1. I can’t access the breastcancercare forum at all. My account is there but I just get Authentication Failed when I try to use it. I’m not addicted but I like to keep up with things (see how I avoided ‘abreast with developments’?) and am particularly cross cos I’m concerned about how my new online friend Wonks has got on today. I’ll try again tomorrow - might be a site fault.
2. I’m officially NED (Test: who can remember what that stands for?) but I’ve been told that I’ll need to be monitored regularly by Oncology because I was so highly node positive. It doesn’t take an idiot to infer that means the chances of a recurrence are higher than one would want. Regularly means every 3-4 months, plus the annual breast clinic check - mammogram due soon. So...
3. Dennis and I have to learn to live with the fact that cancer will continue to be part of our lives indefinitely. Nothing so easy as ‘It ain’t over till the fat lady sings’ here. She won’t be singing.
4. I have some long-term side effects which may or may not ease with time. I’m up to the stage where they should be declining but I’m not noticing any improvement. Tingling fingertips, tingling toes (the peripheral neuropathy), acute sensitivity to pain (honest, this morning I thought I had a huge paper cut from opening the Rice Crispies box. An edge brushed my hand. My brain is being misled - neuropathy). Absence of signals for bodily functions till almost the last minute - bearable. Worst is the swollen upper lip and slight numbness on patches of the tongue and palate and the salivation problems. This affects taste, appetite and gives me sore gums, a lisp and general mouthy weirdness.
5. I’m caught in a loop. Medication causes an unpleasant side effect so I have more medication to mitigate the effect, which in turn causes a side effect. I don’t know what’s what, what to take, what to cut down, what to ignore. I’m seeing the doctor about the pain on Friday - fingers crossed.
6. My noob hurts quite badly (radiotherapy plus neuropathy), providing an excellent reason not to do my exercises. However, the cording is returning. Another loop, another Catch 22. However, I’ve booked an appointment to be measured for my proper prosthesis on Monday afternoon. It only took Friday to this afternoon to get through to the right department! No wonder they could fit me in so quickly - no-one can get through to make an appointment!
7. My hair is growing slowly but surely. I think it looks rather nice but not everyone agrees and I still get double takes from idiot strangers who should know better. I don’t have chemo-curl on my head (yet) but I notice that some of my new leg hair is corkscrewed and there’s quite a lot of ingrowing hairs. Weird. Pubic hair is returning, oddly smooth and silky. BUT I’m peeing without worry now!
8. I’m back driving. Not with the carefree confidence I had before but not fearfully. I just need to relax more. Practice.
9. I’ve got a dental appointment with the dentist who is experienced in chemotherapy effects. Meantime, I’m getting a jaw pain which I hope is imagination or a side effect of the hormone therapy (joint and muscle pain). Perish the thought that it could be an effect of the zometa infusion- that simply doesn’t bear thinking about.
10. It’s beyond wonderful to just have the freedom to arrange these appointments without worrying how ill I may be, whether it will clash with hospital or how I’ll get there.
And I still haven’t mentioned the battlefield beyond the fence (in fact right up to perhaps a metre from our fence). Another time maybe.
Wednesday 28 August 2019
122. Back in the driver’s seat
For decades, I’ve been one of those laid-back, competent drivers, confident they’re doing a slightly-better-than-many job of getting from A to B to C without mishap. It’s a humbling experience to discover all the lazy habits I’ve picked up on the way, have them corrected and find that some major errors would have failed me the test I passed on first attempt - in 1972!! Maybe everyone should have a compulsory refresher session now and then?
Don’t get me wrong. The 2 hours I spent with Automatic Annie in her car were invaluable and, at the end, she told me I was an advanced driver - and she had pointed out all along the things I did well and praised particular manoeuvres. I was left with only a short list of things to correct (obviously the 10 to 2 hold, but also using the centre of the lane when I thought I was being considerate by driving closer to the kerb to allow prats to overtake if they must but she pointed out that I made it easier for people to overtake in what might not be safe circumstances).
So why did I come home shattered? I ended up with my/her wheels ON a roundabout! Another first for me - probably for almost everyone! She’d already pointed out that I hug the roundabout and should not. I should use the full lane. I do this with good reason. Leeds is not blessed with many well-designed roundabouts and some are veritable death traps. They’re being improved slowly, like lights added to what I call ‘Carol’s roundabout’ at Horsforth and a reduction from 4 to 3 lanes on the Lawnswood roundabout, but I’ve witnessed too much terrible driving to feel zero confidence in other drivers, particularly those to my left. So it was simple for me - keep as safely to the right of the lane just in case. Bad driving! We went round and round, covering the same roundabouts till she was happy. I’ve driven my own car each day since and I go out of my way to practise my roundabouts but the fact remains that some of them just don’t lend themselves to staying in the centre of the lane. The lanes are too small and cars on the inner side encroach. I will persist.
So how did I end up ON a roundabout. Please don’t picture me perched on top - it was merely one and a bit tyres on the driver’s side but it was humiliating. Basically, I went to pull out to turn right, a black sports car zoomed out from a parked position (no signal) but I judged I could complete the manoeuvre and it was better than stopping sticking out into a busy road. Unfortunately Annie read it differently. She slammed on the instructor’s brake and pushed the wheel to the right in a second. Instantaneous flashback to accident but I steered to the right. Stuck on the roundabout. It’s a very strange feeling when someone else takes control and the car isn’t doing what you expect it to do. We discussed it afterwards and both understood the other’s perspective (she assumed I hadn’t seen Mr Penis) but it left me shaken so we went round that same route three more times! Then I got in the car as soon as I got home and went back and did it again. I’ll get mighty bored with that route!
I am now a less confident driver - not because of the lesson but because of causing that accident in April - and need to get back to being sure I’m driving well enough that I don’t have to obsess about where I’m positioned. I’m proud to say I’m mastering the new art of NOT looking back once I start a manoeuvre and I’m dutifully following the last car with my eyes so my manoeuvre is smooth. Thank you Annie.
It doesn’t help of course that I’m driving an unfamiliar car and, on first drive, I couldn’t see the dials. I’d dutifully adjusted all mirrors but not the height of the seat and I’m a bit reluctant to adjust the wheel position. To me, a steering wheel should be stuck fast, not adjustable! But nor should it be in my chest so maybe I’d better find out how to get it all best-positioned. It was like my very first driving lesson when Mr Godfrey (my parents’ friends, Audrey and...???) took me out to a nearby practice site, an old airfield, and only realised when we got home that I’d been looking between the spokes of the steering wheel because I was so low down! Long legs mean short body.
Meantime, no more Amber Cabs unless I choose to and I can drive to The Orchard this afternoon without the worry of being stranded without a cab, having been let down twice consecutively and having made a formal complaint! I’m definitely returning to the old Jan lol.
Don’t get me wrong. The 2 hours I spent with Automatic Annie in her car were invaluable and, at the end, she told me I was an advanced driver - and she had pointed out all along the things I did well and praised particular manoeuvres. I was left with only a short list of things to correct (obviously the 10 to 2 hold, but also using the centre of the lane when I thought I was being considerate by driving closer to the kerb to allow prats to overtake if they must but she pointed out that I made it easier for people to overtake in what might not be safe circumstances).
So why did I come home shattered? I ended up with my/her wheels ON a roundabout! Another first for me - probably for almost everyone! She’d already pointed out that I hug the roundabout and should not. I should use the full lane. I do this with good reason. Leeds is not blessed with many well-designed roundabouts and some are veritable death traps. They’re being improved slowly, like lights added to what I call ‘Carol’s roundabout’ at Horsforth and a reduction from 4 to 3 lanes on the Lawnswood roundabout, but I’ve witnessed too much terrible driving to feel zero confidence in other drivers, particularly those to my left. So it was simple for me - keep as safely to the right of the lane just in case. Bad driving! We went round and round, covering the same roundabouts till she was happy. I’ve driven my own car each day since and I go out of my way to practise my roundabouts but the fact remains that some of them just don’t lend themselves to staying in the centre of the lane. The lanes are too small and cars on the inner side encroach. I will persist.
So how did I end up ON a roundabout. Please don’t picture me perched on top - it was merely one and a bit tyres on the driver’s side but it was humiliating. Basically, I went to pull out to turn right, a black sports car zoomed out from a parked position (no signal) but I judged I could complete the manoeuvre and it was better than stopping sticking out into a busy road. Unfortunately Annie read it differently. She slammed on the instructor’s brake and pushed the wheel to the right in a second. Instantaneous flashback to accident but I steered to the right. Stuck on the roundabout. It’s a very strange feeling when someone else takes control and the car isn’t doing what you expect it to do. We discussed it afterwards and both understood the other’s perspective (she assumed I hadn’t seen Mr Penis) but it left me shaken so we went round that same route three more times! Then I got in the car as soon as I got home and went back and did it again. I’ll get mighty bored with that route!
I am now a less confident driver - not because of the lesson but because of causing that accident in April - and need to get back to being sure I’m driving well enough that I don’t have to obsess about where I’m positioned. I’m proud to say I’m mastering the new art of NOT looking back once I start a manoeuvre and I’m dutifully following the last car with my eyes so my manoeuvre is smooth. Thank you Annie.
It doesn’t help of course that I’m driving an unfamiliar car and, on first drive, I couldn’t see the dials. I’d dutifully adjusted all mirrors but not the height of the seat and I’m a bit reluctant to adjust the wheel position. To me, a steering wheel should be stuck fast, not adjustable! But nor should it be in my chest so maybe I’d better find out how to get it all best-positioned. It was like my very first driving lesson when Mr Godfrey (my parents’ friends, Audrey and...???) took me out to a nearby practice site, an old airfield, and only realised when we got home that I’d been looking between the spokes of the steering wheel because I was so low down! Long legs mean short body.
Meantime, no more Amber Cabs unless I choose to and I can drive to The Orchard this afternoon without the worry of being stranded without a cab, having been let down twice consecutively and having made a formal complaint! I’m definitely returning to the old Jan lol.
Saturday 24 August 2019
121. Yippeeeee
Need I say more?
Oh, how can I not? First of all, what’s with the double eyebrow? I can’t see it when I’m doing my makeup. But that’s not a smile-for-the-camera smile. It’s a genuine, I’m-so-happy smile.
The MRI was ‘inconclusive’ in the absence of the contrast dye but nothing worrying was picked up so I’m free at last. It feels so good. There are qualifications to the freedom but I’m not spoiling things by going into detail. It’s enough that, for now, I am considered virtually an ex-patient (though they did steal more blood before I left and Dr D thought I looked pale.) Jesus, I was wearing blusher too!!
I spent the afternoon reading in the sunshine (well, only the bits that are allowed were exposed) and found myself sobbing without any warning. It only lasted about a minute but it was a proper cry and a bit of a release. I wish I could do it more often. I haven’t cried through the whole process, much as I’ve needed to, so it was long overdue and I felt quite human afterwards.
My engagement ring is back on, as well as my gold chain (bit of a nuisance when I’m moisturising my noob as part of the post-radiotherapy regime) but I can’t find my Jo Malone anywhere. No worries - I will drive to Harrogate on Tuesday with Dennis and enjoy a Malone shop experience as a late birthday present (or maybe belated Christmas?). The old Jan is re-emerging.
Today I applied to be a patient representative on Leeds Commissioning Group. They appear to be a bit white/middle class/female-heavy but it looks interesting and, apart from objectivity which I occasionally struggle with when I know best, I am definitely good material. It’ll probably come to nothing but I want to improve patient voice. Meeting some of the older women who seemed so fearful and felt so powerless was an eye-opener for me.
Tomorrow I have my 2-hour driving lesson. I’ve located a pair of kitten heeled shoes as instructed so I can master the swivel technique. I’ll maybe put them on IN the car as I don't want to fall and break an ankle, a high probability given my luck. Freedom beckons...
More another day about the medical minutiae but let’s enjoy the positive vibe for now ;)
Tuesday 20 August 2019
120. Losing the plot
It’s a fair assumption that, after surgery, chemotherapy and radiotherapy, I might begin to feel a bit better. That's fair isn’t it? Not asking too much? It seems it is. Asking too much, I mean, not the fair bit. It’s bloody UNFAIR.
I have felt awful, these last few days, progressively worse. Maybe it’s the gabapentin leaving my system and exposing me to everything it was helping me with (not just the pain apparently). Maybe it’s the effects of anastrozole - how ironic that gabapentin is sometimes used to mitigate the side effects and here’s me cutting it out and discovering I have got not-very-nice side effects after all. Maybe it’s suppressed anxiety about not getting great news at Friday’s appointment? So many maybes but these are the lessons learnt (my personal experience, not necessarily applicable to anyone else):
1. The effects of chemotherapy have a long long reach. Almost 4 months later and I still have several side effects, from peripheral neuropathy and neuropathic pain to someone else’s mouth STILL.
2. The effects of radiotherapy can emerge a long time after. ‘Immediate’ effects are within the first 6 months. Microwaving still going on, pain pretty awful but not debilitating. But let’s not forget the shadow on the lung, the damage to the heart that may increase the risk of future angina (just how does one find out? What is angina?? No, I’m not googling it) and the difficulties swallowing food. I acknowledge I had difficulty with fluids from October and that’s psychological. This isn't.
3. The removal of the hospital cocoon leaves you feeling mighty vulnerable. An oxymoron for you. Now who picks up the pieces?
4. Unanswered questions. My courage has waned and I don't yet have the resilience to face answers I may not like so I have decided not to ask my unasked questions at Friday’s appointment. I’ll have another chance in 3 months’ time. Maybe I’ll feel up to it then.
5. The strategy of dissociation has its immediate benefits but, long term, it’s a crap strategy. I marvel at the fact that I’ve had no real anxiety attack and no panic attack this year - incredible - but it doesn’t give me any greater confidence. The fear of the fear is still here. What’s more, without that cocoon and without something like breast cancer demanding my immediate attention, I feel it seeping back, finding the tiny cracks to worm its way back into daily life. But I’m out of practice and don't spot it coming.
6. The mantle of cancer can’t ever be shaken off. The knowledge that there’s such a thing as secondary cancer (is that the same as metastasis?), that it’s surprisingly common, has to be lived with. I guess I owe a mental apology to Dr T, my psych, the one who reassured me her mother-in-law has had it three times.
7. You get on a medication merry-go-round. Take this. Oh, you have this side effect? Take this. Try that. I’m taking tablets because I’m taking other tablets and, although right now, I’m down to only 3 essentials at night now (down from 13), all the extras to deal with the side effects add up. It’s hardly surprising I’m not bothering with pain relief - too many other tablets to swallow!
I feel so vulnerable. I wake feeling sick every morning now. Is that the anastrozole? Was the gabapentin holding it at bay? That increases my anxiety levels and that makes me feel depressed. It reduces my appetite - yes, I ate better during chemo! Side-effect of anastrozole = loss of appetite. Oh, and weight gain. They cover all bases, it seems. I’m snappy, tearful (without crying of course) and the noise from the building site reduces me to a level of self-pity I haven’t hit for a long time (apart from zombie-phases during chemo).
As for losing the plot, I found myself writing a post on the breastcancercare forum in response to a sneaky advertisement. I knew it was the result of some bot and it’s up to the site to tighten their filters or monitoring but I still couldn’t stop myself having a brief rant at an insentient being with the power to infiltrate a forum for some of the most vulnerable women in the country, who really don’t want to read about erections and balls and penises.
Now I’m going for a long-overdue shower and hope I may pick up a bit of appetite on the way. 3 ginger nuts, 3 Tuc crackers and a slice of toast by 3pm is not great is it! But that’s how I react when I wake up at 7 feeling sick. Heigh ho.
I have felt awful, these last few days, progressively worse. Maybe it’s the gabapentin leaving my system and exposing me to everything it was helping me with (not just the pain apparently). Maybe it’s the effects of anastrozole - how ironic that gabapentin is sometimes used to mitigate the side effects and here’s me cutting it out and discovering I have got not-very-nice side effects after all. Maybe it’s suppressed anxiety about not getting great news at Friday’s appointment? So many maybes but these are the lessons learnt (my personal experience, not necessarily applicable to anyone else):
1. The effects of chemotherapy have a long long reach. Almost 4 months later and I still have several side effects, from peripheral neuropathy and neuropathic pain to someone else’s mouth STILL.
2. The effects of radiotherapy can emerge a long time after. ‘Immediate’ effects are within the first 6 months. Microwaving still going on, pain pretty awful but not debilitating. But let’s not forget the shadow on the lung, the damage to the heart that may increase the risk of future angina (just how does one find out? What is angina?? No, I’m not googling it) and the difficulties swallowing food. I acknowledge I had difficulty with fluids from October and that’s psychological. This isn't.
3. The removal of the hospital cocoon leaves you feeling mighty vulnerable. An oxymoron for you. Now who picks up the pieces?
4. Unanswered questions. My courage has waned and I don't yet have the resilience to face answers I may not like so I have decided not to ask my unasked questions at Friday’s appointment. I’ll have another chance in 3 months’ time. Maybe I’ll feel up to it then.
5. The strategy of dissociation has its immediate benefits but, long term, it’s a crap strategy. I marvel at the fact that I’ve had no real anxiety attack and no panic attack this year - incredible - but it doesn’t give me any greater confidence. The fear of the fear is still here. What’s more, without that cocoon and without something like breast cancer demanding my immediate attention, I feel it seeping back, finding the tiny cracks to worm its way back into daily life. But I’m out of practice and don't spot it coming.
6. The mantle of cancer can’t ever be shaken off. The knowledge that there’s such a thing as secondary cancer (is that the same as metastasis?), that it’s surprisingly common, has to be lived with. I guess I owe a mental apology to Dr T, my psych, the one who reassured me her mother-in-law has had it three times.
7. You get on a medication merry-go-round. Take this. Oh, you have this side effect? Take this. Try that. I’m taking tablets because I’m taking other tablets and, although right now, I’m down to only 3 essentials at night now (down from 13), all the extras to deal with the side effects add up. It’s hardly surprising I’m not bothering with pain relief - too many other tablets to swallow!
I feel so vulnerable. I wake feeling sick every morning now. Is that the anastrozole? Was the gabapentin holding it at bay? That increases my anxiety levels and that makes me feel depressed. It reduces my appetite - yes, I ate better during chemo! Side-effect of anastrozole = loss of appetite. Oh, and weight gain. They cover all bases, it seems. I’m snappy, tearful (without crying of course) and the noise from the building site reduces me to a level of self-pity I haven’t hit for a long time (apart from zombie-phases during chemo).
 |
| Do you think he’d cut the lawn for us? |
Now I’m going for a long-overdue shower and hope I may pick up a bit of appetite on the way. 3 ginger nuts, 3 Tuc crackers and a slice of toast by 3pm is not great is it! But that’s how I react when I wake up at 7 feeling sick. Heigh ho.
Saturday 17 August 2019
119. Woodstock, something for Sheila and then...
Ok, that’s Woodstock out of the way. No escaping it so I had to do my bit. Maybe a bit more later.
Now for Sheila:
Now I have to think about whether I’m ready to ask those questions I’ve not asked. I suspect the answer is no, leaving me with the choice to defer them longer (maybe fret a little occasionally) or take a deep breath and ask, knowing it will take time to process some of the answers. Yes, I’m not daft, I know some of the answers already but I need to hear them from the Expert, not from a forum and other people’s experiences. I’m currently veering towards the defer option as I recognise that emotionally I perhaps don’t have the resilience right now.
My weaning off gabapentin is heading to zero intake - just one tablet tonight (a third of a child’s minimum dose!). It’s not made a jot of difference to my swollen inner lips but I am beginning to notice some improvement in saliva production. That simply has to improve because it’s a bugger trying to swallow food which doesn’t slip down easily. Right now, that’s most food so I have to have water beside me all the time. So far, so good. On the downside, not only is the radiotherapy pain horrid (fortunately sporadic - I’ve been hearing of nightmare experiences I’ve been so fortunate to miss) and the neuropathic pain surprising BUT I’ve discovered that the gabapentin has been holding the side effects of the hormone therapy at bay. I thought it was going to be as easy as my menopause - the occasional hot flush and night sweats - but that’s my naivety for you. Everything is linked. It seems gabapentin is often prescribed to reduce the hot flushes and the joint pain. Dammit. Well, it’s early days so I’m not jumping to conclusions but I’ll be mighty pissed off if I have to choose between pain, sweats and hot flushes or foamy saliva. I’m thinking I’d opt for the pain to be honest.
48 years!!!!!!!! And neither of us has been convicted of murder.
Now for Sheila:
I omitted to mention it was our 48th wedding anniversary on Wednesday. I forgot but was reminded by Trina (who sent another of the glorious Monet bouquets) and Dennis had decided that, as with Christmas and birthdays, it will wait till the all clear. End of anniversary. However, here’s to happy days - with the sad evidence that 1. We never bothered to buy any pictures (hence the word PROOF) 2. The only colour photos were taken by my grandfather on a 35mm camera and are tiny and 3. Refusing to allow my mum to wear a hat was not a good idea. Who the hell suggested a hairpiece!! However, thanks for being a great friend, a beautiful bridesmaid and persisting when I never sent cards. Only you of the three of us has retained that glorious 1971 hair!
Ok, Woodstock. I’m sick of it already because D was too tight to splash out on an exorbitantly priced multi-media boxed set (well, it’s described as a crate) and now it’s sold out. So he’s downloading all 37 albums and struggling. And I have to sympathise with every illegal download glitch. I do admire his persistence though and thoroughly enjoyed the Santana set I heard this morning from downstairs. My best memory of the time (apart from some gems in the film like a heavily stoned and tie-dyed John Sebastian talking to the camera) was taking Dennis to see it the evening before he started his first teaching job when he was, for Dennis, surprisingly nervous. He denies it to this day but he DID start singing along to “I wasn't born to follow.” (An hour later: it’s been bugging me - and this is the price one pays for marrying someone with a faultless memory of music - detail is everything. Ok, since the Byrds turned down the chance to perform at Woodstock, D couldn't have sung along to that track. That was when we went to see Easy Rider earlier in the year. So I’m nearly right. Now I’m wondering, what did he mumble along to??).
Back to the present. Thursday and Friday passed without a last-minute summons from St James’s so I’m back to my 99.8% confident about next Friday. As far as I see it, the only thing that might go wrong is that the MRI has picked up some permanent nerve damage from chemo - but that’s ok. It’s inconvenient and uncomfortable but it’s not ruining my quality of life and it’s obviously no danger to me. So long as I can drive. My refresher driving session is booked for next Sunday and I’m hoping I’ll be independent again, ever grateful to those people who’ve been described by a reader of this blog as ‘a wonderfully supportive group of friends and family’ that I’ve been so lucky to have.
Now I have to think about whether I’m ready to ask those questions I’ve not asked. I suspect the answer is no, leaving me with the choice to defer them longer (maybe fret a little occasionally) or take a deep breath and ask, knowing it will take time to process some of the answers. Yes, I’m not daft, I know some of the answers already but I need to hear them from the Expert, not from a forum and other people’s experiences. I’m currently veering towards the defer option as I recognise that emotionally I perhaps don’t have the resilience right now.
My weaning off gabapentin is heading to zero intake - just one tablet tonight (a third of a child’s minimum dose!). It’s not made a jot of difference to my swollen inner lips but I am beginning to notice some improvement in saliva production. That simply has to improve because it’s a bugger trying to swallow food which doesn’t slip down easily. Right now, that’s most food so I have to have water beside me all the time. So far, so good. On the downside, not only is the radiotherapy pain horrid (fortunately sporadic - I’ve been hearing of nightmare experiences I’ve been so fortunate to miss) and the neuropathic pain surprising BUT I’ve discovered that the gabapentin has been holding the side effects of the hormone therapy at bay. I thought it was going to be as easy as my menopause - the occasional hot flush and night sweats - but that’s my naivety for you. Everything is linked. It seems gabapentin is often prescribed to reduce the hot flushes and the joint pain. Dammit. Well, it’s early days so I’m not jumping to conclusions but I’ll be mighty pissed off if I have to choose between pain, sweats and hot flushes or foamy saliva. I’m thinking I’d opt for the pain to be honest.
48 years!!!!!!!! And neither of us has been convicted of murder.
Thursday 15 August 2019
118.Confession time (warning, a whinge)
If I can’t be honest with myself here, where can I? Thinking back over the past 11 months, I know I shielded myself from a degree of reality. It was how I managed to get through what I’ve got through, which initially felt impossible. However, now I’m nearly free of the commitments and the treatments, the cracks in my shield are widening and a bit more knowledge and understanding of the realities of cancer are seeping through. Warning to You Know Who You Are - this is my rambling thoughts. I KNOW I’m ok and I KNOW I’m safe. I just don’t quite feel it.
Frankly, a bit of me is scared now. Ironic really when the time to be scared of the cancer was when it was a real threat to me. But the not asking questions, not getting bogged down in the specifics of my diagnosis (I still can't reel it off like a lot of women can) have left me in an odd position. I’ve lost almost 11 months of building up resilience to the facts.
What I now know that I wish I didn’t:
1. There’s never a guarantee that the cancer won’t come back. You accept this, choose to live your life to the full or in anticipatory fear, and hope you’ll be one of the lucky ones. Choose? That’s a massive responsibility if you just can’t shake off that nagging fear.
2. Metastasis. I had no idea what it meant. But, like with ‘cancer,’ I keep coming across the word and variations of it (try saying metastasising with a swollen lip and a lisp) now. It’s a frightening thought.
3. Three aspects of my original cancer give cause for concern. I say ‘give’ because I’m only just realising it and haven’t worked through it. I would love to assume it was all past tense but I can’t make those blithe assumptions any more. I have to ask specific questions, even if I’m scared of the answers. What is the significance of “It even broke out in your skin?” Does that mean it had started metastasising? Have the treatments removed that risk? No margins for one of the lumps. I had no idea till recently what margins meant. Again, has the treatment dealt with that? Heavily node positive with suspect nodes in my chest wall (mentioned initially by Dr K after the CT scan but never confirmed as infected - but T, the adjuvant oncology nurse, said not to worry about it, I was No Evidence of Disease). Does that make me more vulnerable to metastasis? It’s all so frightening if I don’t look at it positively and continue to believe that nothing could have survived those treatments.
4. There’s no going back to how things were before. I say ‘it’s only a disease.’ It is and, until recently, I’ve been mystified by the apparent obsession with ‘fighting cancer.’ However, I’m beginning to grasp the idea that there’s an additional factor in cancer - I just can't pinpoint it yet. Is it the fact that we’re all educated to regard it with terror? Is it its potential to kill? Is it the way the barbaric treatment impacts on so many others besides yourself? Surely if I was diagnosed with a heart disease, the impact and fear would be as great? Apparently not. It seems to be accepted by everyone working in the field, and we’re encouraged to accept it, that we need to find a new normal that includes cancer in our life. I don’t get it. Presumably I will eventually.
So here I am, no longer 99.9% confident that I’m cancer-free, that I’m safe and all I have to do now is ride out the side effects. Where am I if I’m not 99.9% confident? Most of the time I’m 98% confident but I have moments when I’d say I’m more like 20% confident and have to rely on my logic to talk me back from that surge of adrenaline that signifies fear. This morning, I thought ahead to next Friday’s appointment. They’d have contacted me by now and called me in if there was any sign of any risk revealed by the MRI. That’s logic. Then a gentle surge of adrenaline sweeps through me (only gentle in comparison to my phobic panics which are beyond description but for now seem to be held at bay, if not a thing of the past). I could get a call this afternoon! Oh shut up Jan. Get back to the Land of Denial that served you so well. Only that’s no longer possible. Admission closed.
It could be because I feel so physically crap. Cutting out the gabapentin to eliminate the possibility that it’s the cause of my mouth and throat problems is all very well and, yes, as I told Dr Wong, I can distinguish now between the different kinds of pain now my ribs have healed. That doesn’t mean the pain isn't a problem. I’m down to 2 tablets (weaning myself off) and the pain in my chest wall is excruciating at times. But it’s twinges or brief moments when I’m caught off guard or in a perfectly natural (but for me impossible) position - like curled on my side. It’s not enough to warrant being on permanent medication in my opinion. Then there’s the neuropathy. What was a slight tingling of the leg nerve(s) is now a painful tingling. I have to make sure I don’t touch my legs or knock against anything because it bloody hurts. I have an itch inside the pad of my numb big toe. Try scratching a damaged nerve. I could go on and on, all these little pains exposed now I’m virtually off the gabapentin - and I still don’t know if it will help the dry mouth, the saliva problem, the difficulty swallowing. It makes sense that it will but it will be days before I can say yeah or nay.
Roll on next Friday. Chin up, shoulders back. Where’s my implicit faith I had before. Please come back....
Meantime, just look at this hair!
It feels gorgeous (though it’s hopeless protection against a raindrop). And eyelashes!! Shame about the skin - it kind of glowed during chemo but it’s heading back to 68 yo skin. Heigh ho. And yes, I’m still in my pjs because I was feeling low but, now I’ve offloaded, I’m off for a shower and then a read in the tiny bit of gale-blasted sun we have.
Frankly, a bit of me is scared now. Ironic really when the time to be scared of the cancer was when it was a real threat to me. But the not asking questions, not getting bogged down in the specifics of my diagnosis (I still can't reel it off like a lot of women can) have left me in an odd position. I’ve lost almost 11 months of building up resilience to the facts.
What I now know that I wish I didn’t:
1. There’s never a guarantee that the cancer won’t come back. You accept this, choose to live your life to the full or in anticipatory fear, and hope you’ll be one of the lucky ones. Choose? That’s a massive responsibility if you just can’t shake off that nagging fear.
2. Metastasis. I had no idea what it meant. But, like with ‘cancer,’ I keep coming across the word and variations of it (try saying metastasising with a swollen lip and a lisp) now. It’s a frightening thought.
3. Three aspects of my original cancer give cause for concern. I say ‘give’ because I’m only just realising it and haven’t worked through it. I would love to assume it was all past tense but I can’t make those blithe assumptions any more. I have to ask specific questions, even if I’m scared of the answers. What is the significance of “It even broke out in your skin?” Does that mean it had started metastasising? Have the treatments removed that risk? No margins for one of the lumps. I had no idea till recently what margins meant. Again, has the treatment dealt with that? Heavily node positive with suspect nodes in my chest wall (mentioned initially by Dr K after the CT scan but never confirmed as infected - but T, the adjuvant oncology nurse, said not to worry about it, I was No Evidence of Disease). Does that make me more vulnerable to metastasis? It’s all so frightening if I don’t look at it positively and continue to believe that nothing could have survived those treatments.
4. There’s no going back to how things were before. I say ‘it’s only a disease.’ It is and, until recently, I’ve been mystified by the apparent obsession with ‘fighting cancer.’ However, I’m beginning to grasp the idea that there’s an additional factor in cancer - I just can't pinpoint it yet. Is it the fact that we’re all educated to regard it with terror? Is it its potential to kill? Is it the way the barbaric treatment impacts on so many others besides yourself? Surely if I was diagnosed with a heart disease, the impact and fear would be as great? Apparently not. It seems to be accepted by everyone working in the field, and we’re encouraged to accept it, that we need to find a new normal that includes cancer in our life. I don’t get it. Presumably I will eventually.
So here I am, no longer 99.9% confident that I’m cancer-free, that I’m safe and all I have to do now is ride out the side effects. Where am I if I’m not 99.9% confident? Most of the time I’m 98% confident but I have moments when I’d say I’m more like 20% confident and have to rely on my logic to talk me back from that surge of adrenaline that signifies fear. This morning, I thought ahead to next Friday’s appointment. They’d have contacted me by now and called me in if there was any sign of any risk revealed by the MRI. That’s logic. Then a gentle surge of adrenaline sweeps through me (only gentle in comparison to my phobic panics which are beyond description but for now seem to be held at bay, if not a thing of the past). I could get a call this afternoon! Oh shut up Jan. Get back to the Land of Denial that served you so well. Only that’s no longer possible. Admission closed.
It could be because I feel so physically crap. Cutting out the gabapentin to eliminate the possibility that it’s the cause of my mouth and throat problems is all very well and, yes, as I told Dr Wong, I can distinguish now between the different kinds of pain now my ribs have healed. That doesn’t mean the pain isn't a problem. I’m down to 2 tablets (weaning myself off) and the pain in my chest wall is excruciating at times. But it’s twinges or brief moments when I’m caught off guard or in a perfectly natural (but for me impossible) position - like curled on my side. It’s not enough to warrant being on permanent medication in my opinion. Then there’s the neuropathy. What was a slight tingling of the leg nerve(s) is now a painful tingling. I have to make sure I don’t touch my legs or knock against anything because it bloody hurts. I have an itch inside the pad of my numb big toe. Try scratching a damaged nerve. I could go on and on, all these little pains exposed now I’m virtually off the gabapentin - and I still don’t know if it will help the dry mouth, the saliva problem, the difficulty swallowing. It makes sense that it will but it will be days before I can say yeah or nay.
Roll on next Friday. Chin up, shoulders back. Where’s my implicit faith I had before. Please come back....
Meantime, just look at this hair!
Sunday 11 August 2019
117. Unnecessary MRI
On a Sunday morning, before 9 am too. I didn’t stop going to church for nothing, you know. It was that getting up in the morning, after a Saturday job too. I needed one lie-in and Church lost out - as it would have anyway as I became more sceptical.
Version 1: I am claustrophobic. The mere idea of being required to lie motionless for a long time in a long dark tunnel where noises are so loud, you can’t hear your comforting music, is horrifying. You can’t tune out into a meditation or so anything but try hard not to panic and ignore each surge of horror with each thought of what’s it doing to me? Diarrhoea in the morning; unable to swallow yet desperate for sips of water. Jerky conversations in the waiting room; sitting hunched with cold like an old lady. Obsessive clock-watching - they said 8.50, it’s 8.52. They did say I’d arrived didn't they? Anything not to be alone with my terrified thoughts of The Tunnel. Don’t think about being injected with dye - it might not happen. Don’t think about it. Stand up and pace around. I can’t do this. It’s not necessary. I’m fine. It’s not bloody fair.
The Reality: I’m claustrophobic and required to lie motionless for up to 90 minutes. I have half my lorazepam left, prescribed to ensure no panic during chemotherapy. I take a tablet at 8am, then another in the taxi at 8.30. As Trina described them (quoting someone else) “lor-a-ze-daa-aamn .” There’s no buzz - you just feel it’s all ok. Great stuff - if only it weren’t dangerously addictive (the old Ativan scandal of the 1980s, as I recall). We find our way up an iffy lift and through the maze of corridors. I joke with the receptionist about never finding our way out again, complete a form and wait. A delightful young man comes to fetch me. I’m suitably dressed (no metal bits) and I’ve brought my cashmere bed socks as I know I’ll get cold feet (not that kind). I leave my bag (that’s a first) and watch with Dennis who has nothing to do but fret now.
The vein in my arm lets me down. Ouch. Nice long bruise there. The vein in my hand lets me down. Probably it’s protesting after months of misuse, it was getting used to a rest. Yep, a bump and a bruise later. That one hurt. He’s only allowed two goes so he goes to fetch the radiologist. Next vein is blocked. I ask if they could use my feet as I’ve some good ones there - they aren’t keen on feet.
I say it’s a good job needles don’t bother me but the building could be on fire and I’d take it in my stride.
Andy, the radiologist, decides to go ahead and get the basics done and have a further try later. They turn on my CD (a carefully chosen relaxation tape that I won’t tap my feet to). Then I’m drawn into the tunnel, a neck support keeping my chin up and a helmet giving me a periscope view of my legs and the room - optical illusions at their best.
And the banging begins. Some of it has an appealing rhythm like a slow bass guitar. Some clang or grind or make my teeth shake in their sockets. Why bother taking ‘music?’ I reckon I hear her voice 4 times, briefly, in the 40 minutes. In the meantime, I just do my own relaxation moves and chill. Occasionally I open my eyes to show an interest in my knees but mostly I’m intrigued by the noises and what they signify,
I’m rolled back out so Andy can inject the dye. He loses patience and gives up far too easily but assures me he has clear enough images to be able to do without it. Am I going to complain?? Only if results are inconclusive and I have to have another! Then it’s up, remove the headphones (the only painful bit apart from the blood flops) and back to normal. Down to Costa for half a muffin and a cuppa. Then another 12 quid for a cab.
All I have to do now is get Dennis through the next 12 days. Discharge awaits....
And another FIRST notched up. Well done me :)
Version 1: I am claustrophobic. The mere idea of being required to lie motionless for a long time in a long dark tunnel where noises are so loud, you can’t hear your comforting music, is horrifying. You can’t tune out into a meditation or so anything but try hard not to panic and ignore each surge of horror with each thought of what’s it doing to me? Diarrhoea in the morning; unable to swallow yet desperate for sips of water. Jerky conversations in the waiting room; sitting hunched with cold like an old lady. Obsessive clock-watching - they said 8.50, it’s 8.52. They did say I’d arrived didn't they? Anything not to be alone with my terrified thoughts of The Tunnel. Don’t think about being injected with dye - it might not happen. Don’t think about it. Stand up and pace around. I can’t do this. It’s not necessary. I’m fine. It’s not bloody fair.
 |
| Noooooooooooo sob sob |
The Reality: I’m claustrophobic and required to lie motionless for up to 90 minutes. I have half my lorazepam left, prescribed to ensure no panic during chemotherapy. I take a tablet at 8am, then another in the taxi at 8.30. As Trina described them (quoting someone else) “lor-a-ze-daa-aamn .” There’s no buzz - you just feel it’s all ok. Great stuff - if only it weren’t dangerously addictive (the old Ativan scandal of the 1980s, as I recall). We find our way up an iffy lift and through the maze of corridors. I joke with the receptionist about never finding our way out again, complete a form and wait. A delightful young man comes to fetch me. I’m suitably dressed (no metal bits) and I’ve brought my cashmere bed socks as I know I’ll get cold feet (not that kind). I leave my bag (that’s a first) and watch with Dennis who has nothing to do but fret now.
The vein in my arm lets me down. Ouch. Nice long bruise there. The vein in my hand lets me down. Probably it’s protesting after months of misuse, it was getting used to a rest. Yep, a bump and a bruise later. That one hurt. He’s only allowed two goes so he goes to fetch the radiologist. Next vein is blocked. I ask if they could use my feet as I’ve some good ones there - they aren’t keen on feet.
I say it’s a good job needles don’t bother me but the building could be on fire and I’d take it in my stride.
Andy, the radiologist, decides to go ahead and get the basics done and have a further try later. They turn on my CD (a carefully chosen relaxation tape that I won’t tap my feet to). Then I’m drawn into the tunnel, a neck support keeping my chin up and a helmet giving me a periscope view of my legs and the room - optical illusions at their best.
And the banging begins. Some of it has an appealing rhythm like a slow bass guitar. Some clang or grind or make my teeth shake in their sockets. Why bother taking ‘music?’ I reckon I hear her voice 4 times, briefly, in the 40 minutes. In the meantime, I just do my own relaxation moves and chill. Occasionally I open my eyes to show an interest in my knees but mostly I’m intrigued by the noises and what they signify,
I’m rolled back out so Andy can inject the dye. He loses patience and gives up far too easily but assures me he has clear enough images to be able to do without it. Am I going to complain?? Only if results are inconclusive and I have to have another! Then it’s up, remove the headphones (the only painful bit apart from the blood flops) and back to normal. Down to Costa for half a muffin and a cuppa. Then another 12 quid for a cab.
All I have to do now is get Dennis through the next 12 days. Discharge awaits....
And another FIRST notched up. Well done me :)
Saturday 10 August 2019
116. This is for Lesley...
Things I remember:
Entering the form room for the first time and seeing only one face I recognised. My heart sank because I knew she was posh - I’d seen her once when our Sunday Schools combined and she’d worn a hat! Susan, my apologies for prejudice.
Indoor and outdoor shoes from Clarks (and ne’er the twain shall cross). AND an initialled shoe bag!
The weird collar of our summer frocks. Compulsory but a bugger to sew (not that my mum ever used the word but she did say it was a ‘difficult’ pattern, someone who could do anything with a sewing machine!)
Miss Waterlow entering the classroom for our first History lesson, clambering up the dais and sitting cross-legged on the lectern (!!), tweed skirt and knitted stockings regardless, lecturing us about Amnesty International and the need to understand the world around us through its history - then going on to teach us about irrelevant medieval monasteries. But I thought it was Miss Freeman who taught us the modern stuff like the burning of the Reichstag?
Our first hockey lesson. Being hit on the back of the head by some unknown show-off who knew how to flick the ball. After that, I opted for left or right back, preferably goalkeeper, where the action was minimal. My mum’s heart was broken - she’d played for Surrey Juniors at 13 and hockey kit was her priority when it came to uniform purchases. One barely used stick and two reluctantly worn boots. Sorry Mum.
Believing the Prize Day award of a day off before Christmas was really because we’d done so well, not that the staff wanted to go Christmas shopping. Feeling sorry for Miss Morton because she ‘wasn’t allowed’ to wear a gown like the other teachers on stage because she’d not been to university - and vowing never to be so humiliated, by never becoming a teacher (ha ha). I’ve never actually worn a cap and gown, despite everything. As Dennis said when asked what he wore to get his degree: “My pyjamas.”
Our first hockey lesson. Being hit on the back of the head by some unknown show-off who knew how to flick the ball. After that, I opted for left or right back, preferably goalkeeper, where the action was minimal. My mum’s heart was broken - she’d played for Surrey Juniors at 13 and hockey kit was her priority when it came to uniform purchases. One barely used stick and two reluctantly worn boots. Sorry Mum.
Believing the Prize Day award of a day off before Christmas was really because we’d done so well, not that the staff wanted to go Christmas shopping. Feeling sorry for Miss Morton because she ‘wasn’t allowed’ to wear a gown like the other teachers on stage because she’d not been to university - and vowing never to be so humiliated, by never becoming a teacher (ha ha). I’ve never actually worn a cap and gown, despite everything. As Dennis said when asked what he wore to get his degree: “My pyjamas.”
4 different Chemistry teachers in the third form, ending with Mrs Cassirer who I didn’t know could teach - and the need to lower the passmark to 40% to get enough of us through, thus maintaining my 100% record of exam passes brought to a halt at university when I got 16% for economics (and 25% on resit - they lowered the passmark so we could move up to year 2!). There was a good reason - lectures were at 9am. I attended 2 all year. How careless we were of our education then.
Pippa H trying to get us to play horses in the playground. We were 11. I hated horses, had never been on one and, even at that age, thought it seriously uncool.
Being alphabetically so close to Sandra H so I had to grit my teeth through every exam as she breathed heavily through her mouth.
Only ever coming first in one exam in all those years, and that was RE, tying with C who I’d watched cheating. Oh the pain and injustice - I only needed one success to be happy.
Being alphabetically so close to Sandra H so I had to grit my teeth through every exam as she breathed heavily through her mouth.
Only ever coming first in one exam in all those years, and that was RE, tying with C who I’d watched cheating. Oh the pain and injustice - I only needed one success to be happy.
Derrian W claiming she was pregnant when she had a man’s hankie stuffed up her jumper. I didn’t know whether to feel contempt or pity. I settled for bemusement.
Aeolus and his bag of winds - and Miss Andrews pretending she didn't know why we were suppressing hysteria.
Decorating the teacher’s chair at Christmas by adding angel wings and a halo - and the tears of humiliation that came to Miss Freeman’s eyes. I never understood how disempowered she felt in our presence. There were classes I hated as a teacher but I never felt helpless. Our bullying (as she reflected when we went on the Italian trip) was nothing to what was going on in the real world of education!
Jane W’s mother arriving at the cathedral in a real fur coat.
Singing our hearts out in assembly to Non Nobis Domine (in your case, mouthing?).
The assembly on the exact angle to wear our red hats, faced with the perils of backcombing and wide headbands, thanks to the Tennant sisters and the Bone twins.
Singing our hearts out in assembly to Non Nobis Domine (in your case, mouthing?).
The assembly on the exact angle to wear our red hats, faced with the perils of backcombing and wide headbands, thanks to the Tennant sisters and the Bone twins.
 |
| How do you fit a red bowler hat on that?? |
Me and another miscreant putting talc on our faces after extras at lunchtime so we might go to sick bay and miss lessons. The closest I got to naughty, I think, except our giggles in History over MPs on the floor and various other lewd (to a 14yo) scenarios.
Never, not even now, being able to spell Miss Mdreski’s name and the nightmare of getting my mum to write a note so I could go to the dentist, knowing the correct format was required but unable to help with the spelling.
Never, not even now, being able to spell Miss Mdreski’s name and the nightmare of getting my mum to write a note so I could go to the dentist, knowing the correct format was required but unable to help with the spelling.
The tuck shop, with the sophisticated cheese and pineapple on a cocktail stick. Food hygiene’s nightmare.
 |
| How cool was this! |
Miss Morton humiliating me, once by summoning me to the front and telling everyone how arrogant I was to mark my own work as perfect (David had marked it in pencil without my knowing - and it was without error!); once by informing me in no uncertain terms that it was gross bad manners to avoid your form teacher’s eyes in the street and the proper behaviour was to say “Good afternoon, Miss Morton.” Then demanding I repeat it after her.
Sexy Rexy’s bandy legs
The nightmare of being trapped in the pottery studio with Miss Martin. I still have the pottery figure of a woman that successfully fired - and it’s her idea of a woman (fat).
Miss Martin telling me I was cynical. My eyes welled up, even though I didn’t know what it mean lol. I was 11 for god’s sake! She was right of course.
Christine and me in perpetual competition for Good Work Marks for Tudor House - you were in Hanover, Lesley and Susan in Windsor...
Initials 2 inches square, embroidered in chain stitch of the appropriate House colour onto every bloody item of PE wear, including the ghastly woollen gym skirt, measuring 4 inches from the floor when kneeling. Then we grew up and they were minis - there was method in that madness
Initials 2 inches square, embroidered in chain stitch of the appropriate House colour onto every bloody item of PE wear, including the ghastly woollen gym skirt, measuring 4 inches from the floor when kneeling. Then we grew up and they were minis - there was method in that madness
 |
| The trope |
 |
| The reality |
Above all, our friendships over all those years - you, Susan, Lesley and me; later Pat, even later Anne and Hilary as we were beginning to head in different directions - and all along, so many others like Julie (Wibnof), Katalin, Cilla, Mair, Christine, Alison, Elizabeth, Alison, Jane, Gail who won all our prizes.... and our form teachers with their work cut out. Mrs Friend told us after A levels that she’d been warned we were “a little bit strange.” ROFL.
Lovely not to write anything about health (apart from the talcum powder bit). I could go on and on..... I’ll answer the questions after tomorrow’s MRI. Ooops, it snuck in ;)
Friday 9 August 2019
115. Acts of kindness (again)
We’ve had rather a lot on our plates this past year (it is 11 months since it all began!) and Dennis tends to be unmanned by anything remotely technical while I am just bone idle, with a high tolerance for the ‘untidy.’ There’s no doubt our home has been somewhat neglected - though I did discover Den had touched up the paintwork on the bannister, by grabbing the newel post while it was still sticky.
So what a pleasure it was to have Alan and Kay come round yesterday, on a glorious morning, Alan equipped with wellies and a Karcher no 5 (we only have a no 4 and it’s never been used lol) and Kay armed with trowel and gardening gloves. In a couple of hours, much of our front drive had been transformed from a stained and weed-ridden embarrassment and our front verge was weeded and ready for a good dig, which Den will enjoy, and some judicious planting.
Alan returned today to finish it off since the afternoon looked good. He and Dennis got caught in the heaviest downpour I’ve seen here. So any surviving dirt has now been washed away and the drive is pristine. All we need now is some moss repellent and then we can get sanding - something even I can manage, though deadheading one rose bush was pretty painful this afternoon. I’m just not used to bending.
I got texted a link from my medical practice, some research into local community services for cancer patients. This set me thinking about the simple things that we need at some time - someone to pick up a prescription, a lift to the surgery or cashpoint, a bit of shopping... Not everyone has a neighbour like I do or friends eager to drive me around but there must be countless people who’d happily help if only there were a local database. And why stop at cancer? I know the funding is specifically for cancer patients and is probably more about support groups and advice centres and that will evolve separately but what little effort would it take to build up something so useful. I’d happily help.
Dr Wong rang this afternoon as I want to stop taking gabapentin to see if it IS the cause of the horrible mouth problems I get. I was surprised to find she was well-informed about my situation, having been the doctor who made the initial referral. We were talking about how easy it would have been to miss it - she said what she found did not fit the expected symptoms for breast cancer and she was very surprised at the eventual diagnosis so... yes, I’m a lucky woman (my words, not hers).
I’m not sure I’ll be thinking the same on Sunday morning when everyone is enjoying the Sunday papers and a leisurely start to the day and I’m stuck motionless in a noisy tunnel, thinking ‘If I can sit through chemotherapy, I can lie through this.’
So what a pleasure it was to have Alan and Kay come round yesterday, on a glorious morning, Alan equipped with wellies and a Karcher no 5 (we only have a no 4 and it’s never been used lol) and Kay armed with trowel and gardening gloves. In a couple of hours, much of our front drive had been transformed from a stained and weed-ridden embarrassment and our front verge was weeded and ready for a good dig, which Den will enjoy, and some judicious planting.
Alan returned today to finish it off since the afternoon looked good. He and Dennis got caught in the heaviest downpour I’ve seen here. So any surviving dirt has now been washed away and the drive is pristine. All we need now is some moss repellent and then we can get sanding - something even I can manage, though deadheading one rose bush was pretty painful this afternoon. I’m just not used to bending.
I got texted a link from my medical practice, some research into local community services for cancer patients. This set me thinking about the simple things that we need at some time - someone to pick up a prescription, a lift to the surgery or cashpoint, a bit of shopping... Not everyone has a neighbour like I do or friends eager to drive me around but there must be countless people who’d happily help if only there were a local database. And why stop at cancer? I know the funding is specifically for cancer patients and is probably more about support groups and advice centres and that will evolve separately but what little effort would it take to build up something so useful. I’d happily help.
Dr Wong rang this afternoon as I want to stop taking gabapentin to see if it IS the cause of the horrible mouth problems I get. I was surprised to find she was well-informed about my situation, having been the doctor who made the initial referral. We were talking about how easy it would have been to miss it - she said what she found did not fit the expected symptoms for breast cancer and she was very surprised at the eventual diagnosis so... yes, I’m a lucky woman (my words, not hers).
I’m not sure I’ll be thinking the same on Sunday morning when everyone is enjoying the Sunday papers and a leisurely start to the day and I’m stuck motionless in a noisy tunnel, thinking ‘If I can sit through chemotherapy, I can lie through this.’
Monday 5 August 2019
114. Like minds
Yesterday I had a second ‘group’ experience and it was very different. On my last day of treatment, I was told about a local Facebook group, the (Mid Yorkshire) MY Breast Cancer Support Group and I applied to join a few weeks back. A delightfully friendly woman called Sara messaged me a few times and I’ve been hovering around the group, getting a feel for it. Unfortunately for me, the focus is Pinderfields Hospital in Wakefield and a lot of the activities they organise are Wakefield and beyond.To a normal person, that’s a short drive. To me, it’s a huge obstacle, certainly unachievable right now. It does beg the question, why is there nothing similar for St James’s?
Yesterday, they were holding a fund-raising event at Rawdon, 10-15 minutes from here. I decided to go by cab. Me, going on my own into an event where I know no one? This just isn’t me. Maybe it’s part of a subtle character transformation - time will tell.
The event was packed. Two women, who I later discovered were a pair of sisters who had both had breast cancer, were having their heads shaved as part of a gigantic fund-raising effort by a young woman called Sherine who is now being treated for secondary cancer. Pinderfields, it turns out, has only two cold caps for the whole chemo unit and she’s raising £40k to get four more. As she said, she saw someone arrive for chemo only to find the cold cap (something that is carefully timed and adds hours to treatment time) still in use so she had to have treatment without it. Sherine quite rightly believes every chemo patient should have the option at least.
I find this astounding. St James’s has these by the dozen. Ok, chemo is on more of a factory scale than the domestic workshop scale of Pinderfields (bit of history there, folks - it just slipped in) but I can’t recall ever seeing more than one person in any of my many chemo sessions (13 now) using the cold cap. I’ve also seen them stacked in a corner where the ward assistant (for whom Dennis developed a bit of a crush - she did have a lovely smile so it wasn’t just her egg sandwiches) goes for her supplies. Why don’t the hospitals liaise? Pinderfields patients have to attend St James’s for radiotherapy so it’s not like there’s no link already established.
Frankly, I couldn’t see any attraction in the idea. I’ve been told by people who’ve used, or tried to use them that they are very tight and constricting, hurt like hell till you get used to it (they freeze the hair follicles) and add hours to your treatment time. However, I imagine if you’ve spent all your life revelling in long locks, tending your split ends and it’s important to your self image, it could be devastating and dehumanising to lose your hair - a bit like me and my eyelashes (I smile every day when I apply mascara to more lower lashes than I have had since teenage!). The only visual image I can conjure up for comparison is too non-PC for me even to take the thought further. - but they do look daft!
Anyway, I was introduced to Sara who gave up whatever she was doing to sit and chat with me. Then she introduced me to Sherine and, during our conversation, we exchanged a stroke of each other’s hair, both of us admitting that we love stroking our hair! It’s GORGEOUS. I’d keep it like this just for the therapeutic benefits of stroking my own head. It feels like stroking a kitten. However I suspect the soft scalp-hugging hair will soon turn back to coarser adult hair. I also chatted to Lynne who was selling wonderful tote bags that their craft group makes (of course I did - three and one for Trina. Oops, I haven’t told her - maybe she’ll receive it before reading this. Why didn’t I just delete it?). Lynne’s group meets in Ossett which is Wakefield way and though I happily and miserably drove to Methley Park, which is in that direction, Ossett feels too far for me.
What struck me was the real friendship, warmth and affection that existed between all these different groups of women. They all met either through treatment (hardly anyone speaks to anyone else at St James’s) or through The Haven. Maybe I do need to give it another go after all. I did visit when I was at a very low ebb, while I was still catastrophising about chemo.
I’d love to put up some pictures but it’s other people’s privacy- and I didn’t take any, not even of the head shaving! Anyway, back to elephants and a book I am slowly beginning to see some readability in. I’m told it has a twist at the end so I haven’t looked but - FOR MAUREEN - here’s my prediction. The narrator is dead. I’m basing this guess/deduction on the fact that there is a twist and Carol O’Connell wrote a brilliant book “The Judas Child” in the last century. You can chuckle away if I’m way off.
Yesterday, they were holding a fund-raising event at Rawdon, 10-15 minutes from here. I decided to go by cab. Me, going on my own into an event where I know no one? This just isn’t me. Maybe it’s part of a subtle character transformation - time will tell.
The event was packed. Two women, who I later discovered were a pair of sisters who had both had breast cancer, were having their heads shaved as part of a gigantic fund-raising effort by a young woman called Sherine who is now being treated for secondary cancer. Pinderfields, it turns out, has only two cold caps for the whole chemo unit and she’s raising £40k to get four more. As she said, she saw someone arrive for chemo only to find the cold cap (something that is carefully timed and adds hours to treatment time) still in use so she had to have treatment without it. Sherine quite rightly believes every chemo patient should have the option at least.
I find this astounding. St James’s has these by the dozen. Ok, chemo is on more of a factory scale than the domestic workshop scale of Pinderfields (bit of history there, folks - it just slipped in) but I can’t recall ever seeing more than one person in any of my many chemo sessions (13 now) using the cold cap. I’ve also seen them stacked in a corner where the ward assistant (for whom Dennis developed a bit of a crush - she did have a lovely smile so it wasn’t just her egg sandwiches) goes for her supplies. Why don’t the hospitals liaise? Pinderfields patients have to attend St James’s for radiotherapy so it’s not like there’s no link already established.
Frankly, I couldn’t see any attraction in the idea. I’ve been told by people who’ve used, or tried to use them that they are very tight and constricting, hurt like hell till you get used to it (they freeze the hair follicles) and add hours to your treatment time. However, I imagine if you’ve spent all your life revelling in long locks, tending your split ends and it’s important to your self image, it could be devastating and dehumanising to lose your hair - a bit like me and my eyelashes (I smile every day when I apply mascara to more lower lashes than I have had since teenage!). The only visual image I can conjure up for comparison is too non-PC for me even to take the thought further. - but they do look daft!
Anyway, I was introduced to Sara who gave up whatever she was doing to sit and chat with me. Then she introduced me to Sherine and, during our conversation, we exchanged a stroke of each other’s hair, both of us admitting that we love stroking our hair! It’s GORGEOUS. I’d keep it like this just for the therapeutic benefits of stroking my own head. It feels like stroking a kitten. However I suspect the soft scalp-hugging hair will soon turn back to coarser adult hair. I also chatted to Lynne who was selling wonderful tote bags that their craft group makes (of course I did - three and one for Trina. Oops, I haven’t told her - maybe she’ll receive it before reading this. Why didn’t I just delete it?). Lynne’s group meets in Ossett which is Wakefield way and though I happily and miserably drove to Methley Park, which is in that direction, Ossett feels too far for me.
What struck me was the real friendship, warmth and affection that existed between all these different groups of women. They all met either through treatment (hardly anyone speaks to anyone else at St James’s) or through The Haven. Maybe I do need to give it another go after all. I did visit when I was at a very low ebb, while I was still catastrophising about chemo.
I’d love to put up some pictures but it’s other people’s privacy- and I didn’t take any, not even of the head shaving! Anyway, back to elephants and a book I am slowly beginning to see some readability in. I’m told it has a twist at the end so I haven’t looked but - FOR MAUREEN - here’s my prediction. The narrator is dead. I’m basing this guess/deduction on the fact that there is a twist and Carol O’Connell wrote a brilliant book “The Judas Child” in the last century. You can chuckle away if I’m way off.
Friday 2 August 2019
113. “Moving Forward”
Today I did the Moving Forward course at St James’s. There’s not much more annoying than being a former trainer and attending a course run by a volunteer. I could not let go of my critical hat and the day got progressively less interesting or useful. I’m now embarrassed to admit that, in the comments box at the end I put “Please don’t read from PowerPoint slides. It stops eye contact and communication and reduces the impact of the messages you want us to absorb.” Ouch! Too late to change it.
There were 10 women, all with different forms of breast cancer, at different stages of treatment/freedom and all ages, from a woman with a young family to a couple of elderly women, both of whom are really struggling and were very emotional. The trainer herself had had breast cancer and a breast care nurse ran the first main session, which was by far the most interesting, even if it didn’t address a big elephant in the room - what’s the likelihood of it returning? She explained why a mastectomy was required for DCIS (non-invasive breast cancer in its very early stages) but most of it was about reconstructions, problems with prostheses, how we feel about ourselves etc. I’d say probably only about a third of us had had a full mastectomy without a reconstruction, which surprised me.
I guess the section on emotional wellbeing was interesting, mainly because at last we got to work in small groups briefly and talk to each other, but it was fairly simplistic. I don’t know how it could have been anything different, considering the huge range of feelings we might each have experienced, suppressed or just missed out on. Like me not crying? Then of course, my experience of mental health and mental illness is fairly extensive so I found it annoying to see little tropes like crying being equated with depression. Nope. Real depression is nothing like that.
Healthy eating was uninteresting for me but hilarious in a way because we had to do our own Eatwell Plate in groups. How many times have I seen that bloody plate? How many documents have I proofread documents that focus on it? How many years did I teach it?? Suffice to say, I got the proportions more or less right but the content?? No chance. 2/5 - not bad I guess for someone with little interest in food. And no, it didn’t prick my conscience. It was great to see I feature in the healthy weight category though.
Exercise... least said.... but I do have written in huge letters across my ‘workbook’ BE ACTIVE OR ELSE... and the last bit was about sources of support, most of which I am fortunate not to need. Before you think how arrogant, I mean I’m retired and don’t have financial worries. I certainly need support in terms of breast care and, once I’m driving, I’d like to use the opportunities available at the Robert Ogden Centre. There’s also a new centre opening in October called Maggie’s, which will be the base for counselling and a lot of support therapies, the difference being that the Robert Ogden centre is run by volunteers and Maggie’s will be a ‘professional’ service.
I’ve exchanged email addresses with a woman who lives in Cookridge who gave me a lift home and offered to drive her to the Haven once I’m driving again as she’s avoided it because it’s unfamiliar territory. Maureen did it for me, I can pay it forward. Just hope I don’t jump a red light again lol.
I sat and basked in the sun for 10 minutes in the lunch break and spotted this beautiful rose. I couldn’t quite capture the colour but it’s still lovely:
So what’s my plan of action now I’m all fired up to move forward? Guess.
There were 10 women, all with different forms of breast cancer, at different stages of treatment/freedom and all ages, from a woman with a young family to a couple of elderly women, both of whom are really struggling and were very emotional. The trainer herself had had breast cancer and a breast care nurse ran the first main session, which was by far the most interesting, even if it didn’t address a big elephant in the room - what’s the likelihood of it returning? She explained why a mastectomy was required for DCIS (non-invasive breast cancer in its very early stages) but most of it was about reconstructions, problems with prostheses, how we feel about ourselves etc. I’d say probably only about a third of us had had a full mastectomy without a reconstruction, which surprised me.
I guess the section on emotional wellbeing was interesting, mainly because at last we got to work in small groups briefly and talk to each other, but it was fairly simplistic. I don’t know how it could have been anything different, considering the huge range of feelings we might each have experienced, suppressed or just missed out on. Like me not crying? Then of course, my experience of mental health and mental illness is fairly extensive so I found it annoying to see little tropes like crying being equated with depression. Nope. Real depression is nothing like that.
Healthy eating was uninteresting for me but hilarious in a way because we had to do our own Eatwell Plate in groups. How many times have I seen that bloody plate? How many documents have I proofread documents that focus on it? How many years did I teach it?? Suffice to say, I got the proportions more or less right but the content?? No chance. 2/5 - not bad I guess for someone with little interest in food. And no, it didn’t prick my conscience. It was great to see I feature in the healthy weight category though.
Exercise... least said.... but I do have written in huge letters across my ‘workbook’ BE ACTIVE OR ELSE... and the last bit was about sources of support, most of which I am fortunate not to need. Before you think how arrogant, I mean I’m retired and don’t have financial worries. I certainly need support in terms of breast care and, once I’m driving, I’d like to use the opportunities available at the Robert Ogden Centre. There’s also a new centre opening in October called Maggie’s, which will be the base for counselling and a lot of support therapies, the difference being that the Robert Ogden centre is run by volunteers and Maggie’s will be a ‘professional’ service.
I’ve exchanged email addresses with a woman who lives in Cookridge who gave me a lift home and offered to drive her to the Haven once I’m driving again as she’s avoided it because it’s unfamiliar territory. Maureen did it for me, I can pay it forward. Just hope I don’t jump a red light again lol.
I sat and basked in the sun for 10 minutes in the lunch break and spotted this beautiful rose. I couldn’t quite capture the colour but it’s still lovely:
And I came home to this:
So what’s my plan of action now I’m all fired up to move forward? Guess.
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