So there I am exhaling in delight and suddenly he started talking about my needing radiotherapy!
This was a shock because right from almost the start it had been evident that my whole breast would have to come off, with nothing left to radiate.
Off he went to check and kept coming back in to ask if we had any questions, but we hadn't. When he returned to confirm I wouldn't need radiotherapy, I had two questions which get gave me very short thrift with. My first question concerned the repeat prescription for tamoxifen and whether I had to pay for it. He snapped back that he didn't know about such things, but fortunately his registrar got the paperwork that I need to complete to avoid paying for tamoxifen for ten years. My second question was what to do if I experience serious side effects with the tamoxifen, and should I call his secretary or go to my GP? - and he said that the side effects were not compulsory. He really did seem so offhand and distracted this time, as if he was so weighed down with his own problems, which of course may be the case. He explained that my cancer has a 7% chance of spreading, but as I said! I would rather have the 7% chance that I know about than the many more percentages that I may not know about.
But in any case. The lightness of our step as we left the Arden Centre! Coupled with trying not to look too delighted, to all the people there whose news or outlook had not been so good. Once again, I feel so, so lucky.
Friday, September 4, 2015
The Watershed
So, everyone has been asking me for weeks now if I've heard anything back from America, from the oncologist about the Oncotype DX test. And I haven't chased it because deep down I feel that it's going to be ok, that I won't need chemotherapy, but also because I don't want to hear if I do!
The rose-tinted glow of my ignorance vanished when I saw several missed calls on my mobile phone and heard a message left by the oncologist's secretary, telling me I had an appointment on the third.
I knew that this was going to be it. The appointment was for quarter to twelve in the Arden Cancer Centre. I asked my inner spirit guide if I was going to need chemotherapy and the answer kept coming back, "No." Months ago I'd asked my inner guide if I had cancer and there was no resistance.
I didn't even take a diazepam tablet the night before the appointment, and slept well. The following morning I had butterflies, but again, didn't take anything to calm me as I had in the previous occasion.
This time the Arden Centre wasn't as jolly as it had been the first time. Perhaps on the first occasion, when I'd thought I was going to get some direction on my need to have chemotherapy, I had been imagining it as one of the circles of hell, and was pleasantly surprised by the pink and purple chairs and pretty lighting: the patients didn't look like cancer patients and the oncologist had been witty and charming.
This time it was different. The patients in the siting room looked much sicker, though to my satisfaction I could see them striding through into the secret area purposefully when the bell pinged and their names appeared on the big screen. Some had no or little hair. Some in wheelchairs. Some looking very, very sick.
And this time, the wait was far longer. On the previous occasion we had waited an hour, but this was approaching two hours when the oncologist finally stood at the clinic door and called my name. He apologised and bundled us into a small examination room, and had to sit on the examining couch while he ran through my notes, painstakingly. He clearly had no recollection of me as a person and spoke to me quite impersonally, and seemed preoccupied. Going over the same ground as last time was frustrating and then he seemed perturbed: he had two sets of graph results and I could see that one result was better than the other. Suddenly he realised that one set of results was not mine and he announced, quickly and concisely, that there was no benefit to my having chemotherapy.
The rose-tinted glow of my ignorance vanished when I saw several missed calls on my mobile phone and heard a message left by the oncologist's secretary, telling me I had an appointment on the third.
I knew that this was going to be it. The appointment was for quarter to twelve in the Arden Cancer Centre. I asked my inner spirit guide if I was going to need chemotherapy and the answer kept coming back, "No." Months ago I'd asked my inner guide if I had cancer and there was no resistance.
I didn't even take a diazepam tablet the night before the appointment, and slept well. The following morning I had butterflies, but again, didn't take anything to calm me as I had in the previous occasion.
This time the Arden Centre wasn't as jolly as it had been the first time. Perhaps on the first occasion, when I'd thought I was going to get some direction on my need to have chemotherapy, I had been imagining it as one of the circles of hell, and was pleasantly surprised by the pink and purple chairs and pretty lighting: the patients didn't look like cancer patients and the oncologist had been witty and charming.
This time it was different. The patients in the siting room looked much sicker, though to my satisfaction I could see them striding through into the secret area purposefully when the bell pinged and their names appeared on the big screen. Some had no or little hair. Some in wheelchairs. Some looking very, very sick.
And this time, the wait was far longer. On the previous occasion we had waited an hour, but this was approaching two hours when the oncologist finally stood at the clinic door and called my name. He apologised and bundled us into a small examination room, and had to sit on the examining couch while he ran through my notes, painstakingly. He clearly had no recollection of me as a person and spoke to me quite impersonally, and seemed preoccupied. Going over the same ground as last time was frustrating and then he seemed perturbed: he had two sets of graph results and I could see that one result was better than the other. Suddenly he realised that one set of results was not mine and he announced, quickly and concisely, that there was no benefit to my having chemotherapy.
Monday, August 24, 2015
Rollercoaster
The thing is, I am now in a state of constant flux.
On Friday evening, I left Pearl, Carole, Mary and Samina with a little angel each and went on my way. I felt fine, although on getting home the breast started flowing with fluid from underneath. Every time I moved it poured out and I had no choice but to lie on a towel to sleep. And in the morning (Saturday) we simply relaxed all day and did nothing and the leaking stopped. Perhaps, we thought, the leaking is naturally coming to an end. They'd told us that it would.
But on Sunday morning I awoke feeling terrible. Not sleepy, but terribly tired. And nauseous, although not quite the same nausea as when I knew I had cellulitis. The breast was also painful. I realised that I hadn't taken my antibiotics for some ten hours and sure enough when I took them the sickness seemed to recede. But the fatigue stayed in place, although I was cheered by a trip to see the children. Kept taking my temperature but it peaked at 36.8 ....98 degrees.
They have told me that it will take a couple of days for the infection to resume when my antibiotics finish tonight, but this indicates that it will start a lot quicker! All I can do is keep hydrated and wait.
Today I awoke feeling so much better, and it was brilliant to just feel "normal". A fair amount of breast leaking I notice, and also the breast is starting to feel quite hard on the underneath. The skin is soft all over and not painful and there is no redness. The scar area looks like a dusky, healthy lilac colour. The nipple has somewhat collapsed in on itself, but I'm not bothered really. I like this breast but I've come to accept the inevitable ...something isn't right and I can't imagine that it will ever be. People tell me not to be negative, but I'm just being realistic! The breast fills up with serum, and then it releases it through the scar tissue and I feel better, until it builds up again.
So I'm just enjoying the last few hours of being at home and feeling fairly normal before the inevitable trip back to hospital. I see the surgeon anyway on Thursday - the question is, what will happen before Thursday?
On Friday evening, I left Pearl, Carole, Mary and Samina with a little angel each and went on my way. I felt fine, although on getting home the breast started flowing with fluid from underneath. Every time I moved it poured out and I had no choice but to lie on a towel to sleep. And in the morning (Saturday) we simply relaxed all day and did nothing and the leaking stopped. Perhaps, we thought, the leaking is naturally coming to an end. They'd told us that it would.
But on Sunday morning I awoke feeling terrible. Not sleepy, but terribly tired. And nauseous, although not quite the same nausea as when I knew I had cellulitis. The breast was also painful. I realised that I hadn't taken my antibiotics for some ten hours and sure enough when I took them the sickness seemed to recede. But the fatigue stayed in place, although I was cheered by a trip to see the children. Kept taking my temperature but it peaked at 36.8 ....98 degrees.
They have told me that it will take a couple of days for the infection to resume when my antibiotics finish tonight, but this indicates that it will start a lot quicker! All I can do is keep hydrated and wait.
Today I awoke feeling so much better, and it was brilliant to just feel "normal". A fair amount of breast leaking I notice, and also the breast is starting to feel quite hard on the underneath. The skin is soft all over and not painful and there is no redness. The scar area looks like a dusky, healthy lilac colour. The nipple has somewhat collapsed in on itself, but I'm not bothered really. I like this breast but I've come to accept the inevitable ...something isn't right and I can't imagine that it will ever be. People tell me not to be negative, but I'm just being realistic! The breast fills up with serum, and then it releases it through the scar tissue and I feel better, until it builds up again.
So I'm just enjoying the last few hours of being at home and feeling fairly normal before the inevitable trip back to hospital. I see the surgeon anyway on Thursday - the question is, what will happen before Thursday?
Saturday, August 22, 2015
Bloody Ripoff Hospedia
I bought a £10 card with the intention of buying 2 x £5 bundles, to last me through two days on the ward at University Coventry & Warwickshire. I uploaded the £10 card and after the free morning TV had ended, I activated the first bundle which entitles you to 25 TV channels for 6 hours. I went to sleep at midnight and the next morning I noticed that my account was empty, when it should have contained £5 credit.
The cheery Scot on the helpline confirmed that my account was empty and told me that I had activated the second £5 bundle minutes after the first had expired, at half-past midnight. So now, he said, yes, the account was empty. I explained that this was nonsense because I'd been asleep when he claimed I chose and confirmed the second bundle....in any case, HAD I activated it, I would now have been able to see it 'counting down', and there was nothing counting down and no additional channels available.
He couldn't care less - he simply repeated that he could see exactly what I had done, and that was activating and confirming the second package at 12.30. Nothing I could say would make any difference.
The entire system is a ripoff, starting with the outrageous cost of incoming calls, which charge the caller 49p per minute while drawling through the obvious information that this person is in hospital - OFCOM says that this has never been a directive - before the caller can even ring the bedside telephone, which if not answered, still charges the caller.
Subscriptions to Netflix cost £5.99 a month. If you use it, this system costs £7.50 a day (and people buying cards of £10 can't get a refund), gives you less, and calls you a liar when you try and sort out problems.
The cheery Scot on the helpline confirmed that my account was empty and told me that I had activated the second £5 bundle minutes after the first had expired, at half-past midnight. So now, he said, yes, the account was empty. I explained that this was nonsense because I'd been asleep when he claimed I chose and confirmed the second bundle....in any case, HAD I activated it, I would now have been able to see it 'counting down', and there was nothing counting down and no additional channels available.
He couldn't care less - he simply repeated that he could see exactly what I had done, and that was activating and confirming the second package at 12.30. Nothing I could say would make any difference.
The entire system is a ripoff, starting with the outrageous cost of incoming calls, which charge the caller 49p per minute while drawling through the obvious information that this person is in hospital - OFCOM says that this has never been a directive - before the caller can even ring the bedside telephone, which if not answered, still charges the caller.
Subscriptions to Netflix cost £5.99 a month. If you use it, this system costs £7.50 a day (and people buying cards of £10 can't get a refund), gives you less, and calls you a liar when you try and sort out problems.
Thursday, August 20, 2015
That was the week that wasn't - back in Ward 32
I've put off writing this blog and yet I shouldn't have. I just felt way too sick to begin it.
Back in Ward 32 - Part I
I awoke on the morning of Wednesday 12th August - the 'Glorious Twelfth' - being pursued by a problem. I felt nauseous immediately on awakening. And the nausea reminded me of a previous encounter with cellulitis. Not realising how seriously ill I was, I had tried to put off the situation as long as possible and then we needed to call a paramedic.
This time I wasn't going to wait. I saw inflammation near the scar and knew that it was time to go to hospital. Fortunately we were seen fairly quickly and ushered at least into a bed, because my head was beginning to loll and I felt giddy. My blood count showed an infection, and a Moldavan plastic surgeon called Sergei told me that I would be admitted for IV antibiotics.
Back to Ward 32. Back to the same bed space I occupied before.
It is now a week since that night and when I think back, I don't remember anything much for the first three days. I was given two types of antibiotic intravenously - one was flucloxicillin and the other was penicillin, Though I felt conscious enough, I was slipping in and out of consciousness for much of it. I didn't speak to my ward mates because of the energy it consumed. Keith visited as usual every night and I spoke to him on those occasions but I can't remember what it was really like. In the mornings it was always worse...nausea and swollen breast.
I do remember just weeping. The tears, flowing out of my eyes in torrents, feeling depressed and hopeless, but I can't remember the exact cause. I think on the first night I'd had no sleep at all because of discomfort and pain; further punctuated by the obs rounds and the IV infusions, and then the sun came streaming in straight into the ward along with a loud chorus of nurses and healthcare assistants. Some staff nurses are gentle and let us sleep in the morning, but others believe in being sadistic. On this morning we had a sadistic team who walked in and flung our curtains back. It was the last think I needed and I got up and wandered down the corridor to the end if the ward, and there I sat noiselessly weeping for some time.
That night when my dear OH visited, I had a thumping headache and aching breast. I could not talk so lay in bed while he stroked my head.
My other real memory was that the original cannula inserted by Sergei on the 12th, needed to be removed - which was a pity as it was a good one. In the blackness of night I was visited by a dashing, tall gay nurse called Barry and he proceeded to try an fit me with a new one. He tried three times and each attempt was agony, and each time he failed. To his mortification he had to go and find someone more experienced, and an hour later a short gay sister came to my bedside. She declared that the only place to spear me was under my left thumb at the bend of the wrist, which was excruciating to have inserted....but to be fair, the 6am infusion went well. It was not until my parents arrived to visit that the cannula gave up after the first bolus and the second was impossible to insert without serious agony. At first the nurse tried squeezing the syringe for a millimetre, and then resting, but even the resting was agonising. I was crying and calling out, "No! No! NO!" But she simply said that there was no reason for it to hurt so badly, as if I was making my pain up. My poor parents could only watch and stroke me while she pressed on, until finally she agreed to make up the rest of the drug in a drip bag. This seemed to work.
However that night it became apparent to the gorgeous night nurse immediately that this cannula was no good, and she managed to find a mysterious Night Sister who actually located another vein to cannulate. By now I had completely run out of veins on my upper body and was desperate for this one to work. Huge bruises had appeared on the other sites attacked by Barry the Bruiser, which still persist at the time of writing.
Back in Ward 32 - Part I
I awoke on the morning of Wednesday 12th August - the 'Glorious Twelfth' - being pursued by a problem. I felt nauseous immediately on awakening. And the nausea reminded me of a previous encounter with cellulitis. Not realising how seriously ill I was, I had tried to put off the situation as long as possible and then we needed to call a paramedic.
This time I wasn't going to wait. I saw inflammation near the scar and knew that it was time to go to hospital. Fortunately we were seen fairly quickly and ushered at least into a bed, because my head was beginning to loll and I felt giddy. My blood count showed an infection, and a Moldavan plastic surgeon called Sergei told me that I would be admitted for IV antibiotics.
Back to Ward 32. Back to the same bed space I occupied before.
It is now a week since that night and when I think back, I don't remember anything much for the first three days. I was given two types of antibiotic intravenously - one was flucloxicillin and the other was penicillin, Though I felt conscious enough, I was slipping in and out of consciousness for much of it. I didn't speak to my ward mates because of the energy it consumed. Keith visited as usual every night and I spoke to him on those occasions but I can't remember what it was really like. In the mornings it was always worse...nausea and swollen breast.
I do remember just weeping. The tears, flowing out of my eyes in torrents, feeling depressed and hopeless, but I can't remember the exact cause. I think on the first night I'd had no sleep at all because of discomfort and pain; further punctuated by the obs rounds and the IV infusions, and then the sun came streaming in straight into the ward along with a loud chorus of nurses and healthcare assistants. Some staff nurses are gentle and let us sleep in the morning, but others believe in being sadistic. On this morning we had a sadistic team who walked in and flung our curtains back. It was the last think I needed and I got up and wandered down the corridor to the end if the ward, and there I sat noiselessly weeping for some time.
That night when my dear OH visited, I had a thumping headache and aching breast. I could not talk so lay in bed while he stroked my head.
My other real memory was that the original cannula inserted by Sergei on the 12th, needed to be removed - which was a pity as it was a good one. In the blackness of night I was visited by a dashing, tall gay nurse called Barry and he proceeded to try an fit me with a new one. He tried three times and each attempt was agony, and each time he failed. To his mortification he had to go and find someone more experienced, and an hour later a short gay sister came to my bedside. She declared that the only place to spear me was under my left thumb at the bend of the wrist, which was excruciating to have inserted....but to be fair, the 6am infusion went well. It was not until my parents arrived to visit that the cannula gave up after the first bolus and the second was impossible to insert without serious agony. At first the nurse tried squeezing the syringe for a millimetre, and then resting, but even the resting was agonising. I was crying and calling out, "No! No! NO!" But she simply said that there was no reason for it to hurt so badly, as if I was making my pain up. My poor parents could only watch and stroke me while she pressed on, until finally she agreed to make up the rest of the drug in a drip bag. This seemed to work.
However that night it became apparent to the gorgeous night nurse immediately that this cannula was no good, and she managed to find a mysterious Night Sister who actually located another vein to cannulate. By now I had completely run out of veins on my upper body and was desperate for this one to work. Huge bruises had appeared on the other sites attacked by Barry the Bruiser, which still persist at the time of writing.
Friday, August 7, 2015
The brain awakens
Today I was achey on the left side, and even resorted to taking a couple of painkillers. It may be the soft bra top I was wearing, which was padded. My new nipple had flattened.
But at least my brain started working again. I started looking at interesting ideas to create an online marketplace for my OH's printing business - although the business is busy this week - I've been berating him for not trying to expand into the personal market, and he snapped back that someone else should do the work. I was more than happy about this because I've always wanted to explore this as a venture but he used to want to keep control if it.
But oh, I procrastinate. It's hard enough to settle because we've got a builder in, making me a studio in the garden, and he's got his radio blasting throughout the dat, and he drifts in and out to make coffee and use the cloakroom. He's a nice enough bloke but I still feel unsettled. I did some dusting and some cooking but could not relax.
I was worried about my father who was having an invasive MRI scan in Bristol, and not having heard from him until early evening, I found it hard to concentrate. Finally he called me on a crackly line to say that they'd only just started back and that the procedure had been arduous but that he felt okay. I was so relieved that I wept and suddenly discovered my appetite again. But I know he will be very very weary from the whole experience throughout the weekend.
I finally found the ability to get down to business when I heard the radio switched off and the blue van reversing up the drive. I started searching on the web in earnest. I found some fascinating products already in the marketplace in America, and made notes on how they could be replicated for the UK market. And these thoughts led to other ideas, which I need to harness and make into a map. I find that I will think of something with merit, only to completely forget it moments later. It's crucial to write it down while it's fresh. Even if I feel as though I couldn't possibly forget it, I do. Also I researched some domain names and there were done considerable surprises available.
Only problem is, that now I have switched the brain on, it's feeling rather difficult to switch off.....
But at least my brain started working again. I started looking at interesting ideas to create an online marketplace for my OH's printing business - although the business is busy this week - I've been berating him for not trying to expand into the personal market, and he snapped back that someone else should do the work. I was more than happy about this because I've always wanted to explore this as a venture but he used to want to keep control if it.
But oh, I procrastinate. It's hard enough to settle because we've got a builder in, making me a studio in the garden, and he's got his radio blasting throughout the dat, and he drifts in and out to make coffee and use the cloakroom. He's a nice enough bloke but I still feel unsettled. I did some dusting and some cooking but could not relax.
I was worried about my father who was having an invasive MRI scan in Bristol, and not having heard from him until early evening, I found it hard to concentrate. Finally he called me on a crackly line to say that they'd only just started back and that the procedure had been arduous but that he felt okay. I was so relieved that I wept and suddenly discovered my appetite again. But I know he will be very very weary from the whole experience throughout the weekend.
I finally found the ability to get down to business when I heard the radio switched off and the blue van reversing up the drive. I started searching on the web in earnest. I found some fascinating products already in the marketplace in America, and made notes on how they could be replicated for the UK market. And these thoughts led to other ideas, which I need to harness and make into a map. I find that I will think of something with merit, only to completely forget it moments later. It's crucial to write it down while it's fresh. Even if I feel as though I couldn't possibly forget it, I do. Also I researched some domain names and there were done considerable surprises available.
Only problem is, that now I have switched the brain on, it's feeling rather difficult to switch off.....
Wednesday, August 5, 2015
The Arden Centre
I had a surprisingly sleepy night. Which surprised me more than anyone.
The Arden Centre is the cancer department of the Coventry and Warwickshire Hospital, where I am being treated. From the outside it looks modern and streamlined, and quiet, like a gravestone on the edge of the hospital.
Inside, I was surprised. The revolving doors lead into a light and open area furnished with soft and comfortable chairs in turquoise and purple chairs. Above, there's gentle purple mood lighting, and under, there's a plentiful open refreshments shop, and plenty of books to read.
The people look normal: most of them are a little older than me, but they all look human and ordinary. This is not what I was expecting: I thought everyone would look like yellowed cadavers which hollowed eyes. People were chatting in groups, although in hushed tones. There is a large screen which puts up names matched with the booths which I suspect are the chemo chairs.
I am called by a nurse and all I need to do right now is give my weight and height and blood pressure reading. My blood pressure is very high at 170/93 (which for me is better than normal) but the nurse assures me that everyone is high because no one wants to be there. She warns me that I will probably not see The Professor, but I will see his second in command and it's almost as good. She also says that a) there will be a long wait and b) I will feel better before I leave.
In fact, I don't have to wait so long, and to my surprise I'm soon called through by The Professor himself. He asks me why I think I'm there, and I tell him, and he agrees.
It turns out that they aren't going to tell me today whether I need chemo. I still have to wait for two weeks while they send off my tissue to America. But what I do hear is the reason hat if it does come back telling me that chemo is a good idea, then it will be a good idea. It is called the Oncotype DX procedure. It will take the soul-searching away. Also he tells me that if I need the chemo, it WILL be the kind that makes my hair fall out, and they can do a lot about the sickness. But it will only last for four and a half months.
So it was a good thing, today, although I didn't get the answer I wanted.
Bizarrely then when I was having pre-chemo follow-up tests, I was standing in the main hospital entrance and my ex sister-in-law walked in, along with her son and her father, who used to be my father-in-law. The son looked instantly pleased to see me, and smiled. The sister-in-law just looked and walked straight past, and so did the father. I couldn't believe the ignorance level. For all they know, I was there to visit a member of their family, but because of their ignorance, they didn't even bother to come over and enquire.
I had a blood test, which for me was like the very walk through the valley of death. After a long weight my number was called and I had to walk through opened cubicles with people sitting down having their arms pumped for blood, and hearing the nurses shout things like, "Now that's a nice juicy vein!" "Look at all the blood you're producing" and so on. I was allowed to lie down and be pampered. Then I had an ECG.
But in all, a productive day although it didn't start off seeming so.
The Arden Centre is the cancer department of the Coventry and Warwickshire Hospital, where I am being treated. From the outside it looks modern and streamlined, and quiet, like a gravestone on the edge of the hospital.
Inside, I was surprised. The revolving doors lead into a light and open area furnished with soft and comfortable chairs in turquoise and purple chairs. Above, there's gentle purple mood lighting, and under, there's a plentiful open refreshments shop, and plenty of books to read.
The people look normal: most of them are a little older than me, but they all look human and ordinary. This is not what I was expecting: I thought everyone would look like yellowed cadavers which hollowed eyes. People were chatting in groups, although in hushed tones. There is a large screen which puts up names matched with the booths which I suspect are the chemo chairs.
I am called by a nurse and all I need to do right now is give my weight and height and blood pressure reading. My blood pressure is very high at 170/93 (which for me is better than normal) but the nurse assures me that everyone is high because no one wants to be there. She warns me that I will probably not see The Professor, but I will see his second in command and it's almost as good. She also says that a) there will be a long wait and b) I will feel better before I leave.
In fact, I don't have to wait so long, and to my surprise I'm soon called through by The Professor himself. He asks me why I think I'm there, and I tell him, and he agrees.
It turns out that they aren't going to tell me today whether I need chemo. I still have to wait for two weeks while they send off my tissue to America. But what I do hear is the reason hat if it does come back telling me that chemo is a good idea, then it will be a good idea. It is called the Oncotype DX procedure. It will take the soul-searching away. Also he tells me that if I need the chemo, it WILL be the kind that makes my hair fall out, and they can do a lot about the sickness. But it will only last for four and a half months.
So it was a good thing, today, although I didn't get the answer I wanted.
Bizarrely then when I was having pre-chemo follow-up tests, I was standing in the main hospital entrance and my ex sister-in-law walked in, along with her son and her father, who used to be my father-in-law. The son looked instantly pleased to see me, and smiled. The sister-in-law just looked and walked straight past, and so did the father. I couldn't believe the ignorance level. For all they know, I was there to visit a member of their family, but because of their ignorance, they didn't even bother to come over and enquire.
I had a blood test, which for me was like the very walk through the valley of death. After a long weight my number was called and I had to walk through opened cubicles with people sitting down having their arms pumped for blood, and hearing the nurses shout things like, "Now that's a nice juicy vein!" "Look at all the blood you're producing" and so on. I was allowed to lie down and be pampered. Then I had an ECG.
But in all, a productive day although it didn't start off seeming so.
Subscribe to:
Comments (Atom)