The treatment conversation I and II
29.3.18 was a busy day!
Started off with the UCLH gynae oncology surgeon (see Kicking off) and it was a relief to finally reach the talking about treatment stage . I'd been holding my breath for a very long time by now, while I felt the cancer romping away. NHS target for GP to treatment: max = 62 days. GP to treatment conversation - actual = 68 days. Spoiler alert - GP to treatment = actual = 76 days.
But the expectation was for treatment - yes! Good news!
When I asked about prognosis if I didn't have treatment, she looked taken aback and changed from being cool, collected and completely in charge of her brief to being uncertain - for her, treatment was a no-brainer. She recommended three cycles of chemotherapy to shrink and 'melt away' as much as possible followed by major surgery to root out as much as possible, then three more cycles of chemo. She said that the research shows equal outcomes for chemo-surgery-chemo as surgery-chemo and the waiting time for the former would be a week shorter. I just lapped it up.
There are a lot of scary and unpleasant things about the surgery - I'm going to have to reduce my idea of my 'natural weight' I think - how many kilograms do spleen + womb + ovaries + gut sections + peritoneum + omentum (+ remaining tumours of course) add up to?
But for now this is partly speculation so I'm tucking it away in the back of the mind cupboard. There will be a CT scan after the first three chemo cycles to see how effective it's been and therefore what actually needs to be done under the knife and the rib spreaders and the ....uggh. I'll see the surgeon after the CT scan - let's leave it till then. Having said that, I'm holding onto one positive observation - they couldn't see lymph node involvement on the scans. If there's still no apparent involvement when my insides are open to the air, I should keep my lymph nodes, therefore less risk of developing lymphoedema. And here's another good thing - when they strip out your peritoneum, you naturally reperitonealise (!!!) within 48 hours - although the replacement doesn't come with a non-stick coat.
Pencilled in surgery date is 13 June which in theory leaves our summer week in St Petersburg free, but there are some strong reasons why it might not be a good idea to go - boohoo.
The chemo is to be 'carbo taxol', a combination of carboplatin and paclitaxel at three-weekly intervals.
Paclitaxel comes from the Himalayan Yew Taxus yunnanensis aka T. wallichiana. Turns out it's on the IUCN Red List partly due to exploitation for my cytotoxic cancer drug...will have to think about the moral implications of this quite hard. Pic = a specimen from Hillier Gardens in Romsey. It has red berries that look like those of our Taxus baccata.
Next up was a meeting with a member of the Clinical Nurse Specialist team. Luke had come with us for this. I'd concluded that he shouldn't come in to the gynae oncology surgical consultation in case it made the whole thing more upsetting and this had been the right decision, as there were a few shocks. But I very much wanted him, and Chris of course, to meet the CNS - I'd had a lot to do with the equivalent nurses when looking after my dad and thought it would be useful for them to have a face-to-face. CNSs have a role in looking after the family too. There was still a moment , when my concern for Luke's feelings and wellbeing had me welling up in a way that concern for myself has not done - weird...
On this occasion, her main focus was on side-effects of the chemo and how to deal with them, as well as talking about my current symptoms and how to manage them. She warned that it often takes two cycles of chemo before these symptoms start to improve which felt a bit gloomy at the time. BUT! Spoiler alert: I'm getting some very welcome symptomatic relief after the first cycle that's got to be hopeful.
Some key things - paced exercise good, but it's a fine balance between chemo fatigue and keeping some muscle capability. I have to try to maintain my weight, and I've already been doing my best, but for the first time in my life, it's quite hard work - I'm hovering resolutely at the low end of my 'normal range' despite eating meals and fish and elevenses and teas with cake and chocolate. I'll report on my personal side-effect reality when I've experienced it.
After these long appointments, which were familiarly delayed, and which took place in an underground department in the Elizabeth Garrett Anderson building, it was a huge relief to emerge into the rainy light and hit Itsu for a feed!
Started off with the UCLH gynae oncology surgeon (see Kicking off) and it was a relief to finally reach the talking about treatment stage . I'd been holding my breath for a very long time by now, while I felt the cancer romping away. NHS target for GP to treatment: max = 62 days. GP to treatment conversation - actual = 68 days. Spoiler alert - GP to treatment = actual = 76 days.
But the expectation was for treatment - yes! Good news!
When I asked about prognosis if I didn't have treatment, she looked taken aback and changed from being cool, collected and completely in charge of her brief to being uncertain - for her, treatment was a no-brainer. She recommended three cycles of chemotherapy to shrink and 'melt away' as much as possible followed by major surgery to root out as much as possible, then three more cycles of chemo. She said that the research shows equal outcomes for chemo-surgery-chemo as surgery-chemo and the waiting time for the former would be a week shorter. I just lapped it up.
There are a lot of scary and unpleasant things about the surgery - I'm going to have to reduce my idea of my 'natural weight' I think - how many kilograms do spleen + womb + ovaries + gut sections + peritoneum + omentum (+ remaining tumours of course) add up to?
But for now this is partly speculation so I'm tucking it away in the back of the mind cupboard. There will be a CT scan after the first three chemo cycles to see how effective it's been and therefore what actually needs to be done under the knife and the rib spreaders and the ....uggh. I'll see the surgeon after the CT scan - let's leave it till then. Having said that, I'm holding onto one positive observation - they couldn't see lymph node involvement on the scans. If there's still no apparent involvement when my insides are open to the air, I should keep my lymph nodes, therefore less risk of developing lymphoedema. And here's another good thing - when they strip out your peritoneum, you naturally reperitonealise (!!!) within 48 hours - although the replacement doesn't come with a non-stick coat.
Pencilled in surgery date is 13 June which in theory leaves our summer week in St Petersburg free, but there are some strong reasons why it might not be a good idea to go - boohoo.
The chemo is to be 'carbo taxol', a combination of carboplatin and paclitaxel at three-weekly intervals.
Paclitaxel comes from the Himalayan Yew Taxus yunnanensis aka T. wallichiana. Turns out it's on the IUCN Red List partly due to exploitation for my cytotoxic cancer drug...will have to think about the moral implications of this quite hard. Pic = a specimen from Hillier Gardens in Romsey. It has red berries that look like those of our Taxus baccata.
Next up was a meeting with a member of the Clinical Nurse Specialist team. Luke had come with us for this. I'd concluded that he shouldn't come in to the gynae oncology surgical consultation in case it made the whole thing more upsetting and this had been the right decision, as there were a few shocks. But I very much wanted him, and Chris of course, to meet the CNS - I'd had a lot to do with the equivalent nurses when looking after my dad and thought it would be useful for them to have a face-to-face. CNSs have a role in looking after the family too. There was still a moment , when my concern for Luke's feelings and wellbeing had me welling up in a way that concern for myself has not done - weird...
On this occasion, her main focus was on side-effects of the chemo and how to deal with them, as well as talking about my current symptoms and how to manage them. She warned that it often takes two cycles of chemo before these symptoms start to improve which felt a bit gloomy at the time. BUT! Spoiler alert: I'm getting some very welcome symptomatic relief after the first cycle that's got to be hopeful.
Some key things - paced exercise good, but it's a fine balance between chemo fatigue and keeping some muscle capability. I have to try to maintain my weight, and I've already been doing my best, but for the first time in my life, it's quite hard work - I'm hovering resolutely at the low end of my 'normal range' despite eating meals and fish and elevenses and teas with cake and chocolate. I'll report on my personal side-effect reality when I've experienced it.
After these long appointments, which were familiarly delayed, and which took place in an underground department in the Elizabeth Garrett Anderson building, it was a huge relief to emerge into the rainy light and hit Itsu for a feed!
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