Hi
I just wanted somewhere to write this as I fluctuate between feeling devastated and so angry at the processes my husband has had to endure as a very unwell man!
As an IT guy his role includes a lot of phone discussions. He was (eventually) diagnosed with stage 2 orophyrangeal cancer in June (3 months after calling his GP about swallowing issues). No nodes were impacted do it looked good for treatment.
He was originally told he was having a laryngectomy, a shock to hear as we thought chemotherapy would be first, with radiotherapy. We were informed it was in a tricky place and didn’t look overly aggressive so surgery was a better option. It would be a huge operation and require rebuilding his food pipe as they’d need to get to the tumour. This was incredibly hard to accept for him as he’s a linguist and language, discussion etc is so important in his life. He used to privately tutor in French and Italian and can also speak German and Spanish, all fluently so it was devastating! That’s without even considering eating, taste and smell which would be impacted also. We spent weeks travelling 60 miles each way to meetings and scans etc. He even had to go there for Covid tests rather than a local hospital.
Then, we arrived for a visit where we thought we were meeting with a thoracic surgeon, we were told instead that the surgery was off and only palliative care was an option. We were told that curative radiotherapy was too risky due to past treatment for a previous cancer when he was a teenager. We were told this at the end of August, the cancer was now stage 4 with nodes impacted and he’d had no treatment at all, apart from a feeding tube & meal replacement drinks which I had to beg for as they didn’t want him doing it at home (he’s managed it with no problem so far). I’m sounding a little bitter I know. To be honest, this has been handled poorly and everything which had been done, we have pushed for as they were basically going to let him die without trying! He’s thankfully now on a full (not palliative) chemotherapy regimen & we’re raising money for a different type of radiotherapy which will greatly reduce any issues from the previous treatment.
I don’t know if he will survive, the odds are against him, mainly, I feel, because of all the delays in treatment. I genuinely thought he was going to die every night before the chemotherapy started.
I really struggle sometimes. I feel useless and exhausted, some days I feel guilty because I think of getting away so I can have some time away from it all. Lockdown had exacerbated everything because we’re self isolating due to the risk to him (he’s also a transplant recipient).
We have no idea what the future holds and we still live out daily life, laugh, talk, share a lot. The spectre of cancer hangs there all the time and at night, my mind turns to darker thoughts about how unwell he may get if the treatments fail, the pain and discomfort of throat cancer, how he’ll breathe and how the hell I’ll get by without him. We talk about everything, from the downright daft to the cerebral. He’s really my best friend in the world!
Anyway, I just needed to put this in words.
Best wishes and kind thoughts to you all. X
Oh Uzume7 my heart's breaking for you both. What an ordeal. No wonder you needed to vent on here. I can empathise with your frustrations to a degree. My husband's career in IT focused on telecoms networks and voice comms. His glioblastoma has significantly impacted his speech and language centre (Brocas Area). As if the tumour wasn't cruel enough in such a short space of time it took his entire career away and will within the next year take him too unfortunately.
All I can say is keep talking to each other. Keep having a laugh. Keep being there for each other. My husband has been shutting me out and the silence is deafening.
Hang in there. This is a great forum to vent via as we are all in this together and all just want to be there for our partners.
Big hugs to you both
x
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