I was still awake at 7 this morning - steroid insomnia, though it’s never been that bad. After a cup of tea, I’m ashamed to admit I took 2 diazepam and got in 3 hours sleep.
My ribs were seriously painful (same as last week, definitely how Paclitaxel affects muscle and joint pain so nothing to worry about). My GP practice declined the request to complete a bloods request card on the grounds that they ‘aren’t trained to that level’ - all it required was copying the details from the computer from last week! So I didn’t see much point in asking if they could duplicate the A&E prescription for anti-inflammatories. I rang Oncology and Rachel was so helpful, after she’d checked every possible symptom and more to rule out other issues. She suggested she ring my GP practice to explain the situation and ask them to issue a prescription. The alternative was to go back to Ward J95, my place of residence when I had neutropoenic sepsis. I really thought that was a waste of their resources as they would have to assess me from scratch, including more xrays, so I was grateful for her offer to ring the practice. She rang back, said she’d explained it all and a doctor would ring me this afternoon. Did they buggery. I carried two phones with me everywhere so I know I didn’t miss a call. I gave up at 6.30 when starvation drove me to my Tantrum Stew,
This is the third time I have felt let down by this practice but there’s no alternative. I was in serious ‘agony’ with every arm movement firing up the pain, not to mention trying to shift myself into lying, sitting or standing up. Moving round is fine. I resorted to Nurofen. I wonder if this unnamed doctor was the one who made me so angry when I saw her before chemo.
What I just don't get is how two organisations, both part of the same Trust, will not work together. As far as my GP practice is concerned, the hospital is treating me and they won’t get involved. It’s ridiculous.
On the good side, I made my Tantrum Stew with a little help from Dennis as I can’t lift heavy pans and don’t trust my hand with a sharp knife (watching D, I can’t trust him either!). I did snap at him a couple of times as he questioned everything I was doing and added “I could do that.” Aargh. Funnily, Sue had mentioned the mood swings as a serious side effect for her mother and I blithely said I didn’t get them. Not sure Dennis would agree!
I also rang Cookridge Hall (now Bannatyne’s) and have reactivated my membership from 1 May, book group day. Even if I just sit and move my legs on the bike for 2-3 minutes, it will be a start but it will hav to be one-armed tai chi and I can’t see me being able to stand for long. Anyway I had a lovely (?) chat with Sue on Reception - she’s always friendly and always asks how I am but I understand more now, as she lost her mother to breast cancer - it came out when I was was saying the treatment is way worse than the disease. Then I spoke to Jez, the manager (?) who helped me on accident day and he’s arranging vouchers as gifts to the two whose cars were so badly damaged. So I was able to text them to apologise at last and ask them each to accept a lunch for two as a tiny gesture of apology. I got lovely replies - the owner of the black car, which I went directly into, received her new car last Thursday and loves it! I can’t apologise yet to the owner of the third car as I had no recall and sort of disputed how much damage there could have been. However, I’ve checked with Maureen who described where it was and what the damage was (‘slight’ but is that slight relative to the other cars, two of which were write-offs?). Anyway, until I hear from the insurance company I can’t contact her to apologise but I don’t think a small paint job warrants a gift. Am I being tight? More than anything, I think it’s just that I can’t relate to the car in the accident so she kind of doesn't feel real to me.
So no anti-inflammatories, no scheduled 3pm oncology call...and the steroid boost has gone. What lies ahead?
Wednesday, 17 April 2019
Tuesday, 16 April 2019
74. No point making plans
It’s such a good job Dennis isn’t in my place. He has a touch of the Sheldon about him and he’d be heading towards meltdown with all the changes afoot.
Chemo today - it still took 3 hours but we hit the school run crowd and missed the rush hour home. I do find Maureen’s presence very reassuring (I’m not just saying that cos I know you’re reading it ;) ). Maybe it’s because she’s been through it all and there is absolutely nothing of Cancer Patient about her. Today for some reason, I didn't feel as confident and felt close to an anxiety attack but, with Maureen and the Lorazepam, it didn’t happen.
ONLY TWO MORE TO GO.
I arranged with Lisa for her to take me to my therapy tomorrow but Judy has had to cancel for personal reasons. Dennis is annoyed (Sheldon?) but it really is unavoidable. I might suggest we go for a cuppa at Refresca. Who ‘we’ is, I don’t know lol. Just know they must have a car! Anyway, my first therapy is cancelled, my prosthesis measuring is cancelled and all I have scheduled is a phone check at 3. Someone from oncology rang yesterday to check (I think they were alarmed at their understanding of my side effects, when all I wanted to know was should I apply heat or cold to my ribs lol) so maybe that won’t happen. I have got a few questions so I hope Susan does ring.
The insurers have written the car off. In 9 months of ownership, with just over 800 on the clock, I’ve calculated the car cost me about £9 a mile!! I’ve set Hepworth on another search for as close as they can get to what I’ve lost.
To be honest, I’m relieved. The prospect of driving a car with such a high level of repairs is somewhat alarming. I also learnt that the airbag didn’t deploy because touching the brake activates the process. It kind of makes sense (the engineer was confident from the evidence that my foot was on the accelerator as I suspected) but doesn’t give me much faith in airbags when I can think of several scenarios where the driver wouldn’t put her/his foot on the brake (like being struck from behind - no time, no warning).
Lost the train of thought now so I’ll bore you more tomorrow!
Chemo today - it still took 3 hours but we hit the school run crowd and missed the rush hour home. I do find Maureen’s presence very reassuring (I’m not just saying that cos I know you’re reading it ;) ). Maybe it’s because she’s been through it all and there is absolutely nothing of Cancer Patient about her. Today for some reason, I didn't feel as confident and felt close to an anxiety attack but, with Maureen and the Lorazepam, it didn’t happen.
ONLY TWO MORE TO GO.
I arranged with Lisa for her to take me to my therapy tomorrow but Judy has had to cancel for personal reasons. Dennis is annoyed (Sheldon?) but it really is unavoidable. I might suggest we go for a cuppa at Refresca. Who ‘we’ is, I don’t know lol. Just know they must have a car! Anyway, my first therapy is cancelled, my prosthesis measuring is cancelled and all I have scheduled is a phone check at 3. Someone from oncology rang yesterday to check (I think they were alarmed at their understanding of my side effects, when all I wanted to know was should I apply heat or cold to my ribs lol) so maybe that won’t happen. I have got a few questions so I hope Susan does ring.
The insurers have written the car off. In 9 months of ownership, with just over 800 on the clock, I’ve calculated the car cost me about £9 a mile!! I’ve set Hepworth on another search for as close as they can get to what I’ve lost.
To be honest, I’m relieved. The prospect of driving a car with such a high level of repairs is somewhat alarming. I also learnt that the airbag didn’t deploy because touching the brake activates the process. It kind of makes sense (the engineer was confident from the evidence that my foot was on the accelerator as I suspected) but doesn’t give me much faith in airbags when I can think of several scenarios where the driver wouldn’t put her/his foot on the brake (like being struck from behind - no time, no warning).
Lost the train of thought now so I’ll bore you more tomorrow!
Thursday, 11 April 2019
73. Reconciled
Today I woke with a yelp and a suppressed scream. I’d forgotten for a moment that I have an injured chest - not a lol moment. However, the Naproxen is now doing its anti-inflammatory job (I’m not taking the additional recommended paracetamol unless I get desperate) and I’ve learn that I need to sit upright or be moving around if I want to avoid pain. As the Naproxen needs to be taken with food, I’m eating way more than usual, which can only be good.
Several calls about the car but basically they can’t do any more till they get the car key. Why did the police leave it with me? Why, for that matter, did I take it out of the ignition - as if anyone could have nicked it! However, I’ve reconciled myself to what happened, rationalised as much as I can and in the end it boils down to the fact that accidents happen. Part of me would like to see the cctv to understand but another part wonders what that would achieve. It happened. I drove badly. My pride is damaged. I’m positive it had nothing to do with poor judgment linked to chemotherapy, just poor judgment and the wrong instinctive reaction - scary but apparently not that rare for people who have changed over to automatic cars.
So now it’s wait and see if it can be repaired after all or should be written off at such a youthful age. I can manage without in the meantime. I’ve made an appointment to see Judy next Wednesday - I may ask someone to drive me there, I may get a cab. Good job I’m rolling in money eh! I certainly wouldn’t drive, given the state of my sternum. I wouldn’t consider myself safe. See? I do have some sense. Dennis is very concerned about my driving now, but I think that’s more his reaction to my being in a crash.
So I am stuffed to the gills, having already had three meals today (including tantrum stew), with another big snack at least on the cards. I have the Paclitaxel numb fingertips and the foamy mouth has started. If the schedule is as usual, tomorrow I will feel like shit but today has been good, with a lovely planter from Joyce and plenty of reading out in the sun, wrapped to the ears against the breeze. Despite all that’s happened, I feel (almost) good. I can see so many good things, like my absence of shock, my handling A&E without anxiety - these little miracles are lifting my spirits and there’s only 3 chemos to go.
Quite how I’ll manage the tattoo process with a sore chest, I don’t know. That may have to be deferred but - I find this almost unbelievable - both adjuvant oncology nurses are on leave till next week. Fancy leaving patients with no one to turn to except the poor oncology nurses who barely know if they are coming or going!!
Several calls about the car but basically they can’t do any more till they get the car key. Why did the police leave it with me? Why, for that matter, did I take it out of the ignition - as if anyone could have nicked it! However, I’ve reconciled myself to what happened, rationalised as much as I can and in the end it boils down to the fact that accidents happen. Part of me would like to see the cctv to understand but another part wonders what that would achieve. It happened. I drove badly. My pride is damaged. I’m positive it had nothing to do with poor judgment linked to chemotherapy, just poor judgment and the wrong instinctive reaction - scary but apparently not that rare for people who have changed over to automatic cars.
So now it’s wait and see if it can be repaired after all or should be written off at such a youthful age. I can manage without in the meantime. I’ve made an appointment to see Judy next Wednesday - I may ask someone to drive me there, I may get a cab. Good job I’m rolling in money eh! I certainly wouldn’t drive, given the state of my sternum. I wouldn’t consider myself safe. See? I do have some sense. Dennis is very concerned about my driving now, but I think that’s more his reaction to my being in a crash.
So I am stuffed to the gills, having already had three meals today (including tantrum stew), with another big snack at least on the cards. I have the Paclitaxel numb fingertips and the foamy mouth has started. If the schedule is as usual, tomorrow I will feel like shit but today has been good, with a lovely planter from Joyce and plenty of reading out in the sun, wrapped to the ears against the breeze. Despite all that’s happened, I feel (almost) good. I can see so many good things, like my absence of shock, my handling A&E without anxiety - these little miracles are lifting my spirits and there’s only 3 chemos to go.
Quite how I’ll manage the tattoo process with a sore chest, I don’t know. That may have to be deferred but - I find this almost unbelievable - both adjuvant oncology nurses are on leave till next week. Fancy leaving patients with no one to turn to except the poor oncology nurses who barely know if they are coming or going!!
Wednesday, 10 April 2019
72. Mortified...
OK, confession time. This one-week break (which remember I didn’t want cos it dragged things out longer) had its advantages. Some of the horrid physical symptoms were going or gone and I could be more active. Friday I was out in the car and mastered the St James’s multi-storey. Saturday, I went to the dentist. Although I baulked at having full treatment without sedation (obviously I’m not that improved), I had temporary dental treatment for a lost bit of filling or tooth caused by gentle flossing! Monday, I drove to Wharfedale Hospital for my blood tests, dropped Den off and drove on to meet the tai chi group at Cookridge Hall. Almost a normal life, though not quite up to exercise yet.
I left just before 2pm. At 2pm, I was rammed against the rear ends of two parked cars thinking ‘thank god there’s no people around’ and ‘I need to get out of here,’ in that order. I’d completed a simple manoeuvre in the car that I’ve done for the past 20 years. I turned down the ramp and... well, I don’t really know. Maybe I knocked the kerb as I did the sweep round? All I knew was I wasn’t orientated down the ramp and was in danger of driving into the side of a parked car. I wish I had because it got worse. I swept the wheel to the left and did an emergency stop. Only I didn’t. Next thing I knew, the car was hurtling across the driveway at full pelt and rammed into the back of two parked cars.
Looking back, all I can think is that my mind switched into manual drive mode (I got the automatic at the end of August but the cancer and chemo have given me little opportunity to get used to automatic driving. I have it cracked, no longer move my left leg - but is it embedded in my instincts? NO). I must have had my foot pressing right down on the accelerator, not the brake! It felt like a scene out of Back To The Future.
Strange how you can’t recall precise details when the adrenaline is flowing. People rushed over and helped me out of the car, which was making nasty hissing sounds. I could see the front had buckled like a concertina, the black car’s rear was pretty badly damaged and the white car’s rear was damaged on at least the driver’s side. I sat on the floor, stunned. Not physically stunned but ‘how the hell did I do that?’ stunned. I just couldn’t make sense of it. People were lovely. They took me back into Cookridge Hall (I remember one man wasn’t at all happy they were making me walk and believed I should be left till my injuries were identified - as far as I was concerned, the only injury was to my pride), they sat with me, called an ambulance to check me out and obviously called the police. Maureen went off to fetch Dennis.
A few police questions (they didn’t breathalyse me or even ask if I’d had a drink). I think the chemo hair led them to assume it might be a medical matter as I’ve been told they’ve had to report it as a potential medical issue to the DVLA, which will require a medical, and I might have my licence withheld. I am absolutely certain it wasn’t that - I wasn’t even in shock, just totally perplexed that it happened. Then off to the ambulance to be checked over. Everything seemed to be fine but they decided, given the fact I’m going through chemotherapy, I ought to go to A&E for a more thorough check. The A&E at the LGI is not very pleasant and we were there 5 hours at a non-busy time. Although I mentioned the chemotherapy, they didn’t attempt to find me somewhere more isolated - Dennis and I did that ourselves. The eventual x-rays showed no damage, I was offered codeine (no thanks) and sent home. What was so wonderful was the realisation that I’d gone through it all without a single anxious thought about no transport, being stuck, what if I had a panic attack etc. Those are miracles in my book.
I spent the evening informing various people, like the insurance firm, then the underwriter etc, what had happened. With no other drivers, there was no question of my culpability!
Tuesday I had chemo and I’d already decided that Dennis and I would try a taxi - I would after all have lorazepam to take off the edge. Disappointingly we were there well over 3 hours, but it’s an improvement on the 5 hour sessions. Then my 3rd taxi journey home. Within 2 hours, my internal bruising was almost unbearable. I felt I was on fire. The kind of pain where you can’t avoid yelling when you move! I knew it was the Paclitaxel - it causes joint pain but I noticed from the start that it caused tender muscles, particularly under my treated arm. So I didn’t think about it beyond cursing that paracetamol didn’t help one bit and I really didn’t want to take ibuprofen as the last thing I needed was constipation!
Today, I rang St James’s, ostensibly to request the bloods form I need for next Monday, but mentioned the pain. Damn. They insisted I go back to A&E for further checks in case of the risk of blot clots. Pretty good reason I guess. Back in a cab (doing well with cabs!) and what a different experience - relatively speedy and, given the chemotherapy, separate rooms away from the crowds. The doctor eventually examined me, went off to look at my X-rays and concluded that the cartilage between the sternum and my ribs is badly bruised and the inner edge of my mastectomy scar. My back pain is part of the injury as the trauma would have gone all round.
So two big questions.1. Wtf did I do wrong? My last accident was 1975 when I was relatively inexperienced. 2. Why didn’t the airbag deploy? According to Maureen who had just left me and turned round at the noise of a roaring engine, the car was doing quite a speed.
But more than anything, how could I do anything so bloody stupid? Thank god it was a private car park and not a road. Thank god there were no pedestrians nearby and only I was injured. But what a time to get injured. The steroid boost was back today but it’s gone now. The next few days, given this pain, will be hell regardless of the Paclitaxel. I just need a break!!
I left just before 2pm. At 2pm, I was rammed against the rear ends of two parked cars thinking ‘thank god there’s no people around’ and ‘I need to get out of here,’ in that order. I’d completed a simple manoeuvre in the car that I’ve done for the past 20 years. I turned down the ramp and... well, I don’t really know. Maybe I knocked the kerb as I did the sweep round? All I knew was I wasn’t orientated down the ramp and was in danger of driving into the side of a parked car. I wish I had because it got worse. I swept the wheel to the left and did an emergency stop. Only I didn’t. Next thing I knew, the car was hurtling across the driveway at full pelt and rammed into the back of two parked cars.
Looking back, all I can think is that my mind switched into manual drive mode (I got the automatic at the end of August but the cancer and chemo have given me little opportunity to get used to automatic driving. I have it cracked, no longer move my left leg - but is it embedded in my instincts? NO). I must have had my foot pressing right down on the accelerator, not the brake! It felt like a scene out of Back To The Future.
Strange how you can’t recall precise details when the adrenaline is flowing. People rushed over and helped me out of the car, which was making nasty hissing sounds. I could see the front had buckled like a concertina, the black car’s rear was pretty badly damaged and the white car’s rear was damaged on at least the driver’s side. I sat on the floor, stunned. Not physically stunned but ‘how the hell did I do that?’ stunned. I just couldn’t make sense of it. People were lovely. They took me back into Cookridge Hall (I remember one man wasn’t at all happy they were making me walk and believed I should be left till my injuries were identified - as far as I was concerned, the only injury was to my pride), they sat with me, called an ambulance to check me out and obviously called the police. Maureen went off to fetch Dennis.
A few police questions (they didn’t breathalyse me or even ask if I’d had a drink). I think the chemo hair led them to assume it might be a medical matter as I’ve been told they’ve had to report it as a potential medical issue to the DVLA, which will require a medical, and I might have my licence withheld. I am absolutely certain it wasn’t that - I wasn’t even in shock, just totally perplexed that it happened. Then off to the ambulance to be checked over. Everything seemed to be fine but they decided, given the fact I’m going through chemotherapy, I ought to go to A&E for a more thorough check. The A&E at the LGI is not very pleasant and we were there 5 hours at a non-busy time. Although I mentioned the chemotherapy, they didn’t attempt to find me somewhere more isolated - Dennis and I did that ourselves. The eventual x-rays showed no damage, I was offered codeine (no thanks) and sent home. What was so wonderful was the realisation that I’d gone through it all without a single anxious thought about no transport, being stuck, what if I had a panic attack etc. Those are miracles in my book.
I spent the evening informing various people, like the insurance firm, then the underwriter etc, what had happened. With no other drivers, there was no question of my culpability!
Tuesday I had chemo and I’d already decided that Dennis and I would try a taxi - I would after all have lorazepam to take off the edge. Disappointingly we were there well over 3 hours, but it’s an improvement on the 5 hour sessions. Then my 3rd taxi journey home. Within 2 hours, my internal bruising was almost unbearable. I felt I was on fire. The kind of pain where you can’t avoid yelling when you move! I knew it was the Paclitaxel - it causes joint pain but I noticed from the start that it caused tender muscles, particularly under my treated arm. So I didn’t think about it beyond cursing that paracetamol didn’t help one bit and I really didn’t want to take ibuprofen as the last thing I needed was constipation!
Today, I rang St James’s, ostensibly to request the bloods form I need for next Monday, but mentioned the pain. Damn. They insisted I go back to A&E for further checks in case of the risk of blot clots. Pretty good reason I guess. Back in a cab (doing well with cabs!) and what a different experience - relatively speedy and, given the chemotherapy, separate rooms away from the crowds. The doctor eventually examined me, went off to look at my X-rays and concluded that the cartilage between the sternum and my ribs is badly bruised and the inner edge of my mastectomy scar. My back pain is part of the injury as the trauma would have gone all round.
So two big questions.1. Wtf did I do wrong? My last accident was 1975 when I was relatively inexperienced. 2. Why didn’t the airbag deploy? According to Maureen who had just left me and turned round at the noise of a roaring engine, the car was doing quite a speed.
But more than anything, how could I do anything so bloody stupid? Thank god it was a private car park and not a road. Thank god there were no pedestrians nearby and only I was injured. But what a time to get injured. The steroid boost was back today but it’s gone now. The next few days, given this pain, will be hell regardless of the Paclitaxel. I just need a break!!
Sunday, 7 April 2019
71. Dilemmas
1. I can taste chocolate. This is a major cause for celebration and will last till Tuesday when I resume the Paclitaxel. My dilemma is this: do I wait till Easter as planned, then just stare wistfully, maybe have the occasional sniff of my giant Cadbury’s egg and know that I’ll be able to enjoy it a month or two down the line
OR do I break a lifetime’s habit of disciplining myself to wait, open that egg now and enjoy it while I can? I have a tiny superstitious reservation my mum instilled in me. Like her, I never ever open a present before the right day, regardless of the temptation. She had a reason - she’d given her dad a birthday present before his birthday and he died before his birthday. The fact that he had a terminal illness wasn’t relevant in Mum’s mind - she felt she’d pushed luck too far. So it’s all completely illogical. It’s only chocolate...
It’s ONLY chocolate?!?!? When is Cadbury’s ever “only chocolate?”
2. They’ve changed my appointments at the last minute. I can’t find a companion/chauffeur for Tuesday without resorting to the two people who have probably done the most for me - and I think they deserve a break. Since I’ll have Lorazepam to hand, I’m pretty sure I could manage on my own (with Dennis to prop me up) and use a taxi, which counts as public transport and has been avoided for decades. Another first for me. But I suspect both friends will be a bit miffed with me for not asking them. Hell, I’m 67 and worried about upsetting friends! Of all the people on my long list, this is a week when almost everyone is away or tied up somehow. It had to happen.
3. No longer a dilemma - I went to the dentist yesterday and had a temporary filler to avoid getting a gum infection. The dentist was lovely and very understanding as her father has cancer. Though my gums won’t ‘grow’ back to their healthy level, they will regain their healthy bulk once the chemo stops - which is a huge relief. Meantime, x-rays are clear, my teeth are fine (WHAT? My teeth are a disgrace to any mouth, like many a child of the 1950s) and I can stop worrying - till the next dilemma - do I have the Zolendrate treatment after chemo? Big dilemma given the potential but unlikely risk.
It’s ONLY chocolate?!?!? When is Cadbury’s ever “only chocolate?”
2. They’ve changed my appointments at the last minute. I can’t find a companion/chauffeur for Tuesday without resorting to the two people who have probably done the most for me - and I think they deserve a break. Since I’ll have Lorazepam to hand, I’m pretty sure I could manage on my own (with Dennis to prop me up) and use a taxi, which counts as public transport and has been avoided for decades. Another first for me. But I suspect both friends will be a bit miffed with me for not asking them. Hell, I’m 67 and worried about upsetting friends! Of all the people on my long list, this is a week when almost everyone is away or tied up somehow. It had to happen.
3. No longer a dilemma - I went to the dentist yesterday and had a temporary filler to avoid getting a gum infection. The dentist was lovely and very understanding as her father has cancer. Though my gums won’t ‘grow’ back to their healthy level, they will regain their healthy bulk once the chemo stops - which is a huge relief. Meantime, x-rays are clear, my teeth are fine (WHAT? My teeth are a disgrace to any mouth, like many a child of the 1950s) and I can stop worrying - till the next dilemma - do I have the Zolendrate treatment after chemo? Big dilemma given the potential but unlikely risk.
Friday, 5 April 2019
70. Let’s get those sleeves rolled up
One major issue resolved today. Dennis came with me to clinic again (very depressing) but this time I asked him to come in with me, partly because chemo-brain can be unreliable and partly because I am worn down by his frustration that I don’t know the answers to his questions. Well, now he knows even the oncologist doesn’t have the answers.
I’d already got off to a great start by having ‘lost’ my glasses, having removed them when driving round and round the car park. I knew they had to be on the car floor or just outside the car. But the prospect of going back to look for them was inconceivable as we’d had to park on level 3 - so I had a list of things on my phone and couldn’t barely read them.
Surprisingly, they think I’m having a tough time of it, whereas I assumed it was tough for everyone, and Dr U was very sympathetic and almost apologetic. But he knows his job and, offered the option of stopping at this point (only 4 sessions from the end), having another week’s break before resuming or just carrying on, I opted for the last. I think if I didn’t complete the chemotherapy, I’d always have at the back of my mind the fear that the cancer might return whereas, although I know it’s a possibility, it’s not something I’m likely to dwell on over the next 10 years of hormone treatment! My blood results weren’t great but good enough for me to handle chemo. My weight has increased this week and my ulcer, now I’ve gone back to the herbal mouthwash, is close to healing, as is my pressure sore. I do feel incredibly weak still but that’s the Paclitaxel, not my blood (if that makes sense?). I am also incredibly clumsy too!
I’d already got off to a great start by having ‘lost’ my glasses, having removed them when driving round and round the car park. I knew they had to be on the car floor or just outside the car. But the prospect of going back to look for them was inconceivable as we’d had to park on level 3 - so I had a list of things on my phone and couldn’t barely read them.
Surprisingly, they think I’m having a tough time of it, whereas I assumed it was tough for everyone, and Dr U was very sympathetic and almost apologetic. But he knows his job and, offered the option of stopping at this point (only 4 sessions from the end), having another week’s break before resuming or just carrying on, I opted for the last. I think if I didn’t complete the chemotherapy, I’d always have at the back of my mind the fear that the cancer might return whereas, although I know it’s a possibility, it’s not something I’m likely to dwell on over the next 10 years of hormone treatment! My blood results weren’t great but good enough for me to handle chemo. My weight has increased this week and my ulcer, now I’ve gone back to the herbal mouthwash, is close to healing, as is my pressure sore. I do feel incredibly weak still but that’s the Paclitaxel, not my blood (if that makes sense?). I am also incredibly clumsy too!
So now I face the prospect of the 4 more Paclitaxel treatments, with increasingly numb fingertips that may take months or years to recover from (nerve tissue takes longer to repair itself than other tissue it seems) AND I need an emergency dental appointment. Unfortunately Dr U didn’t know if receded gum tissue repairs itself to its former glory and, sadly, my gums were the only good thing about the state of my teeth. He did say he’d ask his sister who’s a dentist! I thought that was reassuringly human :) Meantime, I need a temporary plug before whatever has caused the gap in one of my teeth turns into infection - cos my blood results were not great and I’m not likely to fight off any infection easily.
Surprisingly though, Dr U was very non-commital about chemotherapy fullstop. He almost gave the impression they do it but they’re unsure if there is any real benefit. I admit to feeling a wee bit pissed off at that - but unwilling to take the risk!
To quote my husband: “Is there no end to all this?”
Monday, 1 April 2019
69. It’s getting to me...
Quick update. Boring and not recommended reading - just a bit of therapy for me so I’d suggest you don’t waste time reading my moans. Serious recommendation!
Shit weekend. I couldn’t get the strength to turn the button on the boiler to increase the water pressure (temporary solution till I can do without heating and we can get our plumber to investigate more fully) so I asked D to do it. It’s so simple: turn the big white key to your right then twist the button to your left till there’s a good surge of water and the pressure gauge goes up to 2. Then stop it. “Is that clockwise or anticlockwise?” “To your right.” “So it’s clockwise.” Actually it’s not so I grind my teeth and leave him to work it out. Two minutes later, he’s let in so much water, the pressure gauge has gone to max and shut itself off. Why didn’t he just turn it back as I said when it got to 2? I’ve never been able to fathom why he’s so unmanned by anything remotely ‘technical.’
So, no boiler, no heating. I google frantically, I ring Worcester Bosch rather than disturb Stuart on Mothering Sunday. Nothing they suggest works. I try bleeding the radiators but I don’t have much strength. I end up draining the radiator in the bedroom, flopped on the floor, but that doesn’t work. We have one heater for the whole house. Guess who kept that!
Meantime, I’m salivating so much I reckon I produce as much fluid as the radiator I bled. I spend most of the day spitting into cups. I can barely eat, my ulcer is so painful and I am LOW. I have a pressure sore on my coccyx cos I’ve lost all my padding so I can’t sit, flop or lie without pain. No change today, though I mustered the strength to get in the car and drive to Cookridge Hall, chiefly to see the tai chi crowd but also to get warm. Bramhope is gridlocked (the drainage work for the new estate in ‘our’ field started today and they are using temporary lights). But I escaped eventually, only to find the road to Cookridge closed because of an accident and traffic’s being diverted into Bramhope even though one of the exit roads is closed and the other is just queuing cars. Is it surprising I lost my temper with D? Actually yes. I’ve never had a really hysterical rant in my life (as far as I recall) but I did. Brief and upsetting. I exploded because, once again, he expressed concern about the cat dying. FFS. The cat is off his food for a day and twitches a bit and that’s it - he’s dying. He’s obsessed with death and I know where the root of that lies. It’s really hard to handle and so undermining for me. If he asks me once more how much longer this is going to go on for (this being debilitating side effects) I think I’ll lose it completely. He just doesn’t get that I have no more idea than he does!
This is hard on us both and he’s been brilliant looking after me. BUT...
Shit weekend. I couldn’t get the strength to turn the button on the boiler to increase the water pressure (temporary solution till I can do without heating and we can get our plumber to investigate more fully) so I asked D to do it. It’s so simple: turn the big white key to your right then twist the button to your left till there’s a good surge of water and the pressure gauge goes up to 2. Then stop it. “Is that clockwise or anticlockwise?” “To your right.” “So it’s clockwise.” Actually it’s not so I grind my teeth and leave him to work it out. Two minutes later, he’s let in so much water, the pressure gauge has gone to max and shut itself off. Why didn’t he just turn it back as I said when it got to 2? I’ve never been able to fathom why he’s so unmanned by anything remotely ‘technical.’
So, no boiler, no heating. I google frantically, I ring Worcester Bosch rather than disturb Stuart on Mothering Sunday. Nothing they suggest works. I try bleeding the radiators but I don’t have much strength. I end up draining the radiator in the bedroom, flopped on the floor, but that doesn’t work. We have one heater for the whole house. Guess who kept that!
Meantime, I’m salivating so much I reckon I produce as much fluid as the radiator I bled. I spend most of the day spitting into cups. I can barely eat, my ulcer is so painful and I am LOW. I have a pressure sore on my coccyx cos I’ve lost all my padding so I can’t sit, flop or lie without pain. No change today, though I mustered the strength to get in the car and drive to Cookridge Hall, chiefly to see the tai chi crowd but also to get warm. Bramhope is gridlocked (the drainage work for the new estate in ‘our’ field started today and they are using temporary lights). But I escaped eventually, only to find the road to Cookridge closed because of an accident and traffic’s being diverted into Bramhope even though one of the exit roads is closed and the other is just queuing cars. Is it surprising I lost my temper with D? Actually yes. I’ve never had a really hysterical rant in my life (as far as I recall) but I did. Brief and upsetting. I exploded because, once again, he expressed concern about the cat dying. FFS. The cat is off his food for a day and twitches a bit and that’s it - he’s dying. He’s obsessed with death and I know where the root of that lies. It’s really hard to handle and so undermining for me. If he asks me once more how much longer this is going to go on for (this being debilitating side effects) I think I’ll lose it completely. He just doesn’t get that I have no more idea than he does!
This is hard on us both and he’s been brilliant looking after me. BUT...
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