Club activities and all of these things together with my family and friends are what give me my strong sense of purpose and fuel my resilience. However, as strong and as Wonder Wonder-like as I like to think I am, I do find it all a bit overwhelming at times and I do have the occasional blip. When that happens I need to let a few tears fall, listen to some upbeat 80’s music and have a dance. I would have said that I may ask for a random hug as well but sadly Covid won’t allow it. It also means that I may not be as on top of all of my emails as I would like – please don’t worry or take it personally if I don’t respond right away. I’m trying to get better at finding a bit of downtime to read or do some exercise or to just be. I love my life and I intend to continue to enjoy every moment of it, to live life to the fullest, and to take the time to savour it.