Hi all, 

I decided to not visit this forum very often because being constantly surrounded with cancer conversation becomes detrimental to mental health. It isn't easy to avoid when you are living with it first hand, so it's important we take every moment away from the topic to let our minds rest. 

Nevertheless, I feel a sense of duty to reply with an update given the rarity of my fiancés cancer. 

First and foremost - 6 months later, she's still quite healthy. Cancer is still very much with us, but symptoms are minimal. 

Following initial intention and scheduling for surgical resection of the residual tumour - things took a negative turn. 

Due to the location of the tumour, near the spine, major blood vessels and nerves, surgery was going to be complex, requiring multiple surgeons. 

While this was scheduled, which took 2 months since diagnosis, the tumour had regrown rapidly. 

Surgery was no longer possible. Frustratingly, it wasn't necessarily that surgical resection with wide margins was impossible due invasion or spread - it was a case of a spinal surgeon and thoracic surgeon needing to work in the same area via different incisions. The surgeons believed this was foo complicated and risky. 

So she was immediately started on chemo in early December. Unfortunately there was no time to preserve fertility prior to chemo due to how rapidly the tumour was regrowing. 

So she/we made the choice, and she started AIM (Doxorubicin, ifosfamide, mesna) on a 21 day cycle for 6 cycles, the next week. 

Chemo to hopefully shrink the tumour enough to make surgery possible. 

This was difficult. Many months of waiting only to be hit by bad news, and then to make a life altering decision without time to contemplate. 

I can't scream this enough - advocate for your own health, or on your loved ones behalf of needed. 

I won't go into it here, but the communication between hospital and McMillan was terrible. As lovely as the McMillan nurse was as a person, the entire McMillan nurse system failed us miserably. 

Chase surgeons, oncologist, appointments, results - chase constantly. 

She started her first chemo infusion and cried. Tears of happy relief. Finally, something was actually being done. 

I don't want anyone else to experience what my love felt that day. Joy at the thought of chemo because the system let her down for so many months. 

She dealt with cycles 1 & 2 of chemo superbly. Honestly beyond even the oncologists expectations. Yes, serious nausea and tiredness while having the chemo, but she bounced back quite literally the next day. 

She started losing hair slowly after 10 days. By 15 days chunks were falling out. Even though you know it's coming, it's still distressing. 

I shaved her head. We shared the loved. It was the single most difficult thing I've ever done, I felt like I was hurting her by shaving her, it felt awful. But I had to do it, she said she would only want me to do it and she was so thankful, and we shared so much love in that moment. 

She had a scan after 2 rounds. Unfortunately, no shrinkage.

But the tumour didn't grow either, and it was previously rapidly growing. Also, it hasn't spread anywhere. 

This felt like a punch to the gut. Shrinking and surgery is what we need. Stability wont last very long with her type of sarcoma. 

She continued with the chemo, given it had some effect and she tolerated it well. 

Cycle 4&5 were much the same. Very nauseated, vomity and tired during the infusions. She still recovered super quickly though, literally coming home after 3 days of minimal eating at hospital to demolish 2 packets of ramen with fried egg!

Unfortunately she had bad mouth ulcers for a week following chemo infusions. She got a special mouth wash to help. 

After cycle 5 they did another scan. 

The consultant greeted us with "so, scans look good". I couldn't believe it, it felt like the biggest victory in my entire life. It wasn't massive, but the tumour had shrunk slightly and changed density. 

A tiny shrinking, a tiny victory, after 6 months at this point of heartache I can't even describe the happiness. 

At this point we asked the oncologist about a second opinion on surgery. He agreed enthusiastically to our suprise, and referred her promptly. 

In the meantime, she finished cycle 6 of 6 in march 2024. 

Chemo was rough. But honestly, we were fortunate. She coped well, no major complications or low blood counts, no truly horrific side effects. If anything, it was a few months of stability which allowed us to just breathe. Knowing what's happening for a few months ahead of time let us just crack on with making the most of each day. 

The hospital arranged a video call with a surgical registrar. They had a look at her most recent CT scan (at that point a month old) and were cautiously optimistic that they could complete surgery following MDT. 

They intended to use a different technique. And as they are dedicated sarcoma thoracic specialists rather than thoracic surgeons who also do sarcoma - they could complete resections which were more tricky. 

They wanted more scans, and MRI, at the hospital. This was arranged, she had the scan just after Easter. 

We await to hear back. They've left us hanging for 2 weeks now promising to get back to us, so I'm not really sure what to make of it all. 

It's a glimmer of hope. But its difficult to once again be living with an uncertain about surgery. 

In the meantime, her oncologist has spoken to the medical oncology team and the surgeons are to agree next steps. 

Regardless of surgery coming or not - they agree radiotherapy should be performed first. Hopefully to further shrink the tumour and make surgical margins "dead". 

We have an initial appointment with radiotherapy on Tuesday, 22nd April. 

And we continue to chase and await news about surgery. 

So, quite the 6ish months as you can imagine. We're fortunate and I keep reminding myself of that, my fiancé is really quite well right now and she is able to get by just fine.  But long, constantly twisting journey takes a real toll. 

We've gone from health to suddenly and thematically being taken sick. Told it wasn't cancer, and then later told it was cancer. We've waited diligently hoping the system would work, only for cancer to be so aggressive that the system couldn't keep up. We've had to mourn for a baby we were going to have around now, and accept we'll never know what it's like to have a birth child. We've had disappointing results making you feel as if the torture of chemo is pointless. Only to have a glimmer of hope reappear.

And that's where we are. Completely adrift in the unknown, but there is still hope in the horizon. 

I'll likely provide further updates occasionally. 

I send you all the very best with your own journey through cancer.