I’ve never been a great fan of euphemisms. I hate it when women refer to their genitals as their ‘vagina’ (no, that’s the bit inside) and I’ve never understood why people avoid using words like death, dying... ‘passed’ makes me flinch, reminds me of Victorian spiritualism, and I can’t think how it could soften the blow of someone’s death.
I’m beginning to notice euphemisms associated with chemotherapy. I can understand it (no one wants to be scared witless at the prospect of side effects and there are some people who are prone to anticipate the very worst. I may be top of the list here!).
‘You may feel tired and lethargic...’ What they really mean is there’s a strong possibility you will feel either you’ve been knocked over by a lorry and left lying as roadkill, flattened by a steamroller or had your drinks spiked over a period of several days. Nothing prepared me, not even my wildest thinking, for that feeling that your body is not your body. Limbs don’t do as you will them to do, basically because they aren’t your limbs - surely they’ve been replaced by someone else’s? They feel numb, they tingle like a local anaesthetic on a grand scale and the only escape I found was meditation. When you’re in a trance-state, you don’t notice the heavy lightness of your limbs. That is good!
‘You may find your mouth becomes sore...’ Yes, I have. ‘Sore’ doesn’t cover it. I could literally feel and see the lining of my mouth peeling away in strings of slime (a bit like when I use Oral B toothpaste, only the lining isn’t replaced). I have chapped lips for perhaps the first time in my life, again the consequence of a whole layer of skin peeling away, so I’m constantly applying Vaseline (aloe vera of course). My gums feel like they have shrunk and my teeth itch like when I have the worst kind of cold. Chewing can be very painful. Add ulcers around my tongue (which I haven’t experienced for perhaps 30 years) and my mouth right now is in a sorry state. I shall take some ice lollies to the next session of chemotherapy and see if that helps. Meantime, Trina has sent me two tubes of flavour-free fluoride toothpaste. I expect it will be vile but it won’t sting! I got an ultra soft toothbrush especially but I might have to change it for a baby’s brush as my gums are so sore.
‘This treatment can make some foods taste different.’ Try, this treatment destroys your sense of taste and texture so basic foods make you feel totally nauseous. As soon as I find something palatable, like fresh pineapple and lemon/lime drinks, I meet a downside, currently ulcers. Try enjoying that burst of tangy pineapple when your whole mouth feels it’s on fire. Maureen found she favoured spicy foods. My delicate little tummy can’t handle garlic, let alone spices, so the blander the better for me. And the way my stomach has been feeling, despite Lansoprazole, I wouldn’t be at all surprised to find layers inside me, like my stomach lining, being affected in the same way.
Hair loss is inevitable. I’m ok with that (I think). What I wasn’t prepared for was the pain of the process. As a kid, my mother used to tie my hair in rags so I had dinky little ringlets. It was agony by morning. That’s how my scalp feels right now, like I’ve been sleeping with my hair in the wrong direction. Ouch.
The best (?) is the comment that most of these do improve once treatment is stopped. Wtf does that mean?? Have I got another 5 months of this physical misery? What does ‘most’ mean?’ Which ones am I stuck with for life??
On the bright side, I’m getting cured aren’t I, so why am I whingeing!
Monday, 7 January 2019
Sunday, 6 January 2019
19. The Land of Denial
I know ‘denial’ in oneself and in others can be very irritating, isn’t constructive and supposedly holds one back, Well, I got out of my meltdowns and have got through the past few months by frequent recourse to what I nicknamed Land of Denial.
Frequently, I was advised to ‘take it one day at a time.’ Sometimes it was one hour at a time! Surely that’s denial?
I accepted I had breast cancer. I accepted I had to have a radical mastectomy. I accepted I couldn’t avoid chemotherapy. But there’s only so much a mind can deal with, particularly one prone to obsessing about what ifs. So Land of Denial was/is a useful tool in my armoury and a way of controlling my phobic reactions. If it’s psychologically unhealthy, tough. I think I’ve lived enough years to understand what is destructive to my mental wellbeing and what isn’t. When friends asked how I was, I’d blithely reply ‘I’m happy in Denial Land.’
First, I decided I would keep my questions to the minimum and trust the experts. I still don’t know what was meant by “it even came out in your skin.” When I’m better, I’ll ask. It sounds scary and I have enough to scare me already. Though, thinking abut it, if it hadn’t come out in my skin, I’d not be writing this blog; I’d be happily living my life, oblivious to the cancer spreading its way determinedly into my lymphatic system and embedding itself in less reachable places in my body. By the time I found out - maybe two years time when I faced the next mammogram - it would be a terminal case.
Second, I refused to look up anything on the internet. My Google history is untainted by desperate searches for information and what x,y or z mean, let alone prognoses and statistical predictions for a ‘cure.’ The language is alarming enough: aggressive, invasive... If my consultant talks about seeing me in a year’s time for a checkup and my oncologist talks about 10 years on whatever nasty drug it will be, I can happily infer they expect a good outcome. That’s enough for me.
I limit my searches to practicalities - how to deal with cording, what to take to a chemotherapy session, how to prepare psychologically for going bald, what to eat when nothing tastes and, right now, how to deal with a sore mouth and incipient ulcers. After all, there are millions of women out there, and a few men too, who have those answers and are only too happy to help a fellow sufferer along.
Third, I’ve only skim-read Mr B’s letters to my GP. I had (have? I haven’t asked) grade 2 invasive lobular cancers but all margins were good except the axillary cancer... I stopped reading there. With my propensity to catastrophise, a little knowledge is dangerous. I’m leaving it to the experts.
I don’t want to know any more than I know already. Land of Denial enables me to achieve a level of peace of mind that helps me through to each new stage. Right now, I’m not thinking about the next session of chemotherapy. I’m just dealing with what the first session has done to me.
Frequently, I was advised to ‘take it one day at a time.’ Sometimes it was one hour at a time! Surely that’s denial?
I accepted I had breast cancer. I accepted I had to have a radical mastectomy. I accepted I couldn’t avoid chemotherapy. But there’s only so much a mind can deal with, particularly one prone to obsessing about what ifs. So Land of Denial was/is a useful tool in my armoury and a way of controlling my phobic reactions. If it’s psychologically unhealthy, tough. I think I’ve lived enough years to understand what is destructive to my mental wellbeing and what isn’t. When friends asked how I was, I’d blithely reply ‘I’m happy in Denial Land.’
First, I decided I would keep my questions to the minimum and trust the experts. I still don’t know what was meant by “it even came out in your skin.” When I’m better, I’ll ask. It sounds scary and I have enough to scare me already. Though, thinking abut it, if it hadn’t come out in my skin, I’d not be writing this blog; I’d be happily living my life, oblivious to the cancer spreading its way determinedly into my lymphatic system and embedding itself in less reachable places in my body. By the time I found out - maybe two years time when I faced the next mammogram - it would be a terminal case.
Second, I refused to look up anything on the internet. My Google history is untainted by desperate searches for information and what x,y or z mean, let alone prognoses and statistical predictions for a ‘cure.’ The language is alarming enough: aggressive, invasive... If my consultant talks about seeing me in a year’s time for a checkup and my oncologist talks about 10 years on whatever nasty drug it will be, I can happily infer they expect a good outcome. That’s enough for me.
I limit my searches to practicalities - how to deal with cording, what to take to a chemotherapy session, how to prepare psychologically for going bald, what to eat when nothing tastes and, right now, how to deal with a sore mouth and incipient ulcers. After all, there are millions of women out there, and a few men too, who have those answers and are only too happy to help a fellow sufferer along.
Third, I’ve only skim-read Mr B’s letters to my GP. I had (have? I haven’t asked) grade 2 invasive lobular cancers but all margins were good except the axillary cancer... I stopped reading there. With my propensity to catastrophise, a little knowledge is dangerous. I’m leaving it to the experts.
I don’t want to know any more than I know already. Land of Denial enables me to achieve a level of peace of mind that helps me through to each new stage. Right now, I’m not thinking about the next session of chemotherapy. I’m just dealing with what the first session has done to me.
Saturday, 5 January 2019
18. Petty little things mean a lot
Completely at random:
Meds
1. Putting a tablet in my mouth with food and forgetting to swallow it. Ugh. Now I know why they are coated.
2. It’s surprising how I can hold a tablet in my hand and, 5 minutes later, it’s not there. Did I take it? Is it hiding in the carpet or the duvet? I have no idea.
3. The obvious solution is infantilising and I refuse to be ‘supervised!’
Food
1. Losing my sense of taste and texture (hopefully temporarily) so I can’t even swallow my staple banana is disgusting.
2. Fresh pineapple is GOOD. Juicy, flavoursome and nutritious. Preparing fresh pineapple when you’re too weak to wield a knife is impossible. Ready packs for now.
3. High-calorie foods and nutritional supplements cause indigestion. The high-calorie ‘shots’ are undrinkable! The dessert pots are ok, preferably chocolate.
4. There is no comforting a Cadbury’s addict who’s lost her taste for chocolate.
Fluids
1. It’s bloody hard sourcing thin drinking straws now we’re more eco-aware. A straw is not simply a straw, it’s also a vast air-vent to someone with problems swallowing. The narrower the better right now.
2. Fruit jellies are a way of getting extra ‘fluid’ but short on calories. Calorie-deficient food to me is a waste of time and effort. Give me CALORIES.
3. Even water can taste foul. But then, so can tea, milk, anything really.
4. It’s surprisingly hard to increase your fluid intake while you have to drink through a straw.
Body
1. Scars tighten up if you don’t treat them kindly. They need exercise, watering and feeding. And a good massage. Massage HURTS.2. Cording is very painful, not inevitable but hard to stop once it’s started. Keep up the massage and stop being a wimp!
3. Constipation is a pain. Suppositories apparently are an infection risk and I won’t swallow a laxative (another irrational fear) so I’m downing chia and linseed seeds like nobody’s business.
3a. What a peculiar expression, ‘like nobody’s business.’ It doesn’t bear scrutiny - but nor does constipation!
4. It’s actually quite hard to appreciate and want to look after a body that’s betrayed you by getting cancer and is expressing itself with all sorts of real and imaginary side effects.
5. A shower seat is not a luxury, nor is it lazy. It’s been one of my best purchases so far, but isn’t so lovely as my maroon sheepskin scarf (I’m pretending I haven’t noticed it’s been reduced by £20 since I bought it).
1. Years of a strict (and ridiculously expensive) Environ skincare regime have gone to pot. The products are far too strong. My face is sore, my skin is peeling and I’ve got facial eczema. Over to Simple for the duration.
2. Layers peel off inside my mouth. It’s only a little sore so far but this dentalphobe is concerned about gum health. Toothpaste stings like hell. I have replaced the electric brush with an extra soft manual brush. Do I now resort to children’s toothpaste??
3. A spot can be permanent. After my op, I developed a huge acne spot on the edge of my jaw (I can’t see it but others can). Almost 3 months later, it’s still sitting there defiantly.
4. My scalp is sore. There’s no new hair growing but none lost - yet. I’m quite excited at the idea of a buzz-cut. Not sure I’ll feel the same about being bald though. A bridge to cross soon, apparently.
5. Why didn’t I opt for the cold-cap? It’s not guaranteed successful, it hurts like hell according to many users AND it adds a couple of hours to treatment time.
People
1. People care. It’s heart-warming. People want to know how I am. Result: every bloody conversation includes cancer and treatment. It’s getting boring because friends only have (and probably need) the one conversation; I have it with each one of them.
Thursday, 3 January 2019
17. We are all different.
Instead of buying cards and presents, I got Dennis and me a journal each. They have Roll On Summer embossed on the front. I don’t know if Den is using his. It’s not in his nature, apart from meticulous details of each record acquired in whatever format since somewhere in the 60s. But he’s surprised me quite a bit now and then since September. If he has, there will be nothing about himself; probably just observations about me, my symptoms and my behaviour! I haven’t shown myself in the best light so far. I’m simply not a warrior!
My journal has grid pages and I try to keep a meticulous record on one side of medication, self-care, fluid intake and food intake. The right page is comments on how I feel, any changes (both physical and mental) and simple observations. I’ve maintained it every day, although recently there have been a few simple ‘ughs’ and only yesterday is virtually blank.
Everyone’s experience is different. I had an easy first five days. Steroids, of course. I ate better than normally, drank adequate fluids to maintain my 1.5L target, took the occasional cyclizine just in case I felt nauseous (I didn’t but I wasn’t going to risk it) and gained 6lb. That was a bit disconcerting considering my Christmas Day sales binge to re-equip a skinny person wardrobe but no worries - I soon lost it again once the steroid tablets ran out. Oh, this was going to be a doddle. How ridiculous and destructive to my confidence all that catastrophising had been.
I’d dreaded the steroids, having experienced a too-rapid withdrawal a couple of years ago following an inner ear problem. Now I just wanted them back. First the tingling began, then the heaviness so I could barely move. I felt like this was not my body. Going to have a pee was a major expedition. Constipation set in. I could do very little but feel utterly miserable from Day 6 onwards, tune into YouTube self-hypnosis (thanks again Michael) and ride it out. The last few days, I’ve not met my fluid target so I’m dehydrated; I’ve lost my appetite, so I’m weak and pathetic; and worst of all, I’ve felt anxious, resorting to diazepam when I really don’t want to.
I postponed my hair loss appointment as I could never have managed it. In the end, I rang the hospital for advice about the bone scan, which was scheduled for today. I didn’t fancy being radioactive anyway but physically I was pretty sure I couldn’t manage the trip. T answered the phone, to my surprise, asked pertinent questions, provided reassurance and clear advice. It was time to put some effort into all this (my words, not hers), stop lolling about feeling sorry for myself and help my body along (her words). She advised that I ate a snack (something that will fit in the palm of my hand) every two hours and drink, drink, drink. Add some movement, a change of scenery and, if moving around exhausts me, don’t return to the invalid bed.
So here I am, still in my pjs but not in bed, trying to use my brain again, eating every two hours, sipping energy drinks and suspecting that I hit the bottom of the trough yesterday and things may start to look up. It’s only Day 11 of a 21-day cycle after all. Roll On Summer.
16. My first experience of chemotherapy
Ok, I cheated. Nevertheless, all things considered and every other cliche along those lines, I’m proud of myself and Christmas Eve.
Woke up and took half a lorazepam. I hate taking new tablets. I can get a side effect just entering a pharmacy! Nothing seemed to happen. I’m used to diazepam and its gently mellowing effect. I’d packed my bag for every eventuality - distraction, constructive activity, panic management...I left little to chance. Of course it weighed a ton in addition to my ever-weighty handbag.
Maureen picked me up, concerned about rush hour traffic and more roadworks and we were there, parked and waiting, by 8.40. I took another half lorazepam. More people started arriving, almost all bright-eyed and bushy-tailed, which should have been reassuring but made me feel a bit resentful. A nurse came to collect me and took me into suite A where my name was on the whiteboard, along with my treatment details - and surrounded by other chemotherapy patients. Aargh! All I had to say was ‘I thought I was going to be treated in the overflow room’ and off we went, no questions asked.
First I took my remaining lorazepam. Still nothing. No gentle buzz, no reassuring calm. Nothing. It took a while for it to register that ‘nothing’ was nothing short of a miracle. I sat and I chatted with the nurse who injected vast syringes of steroids, anti-nausea drugs and eventually the red poison of EC treatment. I chatted with Maureen. Someone came round with a trolley full of Christmas refreshments and I ate Pringles and drank apple juice. Who was this woman?
The whole thing went quite quickly and smoothly since my veins for once decided to cooperate instead of dancing about. Then it was over. I even asked if I could stay till the drip was empty as this was easy hydration! Then, out came the cannula from my ‘perfect vein’ and I just had to wait for the pharmacist while Maureen popped off for a coffee. It was a long wait. It strikes me as odd that the pharmacists in oncology had to go down to the Boots franchise to get two measly lorazepams but that’s how they are organised.
I was fine when I got home, later had a benzo-nap and stayed resting for the remainder of the day. No bruising, no soreness, no nausea (and I had enough anti-sickness pills for a dozen patients), red pee. Otherwise, nothing. I realised that, perhaps for the first time in decades, I felt what I believe is ‘normal.’ It felt strange and it felt good. But I had no idea what to expect from now on. So far, I’d catastrophised myself into ill-health and been proved wrong. I’d just have to wait and see, first if the anti-nausea treatments worked, then if I’d get my steroid tummy, then if I’d get steroid withdrawal which has laid me flat in the past. More than anything though, I’m embarrassed to say I waited for the nausea to come.
Woke up and took half a lorazepam. I hate taking new tablets. I can get a side effect just entering a pharmacy! Nothing seemed to happen. I’m used to diazepam and its gently mellowing effect. I’d packed my bag for every eventuality - distraction, constructive activity, panic management...I left little to chance. Of course it weighed a ton in addition to my ever-weighty handbag.
Maureen picked me up, concerned about rush hour traffic and more roadworks and we were there, parked and waiting, by 8.40. I took another half lorazepam. More people started arriving, almost all bright-eyed and bushy-tailed, which should have been reassuring but made me feel a bit resentful. A nurse came to collect me and took me into suite A where my name was on the whiteboard, along with my treatment details - and surrounded by other chemotherapy patients. Aargh! All I had to say was ‘I thought I was going to be treated in the overflow room’ and off we went, no questions asked.
First I took my remaining lorazepam. Still nothing. No gentle buzz, no reassuring calm. Nothing. It took a while for it to register that ‘nothing’ was nothing short of a miracle. I sat and I chatted with the nurse who injected vast syringes of steroids, anti-nausea drugs and eventually the red poison of EC treatment. I chatted with Maureen. Someone came round with a trolley full of Christmas refreshments and I ate Pringles and drank apple juice. Who was this woman?
The whole thing went quite quickly and smoothly since my veins for once decided to cooperate instead of dancing about. Then it was over. I even asked if I could stay till the drip was empty as this was easy hydration! Then, out came the cannula from my ‘perfect vein’ and I just had to wait for the pharmacist while Maureen popped off for a coffee. It was a long wait. It strikes me as odd that the pharmacists in oncology had to go down to the Boots franchise to get two measly lorazepams but that’s how they are organised.
I was fine when I got home, later had a benzo-nap and stayed resting for the remainder of the day. No bruising, no soreness, no nausea (and I had enough anti-sickness pills for a dozen patients), red pee. Otherwise, nothing. I realised that, perhaps for the first time in decades, I felt what I believe is ‘normal.’ It felt strange and it felt good. But I had no idea what to expect from now on. So far, I’d catastrophised myself into ill-health and been proved wrong. I’d just have to wait and see, first if the anti-nausea treatments worked, then if I’d get my steroid tummy, then if I’d get steroid withdrawal which has laid me flat in the past. More than anything though, I’m embarrassed to say I waited for the nausea to come.
15. Almost there
The next couple of weeks were tense. I heard nothing from the hospital about an appointment and, for both of us, the clock was ticking. I think it was a little harder, knowing now that I still had cancer cells in my breast muscle and that the delay between surgery and chemotherapy was past the optimum, well past. I found myself avoiding the essential massage of my near-dead arm for fear I might be massaging those cancer cells into action. Let them rest undisturbed.
I got an appointment to see Dr K at his clinic and he talked me through all the treatment regime and made sure I understood all the ramifications (ie side effects) before I signed myself over to the ministrations of the oncology team. That done, all I needed was a date. More waiting. I know I say it’s just a disease and I know I truly believe my challenge is less the cancer, more the treatment, but waiting was horrid. Eventually I rang and was told my first chemotherapy would be Christmas Eve. Even I could see the funny side, me laid out fighting off nausea and panic while all my friends celebrated with their families and got pleasantly pissed and stuffed. Well, only some of them - there’s a huge range from the abstemious to the raucous!
I went on my own for the preliminary appointment with T, one of the specialist nurses in charge of the breastcare unit. Den wasn’t happy about it but it was important to me to be seen not as the quivering obsessive at least once. Everyone accepted I had problems, as many other patients do, but I felt some of them oversimplified me, thinking I was scared of being around people. No, I was scared of myself as ever, other people only clouding the picture when (notice, not IF) panic hit me.
The phlebotomist left me with a giant bruise; the nurse was astounded at how good my blood pressure was (I forgot to tell her I’d taken a betablocker!) though she agreed my weight was way too low. T herself talked me through the whole process, showed me around, took me to make a hair loss appointment and generally did her best to reassure me. Dr K had left a prescription for lorazepam for use on treatment day. It was fine.
Well, it would have been fine for anyone without my obsession with vomiting. Nothing could convince me I could manage this without a major meltdown. I felt a bit of a nuisance, a bit hysterical maybe, and certainly obsessed with what I was sure was to come. Nothing reassured me. Such is the power of a phobia.
I got an appointment to see Dr K at his clinic and he talked me through all the treatment regime and made sure I understood all the ramifications (ie side effects) before I signed myself over to the ministrations of the oncology team. That done, all I needed was a date. More waiting. I know I say it’s just a disease and I know I truly believe my challenge is less the cancer, more the treatment, but waiting was horrid. Eventually I rang and was told my first chemotherapy would be Christmas Eve. Even I could see the funny side, me laid out fighting off nausea and panic while all my friends celebrated with their families and got pleasantly pissed and stuffed. Well, only some of them - there’s a huge range from the abstemious to the raucous!
I went on my own for the preliminary appointment with T, one of the specialist nurses in charge of the breastcare unit. Den wasn’t happy about it but it was important to me to be seen not as the quivering obsessive at least once. Everyone accepted I had problems, as many other patients do, but I felt some of them oversimplified me, thinking I was scared of being around people. No, I was scared of myself as ever, other people only clouding the picture when (notice, not IF) panic hit me.
The phlebotomist left me with a giant bruise; the nurse was astounded at how good my blood pressure was (I forgot to tell her I’d taken a betablocker!) though she agreed my weight was way too low. T herself talked me through the whole process, showed me around, took me to make a hair loss appointment and generally did her best to reassure me. Dr K had left a prescription for lorazepam for use on treatment day. It was fine.
Well, it would have been fine for anyone without my obsession with vomiting. Nothing could convince me I could manage this without a major meltdown. I felt a bit of a nuisance, a bit hysterical maybe, and certainly obsessed with what I was sure was to come. Nothing reassured me. Such is the power of a phobia.
Tuesday, 1 January 2019
14. Now where was I?
I’ve joined the discussion forum at Breastcare Cancer UK. Looks like it might be useful. I posted my first enquiry and am waiting for sage advice to pour in as the last couple of days have been shit and I dread losing more weight through not eating much.
https://forum.breastcancercare.org.uk/t5/Chemotherapy/Questions-about-taste-appetite-etc/td-p/1261438
Two helpful replies and one telling me that she’d experienced none of what I shared. Well, lucky you. I’d have preferred not to hear that!
Oh, and I’ve postponed my hair loss appointment. My chauffeur has a stinker of a cold but, more than anything, I don’t think I’ll have enough energy. I have two days now to pick up, get some strength and face the bone scan. I definitely have learnt a lesson: I’ve looked up what it involves and I’m not catastrophising again. It’s such a waste of energy.
Meeting the teams
I got a call within a couple of days of the oncology consultation. True to his word, Dr K had arranged for the breastcare nurse at the private hospital to show me round. Anne took me as driving was still awkward. I’ve only just invested in my first automatic, having regretfully waved bye-bye to my coupe on the basis that the panache of a Thelma or Louise was less helpful to me than no clutch causing searing foot pain. Yes, I could just about have managed but would I be safe on the roads if I couldn’t yank on the handbrake?
The nurse was delayed with a patient so I talked with V, the oncology unit manager. Having almost decided I couldn’t risk losing all our savings (a tiny risk, but still a risk), I felt a bit guilty but V was aware I was undecided. She did nothing to persuade me to use their services, just wanted to know all about me. So I talked and talked...and talked some more. V made me feel like everything I said, everything I feared mattered to her. As far as it’s possible to feel good in an oncology unit, that’s how she made me feel. Of course, I left even less decided.
A week later, I heard from C who works at St James’s. I honestly hadn’t expected this level of support. We arranged an early evening visit on 21 November when things were quiet and C said she’d also like me to visit the actual clinic day a few days after. Maureen took me as she knows the place well and was able to navigate the multi-storey and take the shortcuts. I think Den would have liked to come with me but I was so glad he hadn’t. Bexley Wing is for every kind of cancer and I glimpsed a couple of patients who almost broke my heart: a man wearing a false face and a woman who’d lost her legs and was really struggling to get out of the place.
C is a Macmillan breastcare nurse. She, like V, made me feel that every little worry, every little detail mattered. I’d gone armed with a raft of questions, composed with my psychotherapist who’s been brilliant and proactive in her support. The answers were all positives: patient-centred treatment definitely. The scale of Bexley felt overwhelming, even when almost empty. It reminded me of a factory system, room after room of comfy chairs and drips. Where were the vomiters? Why did the patients look relaxed, if resigned?
C introduced me to various nursing staff who all gave me time and attention and had a reassuring suggestion to make about treatment. One nurse I mentally called Pixie went so far as to identify the overflow room as a place for my first treatments while I grew used to it and took us along to see it. Perfect. One huge fear I had was that I’d have a panic attack and not be able to escape. The thought of others witnessing my panic and embarrassment horrified me. I left, certain that I’d transfer to the NHS.
The second visit I managed to drive myself and took Den along. He admitted it was depressing but C reassured him, with her bubbly personality and genuine concern that they make my experience as bearable as possible in the circumstances. My decision was sealed when C explained to the nurse shadowing her that what we were talking about wasn’t just worry or anxiety, it was panic disorder that was completely debilitating if not addressed. That was all I needed. She got it. Obviously Dr K got it. I committed myself to being treated at the Bexley Wing of St James’s Hospital.
Then the long wait for transfer began.
https://forum.breastcancercare.org.uk/t5/Chemotherapy/Questions-about-taste-appetite-etc/td-p/1261438
Two helpful replies and one telling me that she’d experienced none of what I shared. Well, lucky you. I’d have preferred not to hear that!
Oh, and I’ve postponed my hair loss appointment. My chauffeur has a stinker of a cold but, more than anything, I don’t think I’ll have enough energy. I have two days now to pick up, get some strength and face the bone scan. I definitely have learnt a lesson: I’ve looked up what it involves and I’m not catastrophising again. It’s such a waste of energy.
Meeting the teams
I got a call within a couple of days of the oncology consultation. True to his word, Dr K had arranged for the breastcare nurse at the private hospital to show me round. Anne took me as driving was still awkward. I’ve only just invested in my first automatic, having regretfully waved bye-bye to my coupe on the basis that the panache of a Thelma or Louise was less helpful to me than no clutch causing searing foot pain. Yes, I could just about have managed but would I be safe on the roads if I couldn’t yank on the handbrake?
The nurse was delayed with a patient so I talked with V, the oncology unit manager. Having almost decided I couldn’t risk losing all our savings (a tiny risk, but still a risk), I felt a bit guilty but V was aware I was undecided. She did nothing to persuade me to use their services, just wanted to know all about me. So I talked and talked...and talked some more. V made me feel like everything I said, everything I feared mattered to her. As far as it’s possible to feel good in an oncology unit, that’s how she made me feel. Of course, I left even less decided.
A week later, I heard from C who works at St James’s. I honestly hadn’t expected this level of support. We arranged an early evening visit on 21 November when things were quiet and C said she’d also like me to visit the actual clinic day a few days after. Maureen took me as she knows the place well and was able to navigate the multi-storey and take the shortcuts. I think Den would have liked to come with me but I was so glad he hadn’t. Bexley Wing is for every kind of cancer and I glimpsed a couple of patients who almost broke my heart: a man wearing a false face and a woman who’d lost her legs and was really struggling to get out of the place.
C is a Macmillan breastcare nurse. She, like V, made me feel that every little worry, every little detail mattered. I’d gone armed with a raft of questions, composed with my psychotherapist who’s been brilliant and proactive in her support. The answers were all positives: patient-centred treatment definitely. The scale of Bexley felt overwhelming, even when almost empty. It reminded me of a factory system, room after room of comfy chairs and drips. Where were the vomiters? Why did the patients look relaxed, if resigned?
C introduced me to various nursing staff who all gave me time and attention and had a reassuring suggestion to make about treatment. One nurse I mentally called Pixie went so far as to identify the overflow room as a place for my first treatments while I grew used to it and took us along to see it. Perfect. One huge fear I had was that I’d have a panic attack and not be able to escape. The thought of others witnessing my panic and embarrassment horrified me. I left, certain that I’d transfer to the NHS.
The second visit I managed to drive myself and took Den along. He admitted it was depressing but C reassured him, with her bubbly personality and genuine concern that they make my experience as bearable as possible in the circumstances. My decision was sealed when C explained to the nurse shadowing her that what we were talking about wasn’t just worry or anxiety, it was panic disorder that was completely debilitating if not addressed. That was all I needed. She got it. Obviously Dr K got it. I committed myself to being treated at the Bexley Wing of St James’s Hospital.
Then the long wait for transfer began.
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