When we left you last week, we were about to head to the Royal Marsden (Thursday 13th) to discuss trials and I was undecided about whether we were going to go to Rome or not, a lot has happened since then.
So we went to the Royal Marsden, hoping to get Jo into a trial, but when we met with the Oncologist he went through the possibilities, but all were either unlikely or not yet available. The one that was possibly available was the plasmamatch trial, which he said Jo was unlikely to be eligible for, but it would be worth having the test to see if she was.
The plasmamatch trial looks for DNA mutations of the cancer in the blood and then matches that to a particular targeted therapy, however they are only looking for specific mutations, the oncologist thought that looking at her profile she was probably unlikely to have the mutations they were looking for but it was worth checking.
He also advised that with Christmas etc, it would probably be a month before she would get a positive answer and start treatment and having examined her skin metastasis (which has spread significantly) he felt it would be best to do the Blood test but then start the standard planned Eribulin Chemotherapy treatment first and have the plasmamatch as something to fall back on if the test was positive and Eribulin stopped working.
He also went through a couple of other possible trials or treatments that may be available sometime in the first quarter of 2019 but again for those they are only possibles, so we will have to wait and see.
The oncologist also didn’t seem to be bothered by our plan to go to Rome, which was reassuring and he planned to get the blood test done on the next Friday as soon as we had returned from Rome.
So we left the Marsden slightly disappointed but still with a plan and still with options, so not a complete disaster.
Friday 14th we headed to Lewes a town only a few miles from our home for our night away for December, it’s a town we like going away in as we know it well and a couple of our friends joined us. We were able to put the Marsden behind us and had a fun night out.
Sunday we headed to Gatwick where we had booked a hotel as our flight to Rome was quite early on the Monday morning and we relaxed in the hotel and had something to eat.
Off to Rome we went, well actually it didn’t start off to well, we were taxiing out to the runway when the lights started flashing in the plane and the plane stopped and the Captain announced there was a computer fault and the plane would have to return to the gate. Luckily they found us another plane and two hours late we took off and headed to Rome.
Despite the two hour delay we still managed to get stuff done on the first day, we went to the rather strange Capuchin monk crypt, its rather eerie but quite interesting and then the amazing Trevi fountain, where we both made a wish.
Day 2 saw us have a guided tour of the Colosseum and Roman Forum, which was absolutely fantastic. I would highly recommend the guided tour as it was really interesting and gave so much depth to what you could see. Later we went to the Pantheon, again an amazing feat of engineering, everything in Rome is so huge. Finally we stumbled upon an amazing light and music show at the temple of Hadrian.
Day 3 saw us head to the Vatican City for a guided tour of the Vatican Museum, Sistine Chapel and St. Peter’s Basilica, again the tour is highly recommended as it adds so much detail to what you are looking at, especially if you are in to art and sculpture. The Sistine Chapel is a magnificent work of art and the Gallery of maps is also fabulous. St. Peter’s is breathtaking and I used the opportunity to say a prayer or two while I was there.
Day 4 we were due to head back in the evening and in the morning we planned to do the Spanish steps which was our last thing we wanted to do, but we had a message from a friend that Gatwick airport had been closed due to drone activity.
During the trip we had received a message from the Marsden that the Blood test couldn’t be done until the New Year and that we should just start with the Eribulin and the chemo unit at the Montefiore had agreed to open especially for Jo on Friday to do her first Eribulin.
We were both desperate to start the Eribulin as the skins mets were getting worse by the day and Jo was in quite a lot of discomfort throughout the Rome trip but I have to say she tried to hide it from me well, but I could see in her face that she was struggling.
We had to be on that flight as Chemo was starting in the morning at 8:45.
We monitored the situation for an hour and started looking for flights to other airports, just in case the situation didn’t improve. I then made the call that we should book a back up flight anyway, for the sake of a couple of hundred pounds. So I booked a flight to London City airport, just as well I did as Gatwick remained closed and our flight was eventually cancelled.
One of our best friends picked us up from London City and took us to Gatwick to pick up our car and we made it home, slightly earlier than originally planned, however we didn’t get to see the Spanish steps but never mind, we were home.
Thankfully we were at the hospital for 8:45 for Chemo on Friday morning and the chemo went well with only two attempts to get the Cannula in (Jo is being referred to get a Portacath put back in).
The Chemo nurse also spoke to the oncologist about the expanding skins mets and pain management and got Jo some steroids and some medicated plasters to help cope with he symptoms, however the medicated plasters can only be used on unbroken skin and most of the lumps have some break down in them, so just going to stick with the steroids for now.
The nurse also has referred us to our local hospice for community and symptom support, which brought a few tears from Jo unsurprisingly as her only experience of a hospice was her Dad sadly dying in one. The nurse did really stress that hospice’s provide support to ‘live life’ and we know it is necessary to start getting them involved, so that we have the support we need.
So Christmas is around the corner, we as usual will have a full house (12) and Jo as usual will be doing the cooking, she is a bit of a control freak and doesn’t like to let other people take over, I will try and help her as much as possible and probably just as well she is on steroids until Boxing Day.
Thank you all for following my blog and we both wish you all a fabulous Christmas and a great New Year.
2018 has been a tough year but we intend to end it on a high, enjoying life and living it to the max!!
Kieran and Jo x