Update of our rollercoaster journey

Hi all

Sorry not updated for a while as so much has been going on.

On the good news front, Andy took me on a picnic at the end of July and surprised me with a proposal! He had planned it all, with help of friends had set up a teepee, candles, etc, and he looked so excited and happy, it was amazing. We booked and planned our whole wedding in 10 weeks and with covid and Andy’s illness, there were so many times we thought the wedding would never happen. Thankfully, it did and we had an absolutely amazing day with our closest family and friends. The weather was kind to us and we got married outside in a beautiful venue. It was truly magical and Andy was well enough to enjoy it and coped really well.

He had a CT scan at the end of August after six cycles of Folfiri and we did not get results until 22 September due to his oncologist being on maternity leave, the locum then walking out without any notice, it was a complete shambles. After MDT we were told they felt it was stable in all areas, not shrunk but not grown either. We felt this was a positive sign chemo was at least keeping it under control for now.

On the bad news front, a few days after the scan results and two weeks before the wedding, Andy came home from work shivering and with abdominal pain. A couple of hours later he was virtually unresponsive and ended up being blue lighted to hospital with sepsis. Very frightening experience. It was felt this stemmed from his kidney as tumour was pressing on kidney 😪 Thankfully they got the sepsis under control quickly and he ended up having kidney stents six days before the wedding.

Four days before the wedding we had an oncology appt when we were told that despite having told us two weeks earlier than his CT scan was stable, they had reviewed it again in light of his kidney stents and now felt it actually showed progression and that the Folfiri wasn’t working. 😭We were totally devastated and distraught, having previously been told it was stable. It was the hardest thing we ever did but we decided not to tell anyone before the wedding as we wanted it to be a happy day of celebration. He was offered Lonsurf but we were not keen for that so opted instead Folfox, which he had for six months in 2019 after his initial bowel surgery, plus privately funded Avastin, which we finally managed to ascertain would cost £455 per cycle. We also sought a private second opinion as to other treatment options.

Three days after the wedding he then had bad abdominal pain during his 9th Folfiri so it had to be stopped midway and he was admitted for a couple of days.

We have been chasing for new chemo to start ASAP and first one is finally scheduled for next week. Sadly in the last couple of weeks, Andy’s health has deteriorated greatly. He began struggling with eating, feeling very bloated and then began being sick. As a result, he has become so very painfully thin and weak. We have had to sit down with our children and have the conversation no parent ever wants to have. So heartbreaking 😭😭😭

He had pre chemo yesterday and they could see how poorly he is. They took his bloods and we were called in evening to say he had very low sodium and high creative and needed admission.

He is now back in hospital but is still being sick and looks so unwell. It is looking very unlikely he will be considered fit enough to have his chemo next week. It is absolutely heartbreaking to see how much he has deteriorated since our amazing wedding just over three weeks ago and I fear he is now too unwell for further treatment 😪. We are praying for a miracle. It is just so, so sad to watch him deteriorate so rapidly.