Ok, this is becoming my diversion from a horrible slump following the end of the hated (but please, I want you back) steroids. I will get back on narrative track tomorrow but I’m going to indulge myself a bit.
I’m a lazy cow. I always have preferred to pamper myself and loll about doing nothing or just exercising my brain (not really accessible right now) with puzzles, books, writing, online learning... I waste money on gym membership and often just did one class a week, maybe supplemented by a bit of a gym session if I found no excuse. I have arthritic big toe joints which make walking painful - an excuse. I have a husband who enjoys housework while I don’t believe I have a domestic gene in my body - so I take the pragmatic approach and leave it all to him now. I enjoy being surrounded by mess. I gain comfort from it when my head is such a mess itself - a kind of balancing act that works. For me. Dennis hates it - he’d live in Japanese minimalism if he could, though what he would do with his record collection remains a mystery as it spreads like triffids through our home.
Fundamentally, I’m spoilt, indulged and bloody lucky. Don’t think I don’t know it or appreciate it. However, THIS IS NOT GOOD FOR ME RIGHT NOW.
I’ve tried searching online for vague answers - how long does this trough last? There’s no consensus. We’re all different and the positive posts about staying active, going for walks, keeping busy, just reinforce the message on my mug: ‘Housework won’t kill you but why take the risk?’ I can barely pick up a mug, let alone a duster.
So I’m asking myself what I can do to be more positive. I feel like I imagine a heavy dose of rohypnol might make me feel. My limbs aren’t mine, they don’t even feel anything except a weird tingling. I’m floppy and lethargic and my appetite has gone. How can you have appetite when every taste and texture has changed to slime in your mouth? But I can’t stay like this. I’ve got three hospital appointments straight in the new year!
I’ve forced myself into the shower and feel fresh and clean. Hair check: still good. I’m bursting for a pee but can’t be arsed to get out of my invalid bed and I am ready to burst with the discomfort of constipation. It’s been hard work maintaining my low target of 1.5L of fluid and I’ve kind of lapsed the last couple of days (yes, more stupidity) but drinking through a straw while the swallowing problem sorts itself out is long, slow and unrewarding. Drink plenty of fluids, they say. Yes, but how please? It takes me 45 minutes to down 300ml of tea, cold by the end, and my air intake has soared.
I need a good talking to. That has to come from me as I don’t take well to being told what I should do - another self-indulgence. It’s coming up for New Year, like Christmas, a non-event in this household. I learnt long ago that resolutions don’t work (I’ve kept ONE in my whole life - I haven’t touched a copy of the Daily Mail - guilty annoyance at the gym - in two years. Go Jan!) so it looks like I need some positive self-talk. Maybe some EFT would energise me. Maybe some more of blessed Michael’s recordings? What I do know is that, by tomorrow, I want to be up and moving about, not wallowing in self-pity, brain dulled, scared and beyond pessimistic. Yes, to be frank, I am scared. Just a little bit... I’m scared I’m slipping into being an invalid and my dear husband, trying his best, knows better than to advise me.
Maybe I should post on the Breast Cancer Care forum but I know that advice I’ll get - stuff that doesn’t come naturally to me. OK, decision time. Up for a pee, finish my cold cuppa and then do my arm exercises to exercise what my lovely Trina calls my noob. If I have any remaining energy, let’s see if I can remember a simple tai chi form. I have a goal!
Sunday 30 December 2018
12. Keep focused Jan
Today’s extra hard. It would be my mum’s 92nd birthday. She died two years back while we were planning a grand Tait-style 90th birthday do, magician, dancing, the lot. Everything I hate and she adored. I still miss picking up the phone, listening to her, moaning to her, sorting her out. But right now I actually NEED her. Of course, I’m glad she’s not here - she’d be worrying herself sick, feel helpless and be blaming herself for passing on the breast cancer gene (if that’s what’s happened - who knows?).
But I feel like a helpless kid and I feel cheated of the comfort of my mum, with all her imperfections and all our appalling similarities. I wonder if adults ever get over that deep-rooted need to be parented at times... This is the only pic I’ve got access to on the iPad: Australia, with her eldest great granddaughter Brittany who must be 21 by now. So I guess Mum was about 80?
I’m in my first chemo-trough and it’s exhausting and debilitating but I don’t want a pity-party so let’s stay focused on the blog.
Oncology. I’ve always thought it a hideous word. It’s not its implications. It just sounds ugly. I love how words sound and how they can express so much in their sound. ‘Sparkle,’ ‘giggle,’ ‘glorious,’ all good words. ‘Boring’ says all it needs to say and more. ‘Oncology?’ Just ugly.
Kiera drove us to an evening appointment at the local private hospital and Dennis and I met Dr K, my ‘consultant oncologist.’ By now I was used to the pattern of deteriorating news about this bloody cancer so I was realistic. I stayed out of what I was calling Land of Denial and acknowledged there was the possibility the news could get worse. All I wanted to know was if it had spread but Dr K wanted to get to know me and my experience first so I didn’t ask outright. Chicken.
After going through everything and explaining my fears and phobias and how chemotherapy was anathema to me, Dr K assured me the CT scan did not show any sign that the cancer had spread elsewhere. My eyes welled up with tears of relief but, as I thanked him for that news, I heard my perceptive husband say ‘But there’s a but.’ Yes, of course there was: I have some enlarged lymph vessels in my breast muscle which might well be breast cancer - still. He wanted the throw everything at it with chemotherapy and the full works. I reverted to Land of Denial - OK, it’ll be manageable, it has to be.
He talked us through the treatment regime he recommended and asked an odd question: what did I have against St James’s Hospital? I explained about control, easier access, all the little impracticalitities removed, leaving peace of mind for me. He pointed out that the Bexley Wing was a centre of excellence, everything I needed was there and asked me to consider it. I was stunned and thrown. Surely he would be losing a private patient? I hadn’t expected this.
We talked about the cost of private treatment (manageable so long as nothing went wrong) and he suggested he arrange for me to look round the private facilities and meet the team and asked if I would agree to do the same for the Bexley Wing. I went home puzzled but thoughtful. IF something were to go wrong in my chemotherapy, I could end up with all my life savings and retirement funds gone. That was ok, but, worst case scenario, all Dennis’s too? Dr K said he’d signed off at least one private insurance claim close to half a million.
Den’s view was I should stick with my plan. We could always sell the house but my peace of mind was paramount. My view was more pragmatic. I didn’t organise work experience all those years and visit those dire, depressing care homes and learn nothing. The risk of losing everything to pander to my bloody mental health wasn’t worth it. So I retreated into Land of Denial and waited for inspiration. It started with Kiera’s reaction. She gave me a hug and said ‘It hasn’t spread. That’s brilliant. Focus on that.’ She has the fortunate knack of seeing the bright side, considering she’s almost as cynical as I am! I need that.
11. The Haven
Leeds is fortunate to have a branch of Breast Cancer Haven, a charity dedicated to supporting people with breast cancer and their families. It’s not easily accessible, tucked away in the less salubrious south of the city, approached by a nightmare of a one-way system and escaped from via the city loop. One wrong lane and you’re scuppered.
Maureen collected Dennis and me and eventually we got there, delayed by roadworks and a bit of confused navigating. I’m finding it interesting being driven by others, observing how characteristic or uncharacteristic their driving is. In this case, calm Maureen was uncharacteristically fraught. It was the build-up to Christmas; Leeds traffic was a nightmare. She kept reminding herself to stay in the left lanes all the way.
The Haven is a pleasant, airy and comfy place and I can imagine it provides a calm and supportive environment. Dennis sat and chatted with Maureen while I had a long interview with E, the manager, who seemed to decide for me what initial sessions would suit my needs best. Of course, all I could focus on was the appalling fact that I had to have chemotherapy and the risk of vomiting! Obsession is frustrating. She suggested I had a hypnotherapy session (‘This is nothing like what you’ve had before’), a session with the medical herbalist and a session with a nutritionist. I felt railroaded rather than comforted but had to trust her judgment.
So far, I’ve had two of those sessions. Hypnotherapy was ok but really nothing I couldn’t have done on my own in a far more comfortable chair. The medical herbalist was supportive, unable to provide much because of the swallowing problem, but full of advice. She provided me with a glorious spray that could take me to a positive place when I needed it, and a vile concoction of St John’s Wort and comfrey in a massage oil which has proved a boon in alleviating the burning sensation in my arm and elbow. I pong a bit but needs must...
I was a bit taken aback to be asked why I was having chemotherapy when it caused so much terror. I hadn’t thought about that. I was having it because the experts believed it was necessary, simple as that. I wondered if anyone ever challenged their treatment and whether that could be a risky decision. I stuck with my choice to go ahead: it may be ‘just a disease’ but even I know it can change to more than that if you don’t follow advice.
I’m ambivalent about whether The Haven is for me. Each time I visit, I get a sense of gentle comfort, coupled with a degree of unease. There is just too much ‘breast cancer’ there for me. I don’t want to be Janet with breast cancer. I want to stay Jan, who just happens to be dealing with some crap right now. It’s difficult. I’ve been known as Jan for decades but I’ve insisted on being Janet through the whole medical process. Breast cancer thus is held at a distance, happening to Janet while Jan remains less affected. Is that some dissociation at work? It’s certainly helped.
https://www.breastcancerhaven.org.uk/the-yorkshire-haven
Maureen collected Dennis and me and eventually we got there, delayed by roadworks and a bit of confused navigating. I’m finding it interesting being driven by others, observing how characteristic or uncharacteristic their driving is. In this case, calm Maureen was uncharacteristically fraught. It was the build-up to Christmas; Leeds traffic was a nightmare. She kept reminding herself to stay in the left lanes all the way.
The Haven is a pleasant, airy and comfy place and I can imagine it provides a calm and supportive environment. Dennis sat and chatted with Maureen while I had a long interview with E, the manager, who seemed to decide for me what initial sessions would suit my needs best. Of course, all I could focus on was the appalling fact that I had to have chemotherapy and the risk of vomiting! Obsession is frustrating. She suggested I had a hypnotherapy session (‘This is nothing like what you’ve had before’), a session with the medical herbalist and a session with a nutritionist. I felt railroaded rather than comforted but had to trust her judgment.
So far, I’ve had two of those sessions. Hypnotherapy was ok but really nothing I couldn’t have done on my own in a far more comfortable chair. The medical herbalist was supportive, unable to provide much because of the swallowing problem, but full of advice. She provided me with a glorious spray that could take me to a positive place when I needed it, and a vile concoction of St John’s Wort and comfrey in a massage oil which has proved a boon in alleviating the burning sensation in my arm and elbow. I pong a bit but needs must...
I was a bit taken aback to be asked why I was having chemotherapy when it caused so much terror. I hadn’t thought about that. I was having it because the experts believed it was necessary, simple as that. I wondered if anyone ever challenged their treatment and whether that could be a risky decision. I stuck with my choice to go ahead: it may be ‘just a disease’ but even I know it can change to more than that if you don’t follow advice.
I’m ambivalent about whether The Haven is for me. Each time I visit, I get a sense of gentle comfort, coupled with a degree of unease. There is just too much ‘breast cancer’ there for me. I don’t want to be Janet with breast cancer. I want to stay Jan, who just happens to be dealing with some crap right now. It’s difficult. I’ve been known as Jan for decades but I’ve insisted on being Janet through the whole medical process. Breast cancer thus is held at a distance, happening to Janet while Jan remains less affected. Is that some dissociation at work? It’s certainly helped.
Saturday 29 December 2018
10. Friends
Phobics need control. I’m a bit excessive, having had a lifetime’s practice. If I’m truly honest, I find friendship difficult, never feeling I can give back what I take and therefore feeling a fraud. Most of the time, I genuinely feel I don’t really belong, that I’m being tolerated and don’t much matter to people. I feel I’m unreliable, too inflexible and too self-focused. Blimey, that’s a confession. Maybe I’m missing my psychotherapy a bit.
Now I think differently. I have been amazed and stunned and overwhelmed by the consideration and support I’ve received from even the most distant of friends. Cards offering careful or clumsy comfort, apologising for the absence of comfort, flowers, plants flew through the house but two things struck me hardest: people wanted to help me and people wanted to respect my wishes.
It’s been truly life-enhancing for someone of my age to suddenly realise that friendship doesn’t have rules. I coped initially with my trauma by keeping people at bay. Gym membership suspended meant no tai chi classes and no work outs (a risible term for a cursory session of stretches and a few weights machines). I couldn’t get to Book Group and didn’t want to go anyway. I wanted no visitors, just made the occasional phone call and quite a few texts and emails. I saw the people I needed to see (sadly, in a chauffeuring role only) and feared I was taking advantage of people.
Yet the offers were repeated. Offers came from people I knew only a little and from people I barely saw but knew from way back. Margaret, a former colleague when I was teaching, drove me to see my psychiatrist (unfortunate necessity for the prescription I require). Marilyn and Clive, Anne, Kiera, Joyce, Maureen, always there to drive me to appointments when I couldn’t yet drive myself. No questions, no complaints, just complete acceptance and kindness. I have emails from tai chi and book group members asking to be added to my list of drivers. I’m completely stunned by people’s kindness. I’m learning a lesson about life and humanity that I missed, holed up in my shell.
Here I must write about another Maureen. Tai chi Maureen. My second rock. She’d been present at our light-hearted post-tai chi briefings on my initial progress through the early part of the experience. I remember her going through the whole process herself six years ago - I think that’s how we met. She simply offered her support, said she’d take me to my first chemotherapy and introduced me to The Haven. She visited me at home and talked about her experience, has kept me reassured in what are not the easiest of circumstances as I’m not responsive to reassurance at the best of times. And she provided support for Den (who doesn’t get much consideration in all this, does he?). I’m pretty certain that, without her calm, pragmatic reassurance, I’d have broken.
9. Facing reality
I skipped ahead a bit. This is one bit I really found hard to take. Den came with me to get the post-surgery results. Marilyn and her husband provided the chauffeuring service yet again - I can’t thank them enough (and all my other friends who rallied round with offers of lifts. There are advantages to being the only driver in the household when you’re a control-freak like me - and the world is emphatically a safer place without my husband on the roads - but not being able to drive when you’re a phobic is a bind).
This time, I greeted the results in stunned silence. No quiet expletives. What had happened to the reassuring ‘I don’t think there’s much to worry about?’ I just stared at the floor, hearing a gentle voice telling me the results weren’t good: the two malignant tumours and the skin eruptions were now supplemented by 19 of the 21 lymph nodes removed in the axillary clearance being infected. Now I would need a CT scan to see if the cancer had spread and chemotherapy would be essential within 4 to 6 weeks. Did I still want to remain in private treatment? I couldn’t think beyond the word ‘chemotherapy.’ Chemotherapy = vomiting. My obsession. To say I catastrophised is an understatement.
I still considered breast cancer ‘just a disease,’ and wasn’t much fazed by it. It was the prospects of the treatment that well-nigh broke my spirit. I truly felt I was now facing something unachievable. I said I’d like to go privately, anxious of the prospect of getting tied up in NHS bureaucracy, delays and systems and needing to feel I still had a modicum of choice and control. I meekly thanked Mr B and the nurses and was driven home in a haze of misery. I gave no thought to Dennis and how painful this was for him. I had my own feelings to cope with.
My referral was to to the original hospital I’d planned to attend, closer to home. First came the summons for the CT scan. For the first time, I turned to the internet, having no idea what one involved. It seemed manageable for someone with claustrophobia. Then came the letter and the catastrophising. I could barely swallow fluids and was badly dehydrated (by now my GP had a nutritionist trying to fatten me up, a steady flow of community nurses checking my healing wounds and advising me on fluids - no one oddly had the answer to what was obviously a psychosomatic problem with fluids) and I was being told I’d have to drink 2 litres of water AND be injected with dye. Yep, another phobia: I am terrified of unknown things going into my body (don’t bother wondering).
Looking back, that period of waiting was hell. I rang repeatedly to speak to the radiologist but he proved elusive. What an anticlimax when I managed to speak to him. Nothing threw him as I explained all my problems. He simply said he scanned people straight from accidents - he just adapted. It wasn’t the end of the world if I couldn’t drink the water. My mind can be (no, it simply is) my worst enemy. The scan was quick and a doddle because he explained carefully what I would experience physically as the dye was injected. Had he not, I’d have gone into panic and probably knocked myself unconscious as the first rush of heat I felt was in my throat and that should have signalled vomiting. It lasted a few seconds and rushed on to my bladder. No danger.
Another hurdle over. Now I had to see my new consultant, my first oncologist. Such an ugly word, oncology...
8. Lessons learned...
I’m proud of how I coped with my surgery and post-operative recovery. Yes, I felt a bit sorry for myself: I was uncomfortable, grappling with a heavy drain I had to fight in my tangling sheets as I slept and manoeuvre around wherever I went. Washing and using the loo were a particular challenge as I had no carry-bag so where to put the damned thing? The cistern was just a little too far away for it not to get pulled off if I moved; the bathroom shelves similarly just a bit too distant. Compromise! Who says you have to sit face forward on a toilet. I ended up sitting sideways, uncomfortable but safer. Someone should design a little back-pack or a dreaded bum-bag. Actually, they probably have but this hospital didn’t provide anything.
Getting dressed was virtually impossible. I’ve always been slender with a propensity for wearing slim, flattering clothes to make the best of the little I had. My wardrobe comprised tight t-shirts and tops, neat sweaters, skinny jeans, nothing I could slip into. Fortunately I also like to feel pampered and had cashmere joggers I could live in but where were the practical things I could slip my arms into and button over my drain and dressing? Den to the rescue, generously offering a new soft shirt I’d bought him that he disliked and never wore! That, plus another ancient relic I nicked, and one soft pj jacket saw me through, along with the loose cardigans I have aplenty. Awkward but comfy now.
With the drain removed (another trip out to the hospital as Mr B wrongly assumed what he called the District Nurses would do the job - they don’t, and they are Community Nurses now), I requested some waterproof dressing so I could shower. BIG MISTAKE. A week of showers was blissful, particularly as I’d invested in a shower seat to avoid slips (I tended to get a bit dizzy or weak out of the blue). Then back to the hospital to have the dressing removed and hear the results. I’ll by-pass the latter for now.
Within a day of having the dressings removed, the allergic reaction occurred again. Red weals that itched unbearably. But no one had prepared me for a fucked up lymph system. With no lymph nodes and severed nerves under my arm, my body had to learn to readjust slowly. I can only describe it by comparing the itching and pain to shingles: the kind of itch you can’t scratch because it goes down the nerve shaft and moves elsewhere. Within a week, I was a writhing mass of itch from my nape to my buttocks, covered in scratches and tiny scabs, new bumps erupting by the hour. A kind pharmacist attached to our GP practice prescribed a stronger antihistamine thank god but I stupidly had waited a full week so the rash was moving round my waist to my belly. More bumps and blisters, nowhere near the site of any plaster. That was pretty hard to take and I still have some scabs, two months later.
I didn’t miss my breast. If I’m honest, after the decades of discomfort and dislike, it made little difference. The scar was higher than I expected but neat across the breast, with a tiny bump of flesh cleavage-end (it looks a hell of a mess under my arm and feels worse). I don’t know if that was accidental or deliberate but it does mean I can wear v-necks without looking ridiculous. I did feel very vulnerable however. There was an emptiness and my clothes looked horrid. The hospital wasn’t fast in offering a temporary prosthesis (I had to ask, which I thought was a bit much, and then they only had a medium so suggested I unpack it and get it to size. At the time I was fine with that but the prosthesis didn’t lend itself to being reduced and, as my psychotherapist pointed out, it was somewhat insensitive to expect a woman who’d been maimed to deconstruct even a falsie! I rang and asked them to order me the right size).
But it was academic. The itching had left a vast discomfort and there was no way I could wear a bra. Equally there was no way I could go unprotected. I compromised with my sports bra but it was no solution. When I went out, I hunched over, always aware of discomfort and experiencing phantom nipple sensation with every movement - not the enjoyable experience one might hope for. I looked and felt a sorry sight. On top of all that, exercising was obligatory but well-nigh impossible with the itch, the discomfort and the self-pity. I persisted and, having achieved a good level of movement, I ceased doing them regularly. STUPID.
The bra problem was resolved by my goddaughter who recommended Under Armour - they made a seamfree sports bra with a long low band which has been a boon.
Unfortunately, they were end of line - cheaper but limited to XS and S. I bought one of each, could barely get into the S (and I was down to 7 stone 1 by now) but used my mum’s initiative and compromised. Out came the ‘quick unpicker’ and I made little strategic slashes in the deep band so I could breathe. Perfect. Then I found two mediums via Amazon and my bra solution is resolved for now. I’m comfortable, feel protected and supported, can keep my shoulders back and, as a plus, there’s a soft but firm support cup that provides some shape. I’ve never worn the prosthesis I got through the post. Not yet anyway.
Getting dressed was virtually impossible. I’ve always been slender with a propensity for wearing slim, flattering clothes to make the best of the little I had. My wardrobe comprised tight t-shirts and tops, neat sweaters, skinny jeans, nothing I could slip into. Fortunately I also like to feel pampered and had cashmere joggers I could live in but where were the practical things I could slip my arms into and button over my drain and dressing? Den to the rescue, generously offering a new soft shirt I’d bought him that he disliked and never wore! That, plus another ancient relic I nicked, and one soft pj jacket saw me through, along with the loose cardigans I have aplenty. Awkward but comfy now.
With the drain removed (another trip out to the hospital as Mr B wrongly assumed what he called the District Nurses would do the job - they don’t, and they are Community Nurses now), I requested some waterproof dressing so I could shower. BIG MISTAKE. A week of showers was blissful, particularly as I’d invested in a shower seat to avoid slips (I tended to get a bit dizzy or weak out of the blue). Then back to the hospital to have the dressing removed and hear the results. I’ll by-pass the latter for now.
Within a day of having the dressings removed, the allergic reaction occurred again. Red weals that itched unbearably. But no one had prepared me for a fucked up lymph system. With no lymph nodes and severed nerves under my arm, my body had to learn to readjust slowly. I can only describe it by comparing the itching and pain to shingles: the kind of itch you can’t scratch because it goes down the nerve shaft and moves elsewhere. Within a week, I was a writhing mass of itch from my nape to my buttocks, covered in scratches and tiny scabs, new bumps erupting by the hour. A kind pharmacist attached to our GP practice prescribed a stronger antihistamine thank god but I stupidly had waited a full week so the rash was moving round my waist to my belly. More bumps and blisters, nowhere near the site of any plaster. That was pretty hard to take and I still have some scabs, two months later.
I didn’t miss my breast. If I’m honest, after the decades of discomfort and dislike, it made little difference. The scar was higher than I expected but neat across the breast, with a tiny bump of flesh cleavage-end (it looks a hell of a mess under my arm and feels worse). I don’t know if that was accidental or deliberate but it does mean I can wear v-necks without looking ridiculous. I did feel very vulnerable however. There was an emptiness and my clothes looked horrid. The hospital wasn’t fast in offering a temporary prosthesis (I had to ask, which I thought was a bit much, and then they only had a medium so suggested I unpack it and get it to size. At the time I was fine with that but the prosthesis didn’t lend itself to being reduced and, as my psychotherapist pointed out, it was somewhat insensitive to expect a woman who’d been maimed to deconstruct even a falsie! I rang and asked them to order me the right size).
But it was academic. The itching had left a vast discomfort and there was no way I could wear a bra. Equally there was no way I could go unprotected. I compromised with my sports bra but it was no solution. When I went out, I hunched over, always aware of discomfort and experiencing phantom nipple sensation with every movement - not the enjoyable experience one might hope for. I looked and felt a sorry sight. On top of all that, exercising was obligatory but well-nigh impossible with the itch, the discomfort and the self-pity. I persisted and, having achieved a good level of movement, I ceased doing them regularly. STUPID.
The bra problem was resolved by my goddaughter who recommended Under Armour - they made a seamfree sports bra with a long low band which has been a boon.
Unfortunately, they were end of line - cheaper but limited to XS and S. I bought one of each, could barely get into the S (and I was down to 7 stone 1 by now) but used my mum’s initiative and compromised. Out came the ‘quick unpicker’ and I made little strategic slashes in the deep band so I could breathe. Perfect. Then I found two mediums via Amazon and my bra solution is resolved for now. I’m comfortable, feel protected and supported, can keep my shoulders back and, as a plus, there’s a soft but firm support cup that provides some shape. I’ve never worn the prosthesis I got through the post. Not yet anyway.
Friday 28 December 2018
7. A lesson about preconceptions: surgery
I was terrified of having surgery. In my mind, two things were paramount: loss of control of everything and the omnipresent fear of vomiting. I’ve already written about how it led to a meltdown and how I was suddenly struck with pragmatism (with a bit of self-sabotage in the swallowing problem - cant make things too easy for myself, can I?).
These fears partly lay behind my option to have the surgery done privately. I believed I’d have a greater degree of control in a smaller system - I certainly didn’t expect better surgery - and that the staff would be obliged to listen to my needs as a paying client rather than a patient going through the system. I won’t ever know if things would have been different. It’s enough to say that I was allowed my control, I was listened to at every stage and the staff bent over backwards to accommodate my needs.
My friend Anne came to collect us at 8am Saturday morning (13 October) and drive us over to NR Hospital. I was in a diazepam haze, feeling like I was heading for execution but resigned to my fate. The process was a lot slower and more protracted than I’d have liked - my original operation had been scheduled for 8am, then 9.30, then 10.30 - but I’m not complaining. Den stayed with me all the time. People popped in occasionally, Mr B visited to see if I needed any pre-op sedation (no, I was fine - miracle) and draw on me with a biro. Sometimes there’s no place for high technology! The anaesthetist introduced himself, the head nurse introduced himself and explained I could walk down to theatre or be trollied.
I walked, wearing my cosy cardigan and comfy Sketchers over the ubiquitous hospital gown. It wasn’t far, being a small hospital, into pre-op. Then I came round in my room, all done. Staff in and out, a dressing to be changed because of more bleeding, a blood-thinning injection in my tummy and then - The Socks. One of two constant nightmares for the next two weeks, those bloody socks to prevent DVT. Agony, itchy, impossible to get on and off one-armed and therefore requiring the clumsy nursing services of my poor husband.
I’d had a full mastectomy and a full axillary clearance, which usually requires a few days in hospital. Mr B, in his infinite wisdom, recognised my mental wellbeing was paramount so, having ensured all my tests were up to scratch, he agreed to discharge me that evening as I’d feel more in control in my own environment. Marilyn and her husband came to pick us up (good job too as she has an organisational head on her and remembered far more about the instructions I was given than Den and I did - I was dopey and he was a bit stressed).
Then the practicalities hit me. I didn’t remember being told I’d be attached to a drain so that was a surprise and quite difficult to get dressed around, let alone carry it everywhere. I’ll never be able to drink raspberry smoothie again, that’s for sure. Plus the sock issue. They itched and hurt round the tops but were essential. Apart from that, I was fine. I needed no pain relief throughout the whole recovery period. The only major problem seemed to be that my dressing wasn’t waterproof so a simple wipe-wash was the best I got for a week, till we went back for the next consultation.
These fears partly lay behind my option to have the surgery done privately. I believed I’d have a greater degree of control in a smaller system - I certainly didn’t expect better surgery - and that the staff would be obliged to listen to my needs as a paying client rather than a patient going through the system. I won’t ever know if things would have been different. It’s enough to say that I was allowed my control, I was listened to at every stage and the staff bent over backwards to accommodate my needs.
My friend Anne came to collect us at 8am Saturday morning (13 October) and drive us over to NR Hospital. I was in a diazepam haze, feeling like I was heading for execution but resigned to my fate. The process was a lot slower and more protracted than I’d have liked - my original operation had been scheduled for 8am, then 9.30, then 10.30 - but I’m not complaining. Den stayed with me all the time. People popped in occasionally, Mr B visited to see if I needed any pre-op sedation (no, I was fine - miracle) and draw on me with a biro. Sometimes there’s no place for high technology! The anaesthetist introduced himself, the head nurse introduced himself and explained I could walk down to theatre or be trollied.
I walked, wearing my cosy cardigan and comfy Sketchers over the ubiquitous hospital gown. It wasn’t far, being a small hospital, into pre-op. Then I came round in my room, all done. Staff in and out, a dressing to be changed because of more bleeding, a blood-thinning injection in my tummy and then - The Socks. One of two constant nightmares for the next two weeks, those bloody socks to prevent DVT. Agony, itchy, impossible to get on and off one-armed and therefore requiring the clumsy nursing services of my poor husband.
I’d had a full mastectomy and a full axillary clearance, which usually requires a few days in hospital. Mr B, in his infinite wisdom, recognised my mental wellbeing was paramount so, having ensured all my tests were up to scratch, he agreed to discharge me that evening as I’d feel more in control in my own environment. Marilyn and her husband came to pick us up (good job too as she has an organisational head on her and remembered far more about the instructions I was given than Den and I did - I was dopey and he was a bit stressed).
Then the practicalities hit me. I didn’t remember being told I’d be attached to a drain so that was a surprise and quite difficult to get dressed around, let alone carry it everywhere. I’ll never be able to drink raspberry smoothie again, that’s for sure. Plus the sock issue. They itched and hurt round the tops but were essential. Apart from that, I was fine. I needed no pain relief throughout the whole recovery period. The only major problem seemed to be that my dressing wasn’t waterproof so a simple wipe-wash was the best I got for a week, till we went back for the next consultation.
6. A new man in my marriage
It’s time to give some credit to the internet for helping to get me through this crap so far. A couple of years back, I joined a discussion group on depression. Not my best idea - it was unrelentingly depressing and I backed out after a while. As always, I found myself offering ‘advice’ and reassurance but rarely getting the responses I needed to my my own questions.
Someone mentioned in a post a Michael Sealey on YouTube and I followed it up. He makes hypnosis videos linked to a range of states of mind and a few people said they were great for inducing sleep. I was struggling with Mindfulness, not being the kind of person who can set her mind to a routine of practice, so I listened to a couple, got irritated and let the idea slip to the back of my mind. Now I was desperate. I’m not a great candidate for hypnosis - people who need to feel in control and people who easily dissociate, as I do, rarely are, but I was willing to give it a go.
https://m.youtube.com/results?search_query=Michael+Sealey
Faced with a perplexing range of choices, some distinctly scary like getting in touch with your Inner Child (she’s safer out of this part of my life thank you) and challenging phobic behaviour (essential but not quite the right time to stir up the bad stuff), I identified a few I thought might be useful and gave them a go.
Michael has, for all his irritations, become a key part of my Breast Cancer support. I started with Anxiety Reduction and Reversal, moved onto Anxiety, Digestion and IBS, Calming an Overactive Mind and, my favourite, the ones on Clearing Subconscious Negativity. At times, I probably did as many as 5 sessions in a day, anything to keep the anxiety at bay and my mind off reaching for diazepam.
And they helped. Yes, I still dissociated and I still missed loads of what he said, I mentally bickered with him and criticised his choice of words and images, but I rested. I slept at night better than I’ve ever slept. Den even joined me to learn to breathe mindfully and help his own anxiety - not the best experience as he was gently snoring within two minutes so I had to just lie there and wait for him to wake up - but it was something positive we could share.
What’s wrong with Michael Sealey? He uses too many words. Little things like ‘your eyes close down.’ Close is enough. Ok, I’m pernickety and easily irritated. Then he’ll gently suggest you picture a picture frame or a perfect place where you feel safe and go on to give you suggestions that completely disempower you! By the time he’s finished his suggestions, I don’t know what I want and I’ve forgotten what instinctively came to mind. The best ‘bad’ thing is his suggestion about approaching a green tree (trees aren’t green, my mind yells). Its branches are covered in bright red balloons (mind heads for Banksy’s little girl). Untie one and release it (I start thinking about environmental damage and harm to wildlife). I said I wasn’t a good candidate for hypnosis, didn’t I?
Yet I am calmer. I sleep well (particularly since I’ve been on steroids for 5 days). I rarely fail to fall asleep and sleep till maybe 6 when my bladder demands attention - and then I tune in for another dose of Michael which keeps me relaxed in the early morning and sometimes brings more sleep. I can’t help feeling some of the messages are getting embedded, much to my amazement, so I believe I owe this man countless apologies and a lot of credit for bringing emotional comfort I usually find so hard to grasp. Long may it last.
I’ve swapped cuddles (painful) and snoring for earplugs and a stranger. Only temporarily.
Someone mentioned in a post a Michael Sealey on YouTube and I followed it up. He makes hypnosis videos linked to a range of states of mind and a few people said they were great for inducing sleep. I was struggling with Mindfulness, not being the kind of person who can set her mind to a routine of practice, so I listened to a couple, got irritated and let the idea slip to the back of my mind. Now I was desperate. I’m not a great candidate for hypnosis - people who need to feel in control and people who easily dissociate, as I do, rarely are, but I was willing to give it a go.
https://m.youtube.com/results?search_query=Michael+Sealey
Faced with a perplexing range of choices, some distinctly scary like getting in touch with your Inner Child (she’s safer out of this part of my life thank you) and challenging phobic behaviour (essential but not quite the right time to stir up the bad stuff), I identified a few I thought might be useful and gave them a go.
Michael has, for all his irritations, become a key part of my Breast Cancer support. I started with Anxiety Reduction and Reversal, moved onto Anxiety, Digestion and IBS, Calming an Overactive Mind and, my favourite, the ones on Clearing Subconscious Negativity. At times, I probably did as many as 5 sessions in a day, anything to keep the anxiety at bay and my mind off reaching for diazepam.
And they helped. Yes, I still dissociated and I still missed loads of what he said, I mentally bickered with him and criticised his choice of words and images, but I rested. I slept at night better than I’ve ever slept. Den even joined me to learn to breathe mindfully and help his own anxiety - not the best experience as he was gently snoring within two minutes so I had to just lie there and wait for him to wake up - but it was something positive we could share.
What’s wrong with Michael Sealey? He uses too many words. Little things like ‘your eyes close down.’ Close is enough. Ok, I’m pernickety and easily irritated. Then he’ll gently suggest you picture a picture frame or a perfect place where you feel safe and go on to give you suggestions that completely disempower you! By the time he’s finished his suggestions, I don’t know what I want and I’ve forgotten what instinctively came to mind. The best ‘bad’ thing is his suggestion about approaching a green tree (trees aren’t green, my mind yells). Its branches are covered in bright red balloons (mind heads for Banksy’s little girl). Untie one and release it (I start thinking about environmental damage and harm to wildlife). I said I wasn’t a good candidate for hypnosis, didn’t I?
Yet I am calmer. I sleep well (particularly since I’ve been on steroids for 5 days). I rarely fail to fall asleep and sleep till maybe 6 when my bladder demands attention - and then I tune in for another dose of Michael which keeps me relaxed in the early morning and sometimes brings more sleep. I can’t help feeling some of the messages are getting embedded, much to my amazement, so I believe I owe this man countless apologies and a lot of credit for bringing emotional comfort I usually find so hard to grasp. Long may it last.
I’ve swapped cuddles (painful) and snoring for earplugs and a stranger. Only temporarily.
Thursday 27 December 2018
5. Jan - a bit of background
Only what’s relevant to my Cancer Journey (not a term I plan to use again - I hate cliches), promise. I’ve had mental health problems as long as I can remember. I’ve tried everything going - psychological therapies, medications, almost every alternative therapy going. I will never give up. It took me till my 40s to realise what it was all about. It’s enough here to say that I have severe anxiety, am prone to panic attacks, have emetophobia (a life-controlling fear of vomiting which affects every aspect of my life - I was 5 when I was last sick) and a consequent eating disorder. I need total control or I fall apart.
Well, now I fell apart. Meltdown. Anxiety overload. Panic attacks which diazepam couldn’t touch. Dennis was his usual rock - concerned and supportive, doing just what I needed and no more. But he couldn’t conceal his anxiety (he’s not given to doing emotions - probably best in this relationship!) and I felt an overwhelming guilt that I’d added cancer to his mental burden. Cancer didn’t bother me. It’s only a disease and it’s treatable, not the death sentence it was. All I cared about was that people are sick when they have a general anaesthetic. My mind is stuck in the 1950s!!
I rang my surgery and asked to see a woman doctor who would understand about how women might feel about a mastectomy and was good with mental health. I can picture her but don’t recall her name. I can thank her for about an hour’s break from anxiety as she made me so fucking angry. She’d made her mind up what was wrong: ‘any woman would feel as you do,’ ‘breast cancer can seem terrifying...’ NO, you’re not listening. I’m not terrified about the cancer. I’m terrified of my panic attacks. The best I got was advice to take 3 diazepam a day and no, she was running late so she couldn’t have a word with my husband. Fury can be a good break.
Diazepam didn’t help, as I knew it wouldn’t. I only use it when I need it (increasingly less often than I did) but it barely touches the full onslaught of anxiety and panic in me. A phone consultation with another doctor led to a prescription for propranolol which dried my mouth more than anything but did take the edge off the shaking. I stopped the diazepam, except when needed for crises, and kept to one propranolol in the morning. I was back in control.
But I had to go back to the hospital for more results.
Another ‘Fuck’ response: a 2.5cm malignant tumour under my breast, a 1.5cm tumour leading to my underarm, the two malignant little bumps AND all three lymph biopsies cancerous. Dr T the radiologist may have been short on interpersonal skills but he’d been thorough! Change of plan: full mastectomy and axillary clearance next week.
Then an odd thing happened. Something switched off in my brain and I stopped being afraid. Resignation? Acceptance? Pragmatism? My psychotherapist seemed to see it as denial (and I can see there is a tinge of that now, but not then). I felt it was something different. I felt reconciled to the fact that I was having to try uncharted waters.
However, my inner saboteur wouldn’t allow that level of comfort: three days before the operation, I sipped my cup of tea and soaked the duvet cover - I couldn’t swallow properly and I still can’t. It’s like my mind has a gremlin that doesn’t like me feeling remotely comfortable. That leaves me taking tablets with tiny nibbles of banana and drinking with a straw, tiny amounts at a time - more air than fluid. Fortunately I’ve no problem with solids, just fluids. Weird. Well, not for me given my mental health history.
Bring on the surgery...
Well, now I fell apart. Meltdown. Anxiety overload. Panic attacks which diazepam couldn’t touch. Dennis was his usual rock - concerned and supportive, doing just what I needed and no more. But he couldn’t conceal his anxiety (he’s not given to doing emotions - probably best in this relationship!) and I felt an overwhelming guilt that I’d added cancer to his mental burden. Cancer didn’t bother me. It’s only a disease and it’s treatable, not the death sentence it was. All I cared about was that people are sick when they have a general anaesthetic. My mind is stuck in the 1950s!!
I rang my surgery and asked to see a woman doctor who would understand about how women might feel about a mastectomy and was good with mental health. I can picture her but don’t recall her name. I can thank her for about an hour’s break from anxiety as she made me so fucking angry. She’d made her mind up what was wrong: ‘any woman would feel as you do,’ ‘breast cancer can seem terrifying...’ NO, you’re not listening. I’m not terrified about the cancer. I’m terrified of my panic attacks. The best I got was advice to take 3 diazepam a day and no, she was running late so she couldn’t have a word with my husband. Fury can be a good break.
Diazepam didn’t help, as I knew it wouldn’t. I only use it when I need it (increasingly less often than I did) but it barely touches the full onslaught of anxiety and panic in me. A phone consultation with another doctor led to a prescription for propranolol which dried my mouth more than anything but did take the edge off the shaking. I stopped the diazepam, except when needed for crises, and kept to one propranolol in the morning. I was back in control.
But I had to go back to the hospital for more results.
Another ‘Fuck’ response: a 2.5cm malignant tumour under my breast, a 1.5cm tumour leading to my underarm, the two malignant little bumps AND all three lymph biopsies cancerous. Dr T the radiologist may have been short on interpersonal skills but he’d been thorough! Change of plan: full mastectomy and axillary clearance next week.
Then an odd thing happened. Something switched off in my brain and I stopped being afraid. Resignation? Acceptance? Pragmatism? My psychotherapist seemed to see it as denial (and I can see there is a tinge of that now, but not then). I felt it was something different. I felt reconciled to the fact that I was having to try uncharted waters.
However, my inner saboteur wouldn’t allow that level of comfort: three days before the operation, I sipped my cup of tea and soaked the duvet cover - I couldn’t swallow properly and I still can’t. It’s like my mind has a gremlin that doesn’t like me feeling remotely comfortable. That leaves me taking tablets with tiny nibbles of banana and drinking with a straw, tiny amounts at a time - more air than fluid. Fortunately I’ve no problem with solids, just fluids. Weird. Well, not for me given my mental health history.
Bring on the surgery...
4. Sorry to disillusion you...
I’ve never been a fan of mammograms since the first breast surgery. They frankly are bloody painful and once I blacked out briefly, only to find myself stuck between metal plates, dangling, surrounded by 6 staff, none of whom thought to release me might help. Medical science remains a male-dominated domain. If they had to routinely have their testicles squeezed ruthlessly between metal plates, they\d have come up with a better alternative by now. But hey, it’s just women, just breasts... So, to my embarrassment (by now I’d moved from History teacher to PSHE and taught older pupils about the importance of examining their breasts while failing to admit all I did was a cursory swipe in the shower), I’ve been known to skip my 3-yearly mammogram. This year I didn’t. This year in January I got a clear result. Yay!!
How come 8 months later, I find myself with aggressive breast cancer, two tumours and more...?? Apparently, mammograms aren’t infallible. They also depend on the radiologist’s observation and interpretation. Maybe I was unlucky. It’s something I’ll fret more about once I’m through the crap of right now: how safe are we, relying on mammograms?
Slipping on my bra one morning (actually Wednesday 12 September), I glimpsed two small ‘lumps’ on my left areola. I stared. They were raised, pale, soft, nothing special but I’d not seen them before. I glared at them balefully and through the morning kept checking. Yep, still there. Now, I’m the first to admit I’m a coward - I even have to have dental sedation for a filling - but Mum had breast cancer twice and I’m not stupid so I rang and arranged to see a GP Friday.
Dr Wong (I’ll use her identity as I owe her so much) wasn’t too concerned but she examined my breasts (ouch) and asked if I was aware of a lump between my ribs. Of course I wasn’t. As it was so close to my smiley scar, we decided it was probably scar tissue. However, she thought it best to get a specialist to have a look and made a referral. Thank you, Dr Wong. That saved my life.
I went home and broke the news to my husband and his face told me that waiting for the NHS was waiting too long for him so I arranged to go privately. After a couple of cock-ups, I got an appointment at a fairly local private hospital breast clinic and saw my consultant, Mr B. Like Dr Wong, he wasn’t unduly concerned. He examined my breast thoroughly but much more gently and sent me off for an ultrasound, a very comfortable experience (I should have known better) which led to the radiologist announcing he could see nothing untoward. I remember saying ‘I love you, Dr B’ and wondering if it was inappropriate but I was so pleased I didn’t care that much.
Back to the consultant, who decided the lumps needed biopsies. Not given to wasting time, he didn’t give the local anaesthetic much time to work but I soon pointed out his error and in went some more anaesthetic. I should never have driven myself. I drove home with a touch of shock but uplifted by the positive response from Mr B and the clear ultrasound.
The worst thing to happen that week was an allergic reaction to the dressing - red itchy weals - which meant I loosened the waterproof dressing and my final shower led to a good soaking of the dressing. I returned to the hospital with a horrid brown soggy mess over my nipple, dreading what was underneath.
My news
This time I arranged to leave my car at a friend’s house close to the hospital and Marilyn drove me. The nurse asked if she was coming in with me (warning sign!) and I blithely said no. Mr B explained he’d had to ring for the histology report and then his voice dropped. Much to his shock (his word) both were positive for cancer. I said ‘fuck.’ I then apologised but he assured me he was used to much worse! I tried to listen as he explained the probable options: either a partial mastectomy and radiotherapy or a full mastectomy. I’m 67 with a breast I loathe. A no-brainer. Full mastectomy please. But first more tests. I came out, shook my head mournfully at Marilyn who gave me a hug and sat with me in a private room to wait. Everyone needs a Marilyn.
Mammogram and another ultrasound. Knowing you have cancer seems to change your perspective - I faced that mammogram like a warrior and the results were good. I had a different radiologist (Dr T, who I was warned was young and very thorough). Thorough he was. It was painful and horrible and he gave a self-directed running commentary that did nothing to ease my mind. He then did three lymph biopsies (rather jumpy but not painful). The bills were adding up!
Home to break the news to Dennis. Oddly, I felt no fear and had to assure him it was only breast cancer, was completely treatable and the worst thing for me was going to to be my mental health.
How come 8 months later, I find myself with aggressive breast cancer, two tumours and more...?? Apparently, mammograms aren’t infallible. They also depend on the radiologist’s observation and interpretation. Maybe I was unlucky. It’s something I’ll fret more about once I’m through the crap of right now: how safe are we, relying on mammograms?
Slipping on my bra one morning (actually Wednesday 12 September), I glimpsed two small ‘lumps’ on my left areola. I stared. They were raised, pale, soft, nothing special but I’d not seen them before. I glared at them balefully and through the morning kept checking. Yep, still there. Now, I’m the first to admit I’m a coward - I even have to have dental sedation for a filling - but Mum had breast cancer twice and I’m not stupid so I rang and arranged to see a GP Friday.
Dr Wong (I’ll use her identity as I owe her so much) wasn’t too concerned but she examined my breasts (ouch) and asked if I was aware of a lump between my ribs. Of course I wasn’t. As it was so close to my smiley scar, we decided it was probably scar tissue. However, she thought it best to get a specialist to have a look and made a referral. Thank you, Dr Wong. That saved my life.
I went home and broke the news to my husband and his face told me that waiting for the NHS was waiting too long for him so I arranged to go privately. After a couple of cock-ups, I got an appointment at a fairly local private hospital breast clinic and saw my consultant, Mr B. Like Dr Wong, he wasn’t unduly concerned. He examined my breast thoroughly but much more gently and sent me off for an ultrasound, a very comfortable experience (I should have known better) which led to the radiologist announcing he could see nothing untoward. I remember saying ‘I love you, Dr B’ and wondering if it was inappropriate but I was so pleased I didn’t care that much.
Back to the consultant, who decided the lumps needed biopsies. Not given to wasting time, he didn’t give the local anaesthetic much time to work but I soon pointed out his error and in went some more anaesthetic. I should never have driven myself. I drove home with a touch of shock but uplifted by the positive response from Mr B and the clear ultrasound.
The worst thing to happen that week was an allergic reaction to the dressing - red itchy weals - which meant I loosened the waterproof dressing and my final shower led to a good soaking of the dressing. I returned to the hospital with a horrid brown soggy mess over my nipple, dreading what was underneath.
My news
This time I arranged to leave my car at a friend’s house close to the hospital and Marilyn drove me. The nurse asked if she was coming in with me (warning sign!) and I blithely said no. Mr B explained he’d had to ring for the histology report and then his voice dropped. Much to his shock (his word) both were positive for cancer. I said ‘fuck.’ I then apologised but he assured me he was used to much worse! I tried to listen as he explained the probable options: either a partial mastectomy and radiotherapy or a full mastectomy. I’m 67 with a breast I loathe. A no-brainer. Full mastectomy please. But first more tests. I came out, shook my head mournfully at Marilyn who gave me a hug and sat with me in a private room to wait. Everyone needs a Marilyn.
Mammogram and another ultrasound. Knowing you have cancer seems to change your perspective - I faced that mammogram like a warrior and the results were good. I had a different radiologist (Dr T, who I was warned was young and very thorough). Thorough he was. It was painful and horrible and he gave a self-directed running commentary that did nothing to ease my mind. He then did three lymph biopsies (rather jumpy but not painful). The bills were adding up!
Home to break the news to Dennis. Oddly, I felt no fear and had to assure him it was only breast cancer, was completely treatable and the worst thing for me was going to to be my mental health.
3. Joining the Nefertiti Club
I guess the title needs an explanation. I started teaching History in 1974 at an inner city all-girls comprehensive, recently changed from a grammar school and ill-equipped to deal with less academic pupils who quickly became my favourites. My first lesson with the new Year 9s was “What is History?” The workbook presented a series of black and white images of People Through Time (History being “about people and what they have said and done in the past.”) Images threw up interesting questions, well, I thought so - why were they mostly men? why not all photographs? - the obvious stuff alongside a lot more probing things.
Marking their homework - a thoughtful comment about each of the images - I was completely thrown by what Biddy McElhone had written and it’s stuck with me ever since: ‘There was this ejipshun qeen who had her tit choped off.’ I kept going back to it, determined not to be thwarted by a 13-year-old’s mind and then had my Eureka moment. I remembered saying in the lesson ‘Just think, all we have that we know about Queen Nefertiti is this one bust.’ It never occurred to me to explain what a bust was!
So I joined what I call the Nefertiti Club - one of many with a tit chopped off.
It’s been no big issue, apart from the severe discomfort caused by the axillary clearance and finding things to replace my beautiful bras. I was never a fan of that breast: it already had a long smiley scar from having a 5cm fibroadenoma removed in the 1980s, which left it permanently tender inside and numb on the underside. I’m small-breasted and didn’t even contemplate the partial mastectomy originally offered. Just get rid of it. Huh, not as simple as that, is it!
Marking their homework - a thoughtful comment about each of the images - I was completely thrown by what Biddy McElhone had written and it’s stuck with me ever since: ‘There was this ejipshun qeen who had her tit choped off.’ I kept going back to it, determined not to be thwarted by a 13-year-old’s mind and then had my Eureka moment. I remembered saying in the lesson ‘Just think, all we have that we know about Queen Nefertiti is this one bust.’ It never occurred to me to explain what a bust was!
So I joined what I call the Nefertiti Club - one of many with a tit chopped off.
It’s been no big issue, apart from the severe discomfort caused by the axillary clearance and finding things to replace my beautiful bras. I was never a fan of that breast: it already had a long smiley scar from having a 5cm fibroadenoma removed in the 1980s, which left it permanently tender inside and numb on the underside. I’m small-breasted and didn’t even contemplate the partial mastectomy originally offered. Just get rid of it. Huh, not as simple as that, is it!
2. Vanity Retrospective
Having gone almost entirely white-haired and bored with the obligatory short cut, I experimented by growing my hair early this year. It’s thick and grows fast, to my hairdresser’s amusement, and “does anything” she wants it to do. The longest it was allowed to get was a shoulder-length bob (hence the choice of picture - vanity) where I felt feminine, a little exotic for my age (67) and bloody irritated. I was even asked by a friendly saleswoman how I coloured my hair so beautifully so it must have taken years off me. It didn’t take long for me to remember the hours wasted in hair care, daily styling, constant fiddling and how much I hated hair blowing around my face. Gradually it got trimmed shorter till I had a nice neck-length short bob I could blow dry upside down. Pimpsy, to borrow my Welsh husband’s term for easy-peasy.
After surgery, Den bravely attempted to blow dry my bob. A slightly scorched ear, plus the knowledge I’d soon be losing it all anyway, led to a simple decision to have a crop. Unable to get to the salon, I arranged a home visit. That was one of the few times I cried: down the phone, trying to explain why I couldn’t get to the salon. ‘I’ve just had a mast - hiccup - mast - sob...’ I got it out eventually. Liz came round, gave me a really short crop (not my first) and promised to return when I needed my buzz cut. Of course, it just grew as fast as ever but there’s no point in another trim. I hate the idea of losing clumps of hair, throwing it away, wondering if I’ve shiny bald spots. I had no idea you lose virtually all hair and I care most about losing my eyelashes (vanity again). Worse, I have Denis Healey eyebrows and visions of losing all the fine hair and being left with those great long spider legs, strong, springy and resilient, standing out at all angles.
I’m booked for what they call a “hair loss consultation” with MacMillan at the hospital. My goddaughter’s taking me to choose my wig and, drawn as I am to something different, even with a bit of colour, I’ll be pragmatic and select a nice white short crop like I’ve got already. My 9-year-old neighbour has offered to lend me her Hallowe’en wig, bless her. It’s a fluorescent pink Flapper bob and I’m tempted! Whether I’ll arrange a buzz cut there, just bite the bullet, I dont know. It’s not the best time of year to lose that warmth and protection and I’ll hate wearing a wig so I’ve already ordered 2 cashmere beanies in White Company’s sale (I’m such a sucker for cashmere) and I’ll get a couple of functional ones from MacMillan. I’m not going scarfy- to me that screams out cancer victim. I’m not feeling that (yet).
After surgery, Den bravely attempted to blow dry my bob. A slightly scorched ear, plus the knowledge I’d soon be losing it all anyway, led to a simple decision to have a crop. Unable to get to the salon, I arranged a home visit. That was one of the few times I cried: down the phone, trying to explain why I couldn’t get to the salon. ‘I’ve just had a mast - hiccup - mast - sob...’ I got it out eventually. Liz came round, gave me a really short crop (not my first) and promised to return when I needed my buzz cut. Of course, it just grew as fast as ever but there’s no point in another trim. I hate the idea of losing clumps of hair, throwing it away, wondering if I’ve shiny bald spots. I had no idea you lose virtually all hair and I care most about losing my eyelashes (vanity again). Worse, I have Denis Healey eyebrows and visions of losing all the fine hair and being left with those great long spider legs, strong, springy and resilient, standing out at all angles.
I’m booked for what they call a “hair loss consultation” with MacMillan at the hospital. My goddaughter’s taking me to choose my wig and, drawn as I am to something different, even with a bit of colour, I’ll be pragmatic and select a nice white short crop like I’ve got already. My 9-year-old neighbour has offered to lend me her Hallowe’en wig, bless her. It’s a fluorescent pink Flapper bob and I’m tempted! Whether I’ll arrange a buzz cut there, just bite the bullet, I dont know. It’s not the best time of year to lose that warmth and protection and I’ll hate wearing a wig so I’ve already ordered 2 cashmere beanies in White Company’s sale (I’m such a sucker for cashmere) and I’ll get a couple of functional ones from MacMillan. I’m not going scarfy- to me that screams out cancer victim. I’m not feeling that (yet).
Wednesday 26 December 2018
1. Boxing Day 2018
Santa came early for me. His gift? My first chemotherapy session starting at 9am on Christmas Eve. Fortunately I’d already postponed Christmas till next summer at least on the mistaken assumption I’d be well into chemotherapy and not feeling up to it. Neither of us is a Christmassy person and my husband is being a rock, albeit a hovering rock waiting for the worst to happen.
That’s usually my role - waiting for the worst to happen.
I should have stayed up longer yesterday with the steroid energy surge. Today I’ve been bed-bound, but nothing particularly bad, thank god. It’s Day 3 and the worst so far has been the steroid effect: steroids and my guts do not mix well. But I’ve gained 5lb plus some appetite (at a time when I expected to be terrified of eating in case I felt sick - more about that another time) so that’s really cheered me up. Only one thing: I went mad on Christmas Day replenishing my ‘skinny Jan’ wardrobe from Jigsaw’s and Mango’s online sales. By the time they arrive, I won’t be able to squeeze into anything. That’s the problem with this situation - uncertainty everywhere.
By the way, I’ve never blogged before and I’m doing this for my own benefit. Bear with me. Breast cancer and chemotherapy were unexpected (are they ever expected?), unwelcome (are they ever...?) and terrifying. Only terrifying in an unexpected way. To me, breast cancer is just a disease. My mum had it twice and recovered both times. I know of several women who’ve been treated and declared clear and none who’ve died. I’ve never thought about it as life-threatening, though I’ve accepted it would be without all the treatments. But I suffer from lifelong mental health problems including emetophobia (fear of vomiting) and my terror has focused on the treatments. I’m a master of catastrophising and I’ve put myself through hell. I’m not fooling myself - I know there’s worse to come but it’s not as bad as the catastrophising which at times has paralysed my brain.
I’ve got this far. I’ve had the surgery and recovered well. I’ve started the first of the treatments. I’ve accepted it.
That’s usually my role - waiting for the worst to happen.
I should have stayed up longer yesterday with the steroid energy surge. Today I’ve been bed-bound, but nothing particularly bad, thank god. It’s Day 3 and the worst so far has been the steroid effect: steroids and my guts do not mix well. But I’ve gained 5lb plus some appetite (at a time when I expected to be terrified of eating in case I felt sick - more about that another time) so that’s really cheered me up. Only one thing: I went mad on Christmas Day replenishing my ‘skinny Jan’ wardrobe from Jigsaw’s and Mango’s online sales. By the time they arrive, I won’t be able to squeeze into anything. That’s the problem with this situation - uncertainty everywhere.
By the way, I’ve never blogged before and I’m doing this for my own benefit. Bear with me. Breast cancer and chemotherapy were unexpected (are they ever expected?), unwelcome (are they ever...?) and terrifying. Only terrifying in an unexpected way. To me, breast cancer is just a disease. My mum had it twice and recovered both times. I know of several women who’ve been treated and declared clear and none who’ve died. I’ve never thought about it as life-threatening, though I’ve accepted it would be without all the treatments. But I suffer from lifelong mental health problems including emetophobia (fear of vomiting) and my terror has focused on the treatments. I’m a master of catastrophising and I’ve put myself through hell. I’m not fooling myself - I know there’s worse to come but it’s not as bad as the catastrophising which at times has paralysed my brain.
I’ve got this far. I’ve had the surgery and recovered well. I’ve started the first of the treatments. I’ve accepted it.
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