A couple of months ago I nominated H to be a torch-bearer for the 2012 Olympics. She's got an email today saying yes please carry our torch for us. Now on the one hand the Olympics is a massive waste of money, the kowtowing to Olympic officials is grotesque, the logo (which appears on the torchbearers' official shirts) is obscene, the torch looks like a cheese-grater, and they wouldn't even sell me tickets for any of the events I wanted to see. On the other hand I am well chuffed.
July looks rather distant from here. Keep well H.
Monday, 12 December 2011
Tuesday, 6 December 2011
The wig is the biz
H had her wig fitted today. There's a more hair at the front than I've seen on her before: the wig guy has been cautious about cutting it because it isn't going to grow, but otherwise it looks exactly like her own hair.
Meanwhile, she's been having two weeks of daily radiotherapy on the lump on the side of her head. She chose electron beam therapy this time because the x-ray therapy she had on her other head lesion made her feel sick. This should stop the lump growing, at the cost of another bald path. She's lost most of her hair on Paclitaxel, so it doesn't make much difference - huzzah for the wig. Her bald head is as pretty as she is, but I suppose it would be a bit much to go out in public with the tumours on show.
The wig guy chatted away as he cut about all the pop stars whose hair he's done. Who knew that Adam Ant was always as bald as a coot?
ok, I admit I made that up.
Meanwhile, she's been having two weeks of daily radiotherapy on the lump on the side of her head. She chose electron beam therapy this time because the x-ray therapy she had on her other head lesion made her feel sick. This should stop the lump growing, at the cost of another bald path. She's lost most of her hair on Paclitaxel, so it doesn't make much difference - huzzah for the wig. Her bald head is as pretty as she is, but I suppose it would be a bit much to go out in public with the tumours on show.
The wig guy chatted away as he cut about all the pop stars whose hair he's done. Who knew that Adam Ant was always as bald as a coot?
ok, I admit I made that up.
Monday, 28 November 2011
Hair
H has lost a lot of hair, and has taken to wearing a bobble hat. She looks good in it. On Friday we visited a wig shop in Fulham: the guy showed us something much more realistic than the NHS offering, and, naturally, much more expensive. We can afford it, and it will be good for H to look like her old self. She'll be going back the week after next for a fitting.
We stopped for lunch at the River Cafe, which is also very expensive (albeit not on the same scale) and worth the money.
H's arm has settled down after the operation, but is no better than before. There's still some scope for improvement as any remaining inflammation subsides.
We stopped for lunch at the River Cafe, which is also very expensive (albeit not on the same scale) and worth the money.
H's arm has settled down after the operation, but is no better than before. There's still some scope for improvement as any remaining inflammation subsides.
Monday, 14 November 2011
Minor operation
H had her microdiscectomy today. It seemed to take a long time, but she's dodged the very small risk of tetraplegia: we have to wait a few days to find out how well it's worked.
While I was waiting, a trolley came round loaded to the gunnels with sweets, crisps and biscuits, on sale mainly to visitors. Is this the NHS trying to ensure future business?
Update: I wasn't paying enough attention - the procedure was a foraminotomy not a microdiscectomy. Which H points out means cutting a hole in a hole.
While I was waiting, a trolley came round loaded to the gunnels with sweets, crisps and biscuits, on sale mainly to visitors. Is this the NHS trying to ensure future business?
Update: I wasn't paying enough attention - the procedure was a foraminotomy not a microdiscectomy. Which H points out means cutting a hole in a hole.
Fog on the Tyne
We went to the North-East for the weekend to visit H's family and friends. Long Sands beach is good on a warm November day. The Lost World crazy golf course is the best I&S have played on - the obstacles are carefully configured so that if you get your entry shot right you have a good chance of a hole in one. The Grand Hotel in Tynemouth has, er, good and less good points.
Whenever we do anything like this, it could be the last time.
Whenever we do anything like this, it could be the last time.
Monday, 7 November 2011
In hospital
I've taken H to hospital because she's running a temperature - it's probably just a cold, but on chemotherapy it could be febrile neutropenia...
Update: ... the hospital says cold, but gave H oral antibiotics to be on the safe side. We got back at 2:45am. Which might not be the best treatment for it.
Update: ... the hospital says cold, but gave H oral antibiotics to be on the safe side. We got back at 2:45am. Which might not be the best treatment for it.
Monday, 31 October 2011
Paclitaxel update
Some patients - about 10% according to the chemotherapy nurse - have a severe allergic reaction to paclitaxel. To ameliorate this, before the chemotherapy itself the patient is given a steroid, an antihistamine, and pyridoxine. But H seemed to have no problems. Now we wait to see what effect the paclitaxel has on the cancer.
She's having an MRI scan tomorrow in preparation for a microdiscectomy. She doesn't complain much, but it would be a big improvement to her quality of life if her arm could be settled down.
She's having an MRI scan tomorrow in preparation for a microdiscectomy. She doesn't complain much, but it would be a big improvement to her quality of life if her arm could be settled down.
Friday, 21 October 2011
Paclitaxel
H is done with Caelyx. She's having a week off and will start on Paclitaxel next week. This will be a weekly treatment with a break every fourth week. Unless she has a bad reaction to it, in which case we'll consider alternatives - her colleague S, who does a lot of breast cancer treatment, suggests Abraxane as a version of the drug which is less likely to educe an allergic reaction.
One disadvantage is that she may lose her beautiful hair, which is already thinner than it was. She's philosophical about that, she's had plenty of enjoyment from it already.
Her hands, elbows, knees and feet (which got beaten up by the run) should recover under the new treatment. We don't know how effective it will be against the disease.
One disadvantage is that she may lose her beautiful hair, which is already thinner than it was. She's philosophical about that, she's had plenty of enjoyment from it already.
Her hands, elbows, knees and feet (which got beaten up by the run) should recover under the new treatment. We don't know how effective it will be against the disease.
Wednesday, 19 October 2011
Caelyx
The side effects of Caelyx have been getting worse - H has very sore hands, elbows and knees. She passes all bottles and containers to me to open. And she's got a chronic infection under a big toenail. And the effectiveness of the treatment seems to have decreased - the second lump on her scalp has been growing. We're seeing her oncologist today and we'll discuss changing to a different treatment.
Also, she's had some bleeding from the newly irradiated lump on her scalp. She says this is a consequence of skin damage from the radiotherapy, not the cancer itself.
Also, she's had some bleeding from the newly irradiated lump on her scalp. She says this is a consequence of skin damage from the radiotherapy, not the cancer itself.
8k in Amsterdam
We went to Amsterdam for a long weekend. We've been twice before at this time of year, mainly for me to run the marathon, but this time we ran the 8km event together. H was worried that she'd finish last, or nearly so, but we were well up the field, finishing in 52 minutes flat. That is an awesome achievement considering the handicaps H faces.
She's been below her best for a couple of days since - sore feet and fatigue - but it's worth it for her to feel alive running.
She's been below her best for a couple of days since - sore feet and fatigue - but it's worth it for her to feel alive running.
Wednesday, 28 September 2011
Scalp radiotherapy
H started a daily course of radiotherapy early last week on the tumour on top of her head. I went along for the first session and was allowed in the room until just before they turned the machine on. This one is less technological: there's nothing sophisticated worth doing, they're just irradiating a circle centred on the tumour.
H will have a break for a few days now to avoid interaction with tomorrow's chemotherapy, then more radiation next week. The end result will be that the tumour will, we hope, stop growing and eventually shrink, and that H will have a bald patch around it. This is worth it because there's a danger that the tumour would ulcerate - break through the skin - if left untreated.
We looked at getting an intralace wig, which seems like a good option if you've got a bald patch with sufficient hair around it. But there's not much point if H is going to have to switch chemotherapy soon to something that makes her bald.
H will have a break for a few days now to avoid interaction with tomorrow's chemotherapy, then more radiation next week. The end result will be that the tumour will, we hope, stop growing and eventually shrink, and that H will have a bald patch around it. This is worth it because there's a danger that the tumour would ulcerate - break through the skin - if left untreated.
We looked at getting an intralace wig, which seems like a good option if you've got a bald patch with sufficient hair around it. But there's not much point if H is going to have to switch chemotherapy soon to something that makes her bald.
Prognosis
We had a meeting with H's consultant today: for the first time H asked about her prognosis. She asked because we've been planning some home improvements and H is thinking about how the building timetable might interact with her disease timetable.
The consultant was willing to be frank, but not specific. She says that she thinks over the next two or three months Caelyx will become less effective in inhibiting progression. In due course she'll switch H onto Paclitaxel. And when that stops working, she'll try Pazopanib. At some point nothing will work.
Meanwhile the consultant thinks it better to treat H with as much Caelyx as she can tolerate than to ease up for surgery on the lung metastasis. Additionally the surgeon she consulted is concerned that there may be adhesions resulting from radiotherapy that would make it more difficult to remove the tumour. Radiofrequency ablation is another option, but again the consultant would prefer not to risk delaying chemotherapy. Her recommendation is that we not worry about the lung met for now: she's more concerned about suppressing further metastases.
Meanwhile, H thinks the injection she had to her neck has improved her arm a bit, but not as much as she'd like. She wants the neurosurgeon to give further consideration to microdiscectomy.
H talked to her GP about her sore toenail. He's willing to cut some of it off, but concerned that it may take months to heal.
My guess is that she'll accept her consultant's treatment recommendation. And leave her toe alone. And we'll go ahead with the building work.
The consultant was willing to be frank, but not specific. She says that she thinks over the next two or three months Caelyx will become less effective in inhibiting progression. In due course she'll switch H onto Paclitaxel. And when that stops working, she'll try Pazopanib. At some point nothing will work.
Meanwhile the consultant thinks it better to treat H with as much Caelyx as she can tolerate than to ease up for surgery on the lung metastasis. Additionally the surgeon she consulted is concerned that there may be adhesions resulting from radiotherapy that would make it more difficult to remove the tumour. Radiofrequency ablation is another option, but again the consultant would prefer not to risk delaying chemotherapy. Her recommendation is that we not worry about the lung met for now: she's more concerned about suppressing further metastases.
Meanwhile, H thinks the injection she had to her neck has improved her arm a bit, but not as much as she'd like. She wants the neurosurgeon to give further consideration to microdiscectomy.
H talked to her GP about her sore toenail. He's willing to cut some of it off, but concerned that it may take months to heal.
My guess is that she'll accept her consultant's treatment recommendation. And leave her toe alone. And we'll go ahead with the building work.
Thursday, 8 September 2011
Six months
It's six months since diagnosis. H has got neuropathic pain in her left arm, like bad pins and needles, occasional stabbing back pain when she runs, a sore toenail, and assorted cuts and bruises that heal slowly. And she's recovering from a cold.
On Monday she had a PET scan. There was good news: the tumours in her vertebrae are showing no activity: apparently the radiotherapy has stopped them for the time being. So the fear that she will be paralysed by spinal cord compression has receded. She has one active tumour in her lung, and two on her scalp - one very obvious one on top of her head, and a smaller lump on the side of her head.
It should be possible to stop these lumps growing too with some sort of radiotherapy: H is considering the technological options. Treating the lung tumour will cause some collateral lung damage, and treating the scalp tumour will leave bald patches. We're looking into ways to conceal them.
If all the significant tumours can be stopped, H can go on less frequent chemotherapy, allowing her general health to improve. She had chemotherapy today, and will have more in 3 and 6 weeks if her platelet and neutrophil counts hold up. Then we'll think again.
Regarding the symptoms I mentioned at the start. The neuropathic pain can plausibly be attributed to some combination of radiation myelopathy, which should improve with time, and a bulging cervical disc unrelated to the cancer. H may have a nerve injection to reduce the discomfort. The stabbing pain in her back may be caused by a bare rib-end where the bone has been eaten away. And she may take her somewhat ingrowing toe-nail to her GP. So it's all minor, albeit unpleasant to live with.
Overall, things now look much better than we expected they would. There's no prospect of a cure, but there is some time.
On Monday she had a PET scan. There was good news: the tumours in her vertebrae are showing no activity: apparently the radiotherapy has stopped them for the time being. So the fear that she will be paralysed by spinal cord compression has receded. She has one active tumour in her lung, and two on her scalp - one very obvious one on top of her head, and a smaller lump on the side of her head.
It should be possible to stop these lumps growing too with some sort of radiotherapy: H is considering the technological options. Treating the lung tumour will cause some collateral lung damage, and treating the scalp tumour will leave bald patches. We're looking into ways to conceal them.
If all the significant tumours can be stopped, H can go on less frequent chemotherapy, allowing her general health to improve. She had chemotherapy today, and will have more in 3 and 6 weeks if her platelet and neutrophil counts hold up. Then we'll think again.
Regarding the symptoms I mentioned at the start. The neuropathic pain can plausibly be attributed to some combination of radiation myelopathy, which should improve with time, and a bulging cervical disc unrelated to the cancer. H may have a nerve injection to reduce the discomfort. The stabbing pain in her back may be caused by a bare rib-end where the bone has been eaten away. And she may take her somewhat ingrowing toe-nail to her GP. So it's all minor, albeit unpleasant to live with.
Overall, things now look much better than we expected they would. There's no prospect of a cure, but there is some time.
Friday, 5 August 2011
Pins and Needles
We watched an outdoor production of Macbeth on Monday: I was glad to have seen it but I thought it tactless of him to soliloquize on the theme "she should have died hereafter".
H was troubled by pins and needles in her feet: she's had episodes of this before, particularly when bending her neck, but this was worse. She suspected a new growth impinging on her spinal cord, and feared imminent paralysis. The hospital gave her an MRI scan on Tuesday morning, which happily showed no progression and no new spinal lesion.
This may be a side effect of the radiotherapy she had in March - "transient radiation myelopathy".
H was troubled by pins and needles in her feet: she's had episodes of this before, particularly when bending her neck, but this was worse. She suspected a new growth impinging on her spinal cord, and feared imminent paralysis. The hospital gave her an MRI scan on Tuesday morning, which happily showed no progression and no new spinal lesion.
This may be a side effect of the radiotherapy she had in March - "transient radiation myelopathy".
Friday, 29 July 2011
Talking to Children
On Wednesday we lay down on our bed with I&S and told them that H's bad back is caused by cancer, and that the doctors can't make it better but are giving H medicine to try to stop it getting worse.
We answered all their questions but they didn't ask about death, so we didn't say anything. S said that she'd seen a television programme where they could cure cancer, so we told her that not all cancer is the same but mummy is a cancer doctor herself and will get the best possible treatment. IA* said shouldn't we tell the other boys, so we told them we already had.
They realised it was serious, if only from our tone, and they both know already that people can die of cancer, but we had lots of hugs and they seem to have taken it very well.
About an hour later IA remarked on the lump on H's scalp, which he's not noticed before. So the conversation seems to have been well-timed.
Yesterday we took S to meet her best friend, who lives 20 miles away so they don't meet very often, in a park halfway between us (next to S's former school). Within minutes the friend came up to me and asked whether H has got cancer. Which she has.
*using initials to identify a grammatical subject goes wrong when the initial is 'I'. Hence 'IA'.
We answered all their questions but they didn't ask about death, so we didn't say anything. S said that she'd seen a television programme where they could cure cancer, so we told her that not all cancer is the same but mummy is a cancer doctor herself and will get the best possible treatment. IA* said shouldn't we tell the other boys, so we told them we already had.
They realised it was serious, if only from our tone, and they both know already that people can die of cancer, but we had lots of hugs and they seem to have taken it very well.
About an hour later IA remarked on the lump on H's scalp, which he's not noticed before. So the conversation seems to have been well-timed.
Yesterday we took S to meet her best friend, who lives 20 miles away so they don't meet very often, in a park halfway between us (next to S's former school). Within minutes the friend came up to me and asked whether H has got cancer. Which she has.
*using initials to identify a grammatical subject goes wrong when the initial is 'I'. Hence 'IA'.
Wednesday, 27 July 2011
Hypothermia
We went on holiday to Cornwall last week, with I&S (the other boys were still at school). On the Monday, we'd booked a surfing lesson. The weather - driving wind and rain - was perfect in the eyes of our instructor, but a bit on the cool side for us.
After the lesson, we got most of the way back to the surf shack (in the grounds of our hotel) before it all got too much for H and she sat down at the side of the path unable to go on. But after a rest, and encouraged by a kind dog-walking lady, she managed to totter the rest of the way to a hot drink at the shack, and thence to a long hot bath.
I was rather shaken. It's easy to forget that she's not physically as strong as she was. In future I shall try to dissuade her from doing physically challenging things other than ones she's really keen on.
After the lesson, we got most of the way back to the surf shack (in the grounds of our hotel) before it all got too much for H and she sat down at the side of the path unable to go on. But after a rest, and encouraged by a kind dog-walking lady, she managed to totter the rest of the way to a hot drink at the shack, and thence to a long hot bath.
I was rather shaken. It's easy to forget that she's not physically as strong as she was. In future I shall try to dissuade her from doing physically challenging things other than ones she's really keen on.
Saturday, 16 July 2011
Radiotherapy
I see that I forgot to mention that H has had a fortnight of radiotherapy (ten treatments) to her neck. We don't want to take any chances on spinal cord compression that high up.
Sore throat
H has been suffering for the last week and a half from a horrible throat infection, caused by a combination of damage to her throat from the radiotherapy and damage to her immune system from the chemotherapy. Strangely, referred pain in her ears is the worst part of it. Her consultant has agreed to defer the next round of chemotherapy, due last Wednesday, for a fortnight to give H a chance to recover. The downside of that is that in so far as the chemotherapy has been inhibiting disease progression (and no one knows how far that is) the disease will have a fortnight unchecked.
It seems to me that the infection may have been brought on by the 5k run. I don't know whether H would have done the run if she'd known this would have been the consequence.
We've booked a week's holiday in Cornwall starting tomorrow. H has perked up a bit today, so it looks like we'll be going.
It seems to me that the infection may have been brought on by the 5k run. I don't know whether H would have done the run if she'd known this would have been the consequence.
We've booked a week's holiday in Cornwall starting tomorrow. H has perked up a bit today, so it looks like we'll be going.
Monday, 4 July 2011
Race for Life
H ran the local "Race for Life" 5k yesterday - not as fast as last year, but very probably faster than anyone else in the middle of a 3-week Caelyx cycle. It was important to her, and I was proud of her, again.
Thursday, 23 June 2011
Olympic Tickets
I applied for assorted Olympic tickets in the first ballot, but got only the Judo tickets. H has had a look at what's on offer in the second ballot, and suggested I try again for Rowing and Athletics. She seems more optimistic than previously about her chances of having a use for the tickets.
C7
H (and I) had a meeting with her consultant yesterday, in which it was agreed that she should have an MRI scan of her troublesome neck, to help decide about radiotherapy. She's been getting occasionally pins and needles in the fingers of her left hand, suggesting that there may be some pressure on the nerve root. Followed by the latest dose of Caelyx.
There was no great urgency about the MRI scan, but the hospital rang this morning to say they had a free slot, so we went. The radiographer talked us through the scan results afterwards: the tumour on C7 (not C6 as previously reported: their miscount not mine) has grown since her first MRI scan on 3rd March: this may have happened while she was having radiotherapy lower down her spine, before she started chemotherapy. The tumour is impinging slightly on her spinal cord, and there's an (unrelated) slight bulge in the disc at the front of the spinal column which gives it less room to cope. Neither the radiographer or H thinks this is an immediate concern, but after discussion with the consultant it's been decided that H will have a radiotherapy-planning scan tomorrow. She wants to delay the radiotherapy itself for a few days while she canvasses views about its interaction with Caelyx.
There was no great urgency about the MRI scan, but the hospital rang this morning to say they had a free slot, so we went. The radiographer talked us through the scan results afterwards: the tumour on C7 (not C6 as previously reported: their miscount not mine) has grown since her first MRI scan on 3rd March: this may have happened while she was having radiotherapy lower down her spine, before she started chemotherapy. The tumour is impinging slightly on her spinal cord, and there's an (unrelated) slight bulge in the disc at the front of the spinal column which gives it less room to cope. Neither the radiographer or H thinks this is an immediate concern, but after discussion with the consultant it's been decided that H will have a radiotherapy-planning scan tomorrow. She wants to delay the radiotherapy itself for a few days while she canvasses views about its interaction with Caelyx.
Tuesday, 21 June 2011
PET/CT scan
H had another PET/CT scan yesterday. She was afraid that it would light up like a Christmas tree along her spine and ribs, so I was very pleased that it did no such thing. Her scalp tumour and one in her lung were bright, but the rest were dimmer than before - the radiotherapy has evidently been effective, and probably the chemotherapy too on most of the tumours. She tells me that the lung tumour can be removed surgically if it becomes problematic.
The CT part of the scan (they do both at the same time so they can compare features between the two images) showed a crack in the lateral process of a vertebra which would be a plausible cause of her new rib pain, so the radiotherapy she had last week was probably the wrong treatment. Never mind, I was happy. H, who has to live with the pain and incapacity of her spine cracking, less so.
The CT part of the scan (they do both at the same time so they can compare features between the two images) showed a crack in the lateral process of a vertebra which would be a plausible cause of her new rib pain, so the radiotherapy she had last week was probably the wrong treatment. Never mind, I was happy. H, who has to live with the pain and incapacity of her spine cracking, less so.
Wednesday, 15 June 2011
Radiotherapy
H is having radiotherapy today on her sore rib - this will probably be a single 'fraction', i.e. a one-off treatment. There's less need for precision in this area, so it won't be tomotherapy. We hope it will greatly reduce the rib pain she's been having.
The primary?
H has been looking at her scans. She now thinks the primary is the abdominal tumour discovered by her biopsy scan, and that it's been the cause of the neuropathic pain she's had for years. If this is right, the primary could have been discovered by the right scan five years ago (the MRI scan she had then was of her spine). If it had been found, it would have been removed surgically, and there would have been a significant chance of cure. It's distressing for H to think that she might be well now if she'd been more cautious about her own health.
Is this right? H thinks so, and she's an expert. On the other hand none of the experts who examined her five years ago, including herself, thought there was anything serious (her GP thought there might be a lipoma but was easily talked out of the idea). And the sarcoma specialist treating her hasn't pointed to the abdominal tumour as a likely primary.
H has always been mildly contemptuous of the overuse of scans, thinking them a poor substitute for medical thought. In this case, a precautionary scan might have been life-saving. But this case is fantastically rare.
If the abdominal tumour is the primary, it may have been caused by an IVU (Intravenous Urogram) H had when she was 7 or 8, to look for an underlying cause for a urinary infection. If so, that's an argument for doing fewer scans, on young people at least.
Is this right? H thinks so, and she's an expert. On the other hand none of the experts who examined her five years ago, including herself, thought there was anything serious (her GP thought there might be a lipoma but was easily talked out of the idea). And the sarcoma specialist treating her hasn't pointed to the abdominal tumour as a likely primary.
H has always been mildly contemptuous of the overuse of scans, thinking them a poor substitute for medical thought. In this case, a precautionary scan might have been life-saving. But this case is fantastically rare.
If the abdominal tumour is the primary, it may have been caused by an IVU (Intravenous Urogram) H had when she was 7 or 8, to look for an underlying cause for a urinary infection. If so, that's an argument for doing fewer scans, on young people at least.
Monday, 6 June 2011
Spinous process
The CT scan revealed a small fracture of the spinous process of H's sixth cervical vertebra. This accounts for the neck pain. It will have been caused by disease in the vertebra, as detected by the PET scan in March.
On the one hand, this is a minor (but painful) injury to an inessential structure. On the other hand, it's not reassuring to find that a pathological broken neck is good news.
No immediate treatment is required for it. But the fracture will probably not heal of its own accord; the doctors (including H) will consider radiotherapy. And the painful rib may need it too.
On the one hand, this is a minor (but painful) injury to an inessential structure. On the other hand, it's not reassuring to find that a pathological broken neck is good news.
No immediate treatment is required for it. But the fracture will probably not heal of its own accord; the doctors (including H) will consider radiotherapy. And the painful rib may need it too.
Tuesday, 31 May 2011
X-Ray
Relatively good news - an X-Ray shows no obvious progression of the disease. Pending the results of a CT scan, the plan is to persist with Caelyx with the addition of Zometa to address H's bone pain.
H is much happier - that's not just the X-Ray result, but also she's adjusted to her lowered expectations, and being with her colleagues at work makes her address her condition as a doctor more than a patient.
H is much happier - that's not just the X-Ray result, but also she's adjusted to her lowered expectations, and being with her colleagues at work makes her address her condition as a doctor more than a patient.
Pain
In the last few days H's back and rib pain has spread. This is bad in itself, but worse it suggests that the chemo isn't working. H, who has been amazingly strong up to now, is struggling to cope with it.
We're seeing the oncologist today. H is due for another dose of Caelyx tomorrow, but there may be a change of treatment plan.
We're seeing the oncologist today. H is due for another dose of Caelyx tomorrow, but there may be a change of treatment plan.
Redundant
Last Wednesday I went into the office and was given 12 weeks' notice of redundancy, together with an offer of nearly a year's salary. I'm not required to turn up for work in the meantime. My employer will pay for a lawyer to look at the offer. It all seems fair enough, but I'll see if the lawyer has anything to say.
During the interview the HR guy couldn't help telling me that he's being made redundant too - not voluntarily, but he seemed ok about it. The next day I got an email saying that my boss will be leaving the company "to pursue other opportunities". He has lost a political fight. I am well out of it.
During the interview the HR guy couldn't help telling me that he's being made redundant too - not voluntarily, but he seemed ok about it. The next day I got an email saying that my boss will be leaving the company "to pursue other opportunities". He has lost a political fight. I am well out of it.
Thursday, 19 May 2011
At Risk
I'm taking voluntary redundancy from my job in the City - the terms are generous enough and I wasn't planning to work till I dropped in any case. My motivation to do the work has disappeared, so there wasn't really a choice to be made. For the time being at least I will spend time with my family - I'm not finding it hard to fill the days.
Officially I am currently "at risk" of redundancy. I've got two weeks to find another role internally.
Officially I am currently "at risk" of redundancy. I've got two weeks to find another role internally.
Chemotherapy
H is being treated with Caelyx (pegylated liposomal doxorubicin), given once every three weeks. (The initial plan was to give it every four weeks because her blood platelet count was low, but it's recovered.) She's had two treatments so far, most recently a week ago. So far she's tolerated it quite well, and it seems to have made the lump on her scalp softer.
The drug is administered in the hospital's Oncology Outpatient department. The nurse inserts a cannula in the back of H's hand, and she gets 20mg of Dexamethasone (a corticosteroid) before the Caelyx. This is a large dose, primarily against anaphylactic shock, but also to reduce swelling of the tumour close to her spinal cord. The drugs are pumped into her from plastic drip bags, interspersed with bags of glucose solutions to flush the lines and her veins. The whole procedure takes about two and a half hours.
After the first treatment I collected a big bag of TTOs (drugs To Take Out) for her from the hospital pharmacy. More dexamethasone, and various drugs to mitigate the side-effects of the chemotherapy.
A week after her first treatment, she spent a night in hospital with a temperature, but it turned out to be nothing serious.
Her skin reaction to the radiotherapy was mild - it looked like a touch of sunburn - but it came back much worse after the first dose of chemotherapy. I learn that this "radiation recall" effect is well-known to oncologists. We've treated it with E45 cream.
This week H is tired but otherwise ok. She's been running and rowing, and we've planned a cycle ride together for tomorrow.
The drug is administered in the hospital's Oncology Outpatient department. The nurse inserts a cannula in the back of H's hand, and she gets 20mg of Dexamethasone (a corticosteroid) before the Caelyx. This is a large dose, primarily against anaphylactic shock, but also to reduce swelling of the tumour close to her spinal cord. The drugs are pumped into her from plastic drip bags, interspersed with bags of glucose solutions to flush the lines and her veins. The whole procedure takes about two and a half hours.
After the first treatment I collected a big bag of TTOs (drugs To Take Out) for her from the hospital pharmacy. More dexamethasone, and various drugs to mitigate the side-effects of the chemotherapy.
A week after her first treatment, she spent a night in hospital with a temperature, but it turned out to be nothing serious.
Her skin reaction to the radiotherapy was mild - it looked like a touch of sunburn - but it came back much worse after the first dose of chemotherapy. I learn that this "radiation recall" effect is well-known to oncologists. We've treated it with E45 cream.
This week H is tired but otherwise ok. She's been running and rowing, and we've planned a cycle ride together for tomorrow.
Wednesday, 4 May 2011
The Honeymoon
We went to the Maldives for eight days (not including a day travelling). It was perfect.
Medical advice (from H) was that business-class flights would be required. Plus a luxury villa, excellent food and wine, diving for me, spa treatments for her...
I felt slightly guilty for the first two days about leaving I&S behind, until I found out from the emails that they were getting much more attention staying with my relatives (thank you).
Medical advice (from H) was that business-class flights would be required. Plus a luxury villa, excellent food and wine, diving for me, spa treatments for her...
I felt slightly guilty for the first two days about leaving I&S behind, until I found out from the emails that they were getting much more attention staying with my relatives (thank you).
The Wedding
The wedding was great fun. It's not so hard to do if you've got enough money and you don't care about the napkin rings. Now that I'm an old hand, I recommend:
- Do it if you know you want to
- Write your own vows
- Include the children, if any
- Treat the reception as a party for your friends and family
Sunday, 3 April 2011
Wedding readings
Looking for readings for the ceremony, I came across this suggestion - C.S.Lewis in Mere Christianity on how a married relationship changes. For me, it's nothing like that - I am still in love with H. On the other hand, we're not married yet.
I read Lewis's The Problem of Pain many years ago: I'm even less convinced now than I was then. I find that after his wife died of cancer, he wrote another book, A Grief Observed, discussing his doubts.
Back to the present: we are going to have a short ceremony with no additional readings.
I read Lewis's The Problem of Pain many years ago: I'm even less convinced now than I was then. I find that after his wife died of cancer, he wrote another book, A Grief Observed, discussing his doubts.
Back to the present: we are going to have a short ceremony with no additional readings.
Wednesday, 30 March 2011
Crying
I've cried a lot - every day. Mostly when I'm alone and I think about the future. With Helen I can usually talk calmly about what may happen, and when I can't she's there for me.
H has cried much less, but when she does it takes her longer to recover. She accepts that she will lose her old age, but struggles with the thought of leaving her children to grow up without her.
Looking for wedding music, we listened to Fields of Gold sung by Eva Cassidy. That set us both of. We're having it anyway, crying at weddings is allowed. I looked her up: she died at 33 of melanoma.
H has cried much less, but when she does it takes her longer to recover. She accepts that she will lose her old age, but struggles with the thought of leaving her children to grow up without her.
Looking for wedding music, we listened to Fields of Gold sung by Eva Cassidy. That set us both of. We're having it anyway, crying at weddings is allowed. I looked her up: she died at 33 of melanoma.
Sunday, 27 March 2011
H's mother
H's mum J came down from the north-east the Sunday after the diagnosis - her friends very kindly drove her here - and will stay with us till after the wedding. She's always welcome to stay on account of spending her days looking for domestic chores to do.
Away from her familiar surroundings her memory is fading. She seems to have forgotten what brought her here. A few days ago she spoke to a nephew on the phone and told us afterwards that she'd just been talking to his brother, who died a few years ago. Perhaps this is not such a bad thing.
J is the most unadventurous person I've ever met - not at all like H. On Friday I tried to persuade her to come with us to see S's end-of-term assembly, but she wouldn't because she couldn't possibly get ready in time. This was over an hour before we were due to leave. But she perked up yesterday and joined a trip to the shoe shop - there is one interest she shares with H.
Away from her familiar surroundings her memory is fading. She seems to have forgotten what brought her here. A few days ago she spoke to a nephew on the phone and told us afterwards that she'd just been talking to his brother, who died a few years ago. Perhaps this is not such a bad thing.
J is the most unadventurous person I've ever met - not at all like H. On Friday I tried to persuade her to come with us to see S's end-of-term assembly, but she wouldn't because she couldn't possibly get ready in time. This was over an hour before we were due to leave. But she perked up yesterday and joined a trip to the shoe shop - there is one interest she shares with H.
Saturday, 19 March 2011
Radiotherapy so far
H has had three days of radiotherapy, with no side effects so far apart from being very tired on Thursday. Two days off now - cancer doesn't work weekends.
Thursday, 17 March 2011
The second biopsy - 4th March
S came back to us the day after the first biopsy to say that the tissue was necrotic and they'd have to do another biopsy. Dead cancer sounded good to me, but H told me it would be because the tumour had grown so fast it was unable to maintain blood supply to its interior. That's less good.
I took I&S with me to collect H afterwards. We told them mummy is having tests on her bad back. They were untroubled by the experience.
This time they biopsied the T8 tumour. That meant they had to leach the bone out of it over the weekend. On the Monday afternoon, we got a preliminary diagnosis of angiosarcoma, with the news that a sample had been sent to the expert at the Royal Marsden for a second opinion. H worked with him there early in her career, so she called him to say that the sample was hers. He called back (he's an important guy, his secretary places his calls for him) on the Friday to confirm the diagnosis.
I took I&S with me to collect H afterwards. We told them mummy is having tests on her bad back. They were untroubled by the experience.
This time they biopsied the T8 tumour. That meant they had to leach the bone out of it over the weekend. On the Monday afternoon, we got a preliminary diagnosis of angiosarcoma, with the news that a sample had been sent to the expert at the Royal Marsden for a second opinion. H worked with him there early in her career, so she called him to say that the sample was hers. He called back (he's an important guy, his secretary places his calls for him) on the Friday to confirm the diagnosis.
Prognosis
For the first few days, H's colleague S was handling her case. He sat down with us to discuss it. His summary - I quote the technical language verbatim - was "this is shit". Then he told us all the optimistic things he would say if the patient were not an expert.
Once we had the diagnosis of angiosarcoma, the sarcoma specialist took over. She declined to give a prognosis, saying that it's a very rare condition and every case is different.
However, it's not hard to find statistics on-line. Somehow I don't want to reproduce them here.
If H's cancer responds to chemotherapy, the statistics get better. Paclitaxel may be the first thing to try.
Once we had the diagnosis of angiosarcoma, the sarcoma specialist took over. She declined to give a prognosis, saying that it's a very rare condition and every case is different.
However, it's not hard to find statistics on-line. Somehow I don't want to reproduce them here.
If H's cancer responds to chemotherapy, the statistics get better. Paclitaxel may be the first thing to try.
Wedding Dress
When H tried on a dress for her wedding, the shop assistant complimented her on how much better it looked on her than on the dummy. H laughed it off - "That's because the dummy is bald and pasty". Then she thought about chemotherapy.
However, chemo won't start until after the wedding, and the side effects may not be that bad. H will be gorgeous either way.
However, chemo won't start until after the wedding, and the side effects may not be that bad. H will be gorgeous either way.
How rare is this?
According to medscape , your chances of getting any sort of sarcoma in the USA are about 3.1 in 100,000 each year. Out of the soft-tissue sarcomas analysed, 4.1% were angiosarcomas. So a bit more than 1 in a million people in the USA will be diagnosed with soft-tissue angiosarcoma each year. I suppose the UK is similar.
Furthermore, H is twenty years younger than the median age for this diagnosis, she has no risk factors we know of, and her T8 tumour is an unusual site (but we don't know what the primary is).
Furthermore, H is twenty years younger than the median age for this diagnosis, she has no risk factors we know of, and her T8 tumour is an unusual site (but we don't know what the primary is).
Wednesday, 16 March 2011
Wedding
We've been engaged for seven years without ever getting close to organizing a wedding. But we decided to do it within two days of getting the news. To start with it was going to be just the two of us plus witnesses: now it's expanded to a party for friends and family. I am proud and happy.
Tomotherapy
H had her first radiotherapy session today, with no immediate problems. The radiologist decided to treat her T12 tumour as well after all. The radiotherapy was followed by a CT scan to her brain, to check for any metastases there (though brain mets are uncommon with angiosarcoma). I'm a bit surprised that they're willing to irradiate her brain like that, but H tells me that it's a trivial concern by comparison.
Tuesday, 15 March 2011
Religion
When I told a deeply religious friend about it, I told her God had lost the plot on this one. I can do that, I don't believe in Her anyway. But my friend agreed, and she says it's ok to think that, God will understand.
I took H's mum to get her hair done in a nearby village. While that was going on, I went for a walk, and was attracted by a footpath signposted for the village church. I tend to follow the finger of fate on these things, so there I went. It was locked.
I took H's mum to get her hair done in a nearby village. While that was going on, I went for a walk, and was attracted by a footpath signposted for the village church. I tend to follow the finger of fate on these things, so there I went. It was locked.
Adrenaline - 2nd-4th March
For two days after getting the news I had no appetite for anything - I ate some dinner with the family and nothing else. H didn't eat much either.
On the 5th I felt more normal. That might be because I'd been telling people about the news, accepting the fact of it. Or it might just be time passing.
Scans
Two scans today. This morning was PET - positron emission tomography. Great technology - they inject fluorodeoxyglucose labelled with (short half-life) positron-emitting fluorine, and detect the matching pairs of gamma rays emitted when the positrons annihilate. So they get an image of where blood sugar is being taken up - and cancers use a lot of it.
H's scan showed the T8 tumour as the most active. And it found two small spots we didn't know about, one on a cervical vertebra and one on a rib. H tells me this is a good result, since it might have shown many more growths.
This afternoon was a heart MRI. Unexpectedly, I was allowed into the scanner room, having carefully emptied my pockets of anything metallic, and taken off my belt. It's like medicine in a science fiction film. It took an hour, so they must know a lot about her heart now. The point of the scan is that the primary could be in her heart, in which case it can't be doing much yet but they ought to know about it if they're going to operate on her at some time. No results yet, H may use her medical privileges to take a peek tomorrow.
H's scan showed the T8 tumour as the most active. And it found two small spots we didn't know about, one on a cervical vertebra and one on a rib. H tells me this is a good result, since it might have shown many more growths.
This afternoon was a heart MRI. Unexpectedly, I was allowed into the scanner room, having carefully emptied my pockets of anything metallic, and taken off my belt. It's like medicine in a science fiction film. It took an hour, so they must know a lot about her heart now. The point of the scan is that the primary could be in her heart, in which case it can't be doing much yet but they ought to know about it if they're going to operate on her at some time. No results yet, H may use her medical privileges to take a peek tomorrow.
Diagnosis and treatment plan - 10th March
It's angiosarcoma - something I'd never heard of before this week - a cancer of cells lining blood vessel walls. It's a rare cancer, and the way it's presented in H, with tumours in the muscles of her back and abdomen, is almost unknown. But the histopathologist here thinks that's what it is, and the expert in London, whom H knows personally, agrees. As well as the three muscle tumours there are two smallish growths in her lungs. And she has two cysts on her scalp, one of which seems to be growing and is probably the cancer too.
We went to the hospital today to discuss treatment with the doctors. Something needs to be done quickly about the main tumour because it's close to her spinal cord. We wanted to get it cut out, but the doctors say that's not best because it will be impossible to take out whole and cutting into it risks post-operative bleeding which could itself damage the spinal cord. The neurosurgeon talked us through the operation he could do to remove a vertebra and replace it with a metal cage, including some scans of someone he'd successfully done it to. This involves going in through the chest to reach the front of the vertebra, then through the to do the rest. We had no trouble agreeing that this seemed altogether too heroic for what would be a non-curative operation.
Instead H will have radiotherapy - a sophisticated version called 'tomotherapy'. The radiologist wanted to irradiate her T12 tumour as well as the T8 tumour, but H said no, it would be better to keep it for monitoring the effectiveness of chemotherapy. I was surprised how readily the radiologist changed her mind. It takes some time to set up the tomotherapy, so it will start on Wednesday 16th.
Both the sarcoma specialist who's now in charge of the case and the neurosurgeon had H take off her trousers so they could test her leg strength and reflexes. She is thinking of buying bigger pants. But they probably suspected already that she's a natural redhead.
We went to the hospital today to discuss treatment with the doctors. Something needs to be done quickly about the main tumour because it's close to her spinal cord. We wanted to get it cut out, but the doctors say that's not best because it will be impossible to take out whole and cutting into it risks post-operative bleeding which could itself damage the spinal cord. The neurosurgeon talked us through the operation he could do to remove a vertebra and replace it with a metal cage, including some scans of someone he'd successfully done it to. This involves going in through the chest to reach the front of the vertebra, then through the to do the rest. We had no trouble agreeing that this seemed altogether too heroic for what would be a non-curative operation.
Instead H will have radiotherapy - a sophisticated version called 'tomotherapy'. The radiologist wanted to irradiate her T12 tumour as well as the T8 tumour, but H said no, it would be better to keep it for monitoring the effectiveness of chemotherapy. I was surprised how readily the radiologist changed her mind. It takes some time to set up the tomotherapy, so it will start on Wednesday 16th.
Both the sarcoma specialist who's now in charge of the case and the neurosurgeon had H take off her trousers so they could test her leg strength and reflexes. She is thinking of buying bigger pants. But they probably suspected already that she's a natural redhead.
Timeline
I was planning to write this as a well-ordered account, but I'm not keeping up. So I'll mix up past (with dates in the title) and present, as they come.
Saturday, 12 March 2011
3rd March - H's mum
It's H's mother's birthday. H has to phone her, but she can't talk to her without giving her the news. It will be hard on her: she lost H's father to a heart attack when H was a teenager, and in the last few years the rest of her family has died.
H's mum has a friend living nearby who turns out not to be ex-directory. I phone her, explain the situation, and ask her to go round: she kindly agrees. Then I phone H's mum and give her the news.
Later, H calls her mum and has a long conversation. I call my younger sister, who is hosting a party for my mother on Sunday. She offers to tell my brother and older sister. I call my father. We agree not to tell my mother, whose memory is fading: she won't remember who H is.
H's mum has a friend living nearby who turns out not to be ex-directory. I phone her, explain the situation, and ask her to go round: she kindly agrees. Then I phone H's mum and give her the news.
Later, H calls her mum and has a long conversation. I call my younger sister, who is hosting a party for my mother on Sunday. She offers to tell my brother and older sister. I call my father. We agree not to tell my mother, whose memory is fading: she won't remember who H is.
Friday, 11 March 2011
3rd March - Biopsy
I send an email to work telling them I'll be at home with my sick wife. Then I get I&S ready (I always gets himself up, S will stay in bed for as long as she can) and take them to school - I mean to do more of the things I usually leave to H. Later we go to the hospital for a biopsy. We go into the oncology department through a staff entrance, but H comes to reception as a patient.
H is to have another scan before her biopsy. She's given a contrast solution to drink. When she goes for a refill at the desk one of her patients sees her and they chat. Meanwhile, I notice a man sitting on a motorized buggy next to the waiting area - it's too big to drive in. He's wearing a Silk Cut shell suit. I point this out to H when she sits down again, and we smile at his remarkable choice. Later, while H has gone for a chat with her colleagues, a nurse approaches Silk Cut and asks him to follow her. His buggy is too big, so he stands up, slowly, leaning heavily on his stick, and starts to shake. She persuades him to sit down and goes for a standard wheelchair.
H comes back from her scan and biopsy. The scan has revealed a third tumour in her abdomen. They've chosen to biopsy that one, since they'll be no bone in it so they can look at it at once without having to leach out the bone first.
H has looked at the new scan. She thinks it's melanoma.
H is to have another scan before her biopsy. She's given a contrast solution to drink. When she goes for a refill at the desk one of her patients sees her and they chat. Meanwhile, I notice a man sitting on a motorized buggy next to the waiting area - it's too big to drive in. He's wearing a Silk Cut shell suit. I point this out to H when she sits down again, and we smile at his remarkable choice. Later, while H has gone for a chat with her colleagues, a nurse approaches Silk Cut and asks him to follow her. His buggy is too big, so he stands up, slowly, leaning heavily on his stick, and starts to shake. She persuades him to sit down and goes for a standard wheelchair.
H comes back from her scan and biopsy. The scan has revealed a third tumour in her abdomen. They've chosen to biopsy that one, since they'll be no bone in it so they can look at it at once without having to leach out the bone first.
H has looked at the new scan. She thinks it's melanoma.
2nd March - What the scan showed
On the train home I met a long-time fellow commuter, who retired last year. We exchange pleasantries. I'm about to tell him why I'm on the train, but he interrupts me with something else. Good.
I wasn't needed to pick up the younger children - H brought them home: they were pleased to see me so early. I made the dinner, which neither of us had much appetite for.
H told me about the scan. It shows a lytic tumour on the right side involving the eighth thoracic vertebra (T8) and the rib, and another in the muscle lower down on the left side, close to T12 - this is the one causing the muscle swelling. It's impossible to tell what sort of cancer it is, or where the primary is. The best case would be lymphoma, but that's very unlikely. What H fears is melanoma - she's very fair-skinned - which would be quickly fatal with a strong possibility of brain metastases.
There's a biopsy booked for tomorrow, Thursday. The tissue will go the the histopathologists, whose job it is to work out what the cancer is.
I wasn't needed to pick up the younger children - H brought them home: they were pleased to see me so early. I made the dinner, which neither of us had much appetite for.
H told me about the scan. It shows a lytic tumour on the right side involving the eighth thoracic vertebra (T8) and the rib, and another in the muscle lower down on the left side, close to T12 - this is the one causing the muscle swelling. It's impossible to tell what sort of cancer it is, or where the primary is. The best case would be lymphoma, but that's very unlikely. What H fears is melanoma - she's very fair-skinned - which would be quickly fatal with a strong possibility of brain metastases.
There's a biopsy booked for tomorrow, Thursday. The tissue will go the the histopathologists, whose job it is to work out what the cancer is.
Side pain
H has a five-year history of neuropathic pain in her right side, around the bottom floating rib, which is slightly displaced. When it started she had an MRI scan which showed nothing wrong.
She's found it's alleviated by rowing - she rowed as a lightweight for Oxford, and has taken it up again in the last few years. It's aggravated by running - she ran the London marathon this year.
In November, it started getting worse and more widespread. In December she saw a rheumatologist and they agreed she should have physiotherapy. When it got worse again, she arranged a scan to check for joint damage, booked for Tuesday 1st March. By this time there was a detectable prominence of a back muscle on her left side, which she attributed muscle guarding. We went away skiing with the family and friends for half-term. H missed a couple of days when it was snowing - she gets snow-sick - but otherwise skied much better than I do, as usual.
She's found it's alleviated by rowing - she rowed as a lightweight for Oxford, and has taken it up again in the last few years. It's aggravated by running - she ran the London marathon this year.
In November, it started getting worse and more widespread. In December she saw a rheumatologist and they agreed she should have physiotherapy. When it got worse again, she arranged a scan to check for joint damage, booked for Tuesday 1st March. By this time there was a detectable prominence of a back muscle on her left side, which she attributed muscle guarding. We went away skiing with the family and friends for half-term. H missed a couple of days when it was snowing - she gets snow-sick - but otherwise skied much better than I do, as usual.
Thursday, 10 March 2011
About us
H is a consultant oncologist at a major teaching hospital. I am a banker, working in London. We have two children, I (boy, age 8) and S (girl, age 6). H has three boys from a previous relationship, J (age 17), and twins R and M (age 14), who live with us.
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