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Friday, 31 May 2013

Bitter sweet

I admit to being a bit of a conventional girl.  I also come from a long line of Doctor Trusters.  It took a lot for me to break with the medical profession when trying to find evidence based treatment for eating disorders some 4 years ago.  However, I am not prepared to dismiss entirely the alternative medicine sector.  Most of it is crackpot but I come from an era when physiotherapy was regarded as "alternative" and the cure for a "bad back" was to take to your bed for months, not do Pilates or Yoga.  So keeping an open mind is necessary.

I sat next to a lady in the Day Unit last week, who talked to me about Apricot Kernels and their efficacy in treating cancer.  I felt I should investigate and found myself in the surreal world of alternative cancer treatment.  Now, I'm all for a nice conspiracy theory.  My more regular readers will be well aware of my views on medical insurance industry pressure in the 1990's to lower the "normal" range of BMI, thus making over 60 million US citizens overweight, literally overnight, and subject to higher insurance premiums.  I am subscribe to the food industry playing us for a doozie with "diets" ready packaged and promising you untold happiness when you lose a few pounds.  The answer is to change your lifestyle, not sign up for some spurious "diet" food, via a glossy TV ad.  "Lose 8lbs in a 2 weeks with the U R A Sucker diet plan - special offer this week, only $10 a day to eat cardboard and flavour enhancers."

However, this alternative cancer treatment stuff appears to me to be about as dangerous as some of the more weird and wacky ways of treating eating disorders that are peddled out there.  (Stroke a horse every day for 5 months on our $300 a day ranch and you will be cured forever!).

Cyanide is cyanide folks.  I particularly like the web MD uses for Apricot Kernel.

So am I being too cynical and demanding and siding with the establishment?  Should I be more open minded about this stuff?  Having been so taken with Lord Saatchi's article, should I not be considering medical innovations?  

Why I don't Google

I have stuck pretty firmly to my not Googling my illness viewpoint.  However, it would be impossible to do without my good friend, Cathy, being on stand-by to answer all my questions.

Everything tasted of salt yesterday and I guessed it was a side effect of chemo but thought I would run it past Cathy anyway.  She looked up the side effects of my chemo, confirmed that a "change in taste" was, indeed, one of the side effects and sent me a link to follow.

With mounting horror I read that, should I be really unlucky, the major side effects could make me bald, make my nails fall out and make my hands and feet go bright red.  But it would be OK, because the diarrhoea would mean I would never get out of the bathroom so no one would notice.

Ewwww

I stopped reading the leaflet and we went back to chatting about other stuff.

We all need a tame Doctor of Bio-Chemistry in this situation.  Do you think we could prescribe her on the National Health?




Thursday, 30 May 2013

Shunning the Limelight

I woke with a hangover this morning.  Entirely drug induced.  And everything tastes of salt.  Copious amounts of tea and darling C's choccie biscuit cake alleviated the symptoms enough for my Big Day Out.

We went to the Suffolk Show today.   Just HWISO and I.  It was rather peculiar to be on our own, with no children (busy revising) and no clear plans.  Well, no clear plans except that we were going to split up immediately on entering the show ground and do our own thing.  His own thing involves looking at big farm machinery and talking about farming.  My own thing involves window shopping and doing the Sudoku with more tea and a muffin.

I have been promising myself some new wellies every since Mum died so I went off to Du Barry to replace my 12 year old ones that have died from overuse and under-care.  On the way I passed a cashmere stall.  I can't resist cashmere stalls.  I was going to go and get some gloves for the girls' stockings (have half done the Christmas shopping) but was instead drawn in to buying a very expensive birthday present for HWISO, who has been wonderful and above and beyond these past 9 months.  The result was that I ran out of money and had to call HWISO to go halves on the new boots.  He bought them all as my birthday present - a most satisfactory outcome.

We then went our separate ways again - he to buy hoodies from the dog stall dark blue with the slogans "Who's walking Who?" and "Keep Calm and Walk the Dogs".  He's never owned a hoodie before and has therefore never realised how snuggly they are.  I have realised this and bought myself one, which I am only allowed to wear when the girls are not around as it is "Not Cool, Mum".  He, on the other hand, apparently looks "sweet" in them, when showcasing them to the girls on our return home.  Sigh.

I took  myself off to the Vice Presidents tent for cups of tea , muffins, bottles of water and the Sudoku.

As I wandered round the show later, I bumped into loads of friends and acquaintances - some knew I was ill.  Some didn't.  Those who didn't I passed off with the usual self-effacing "The wretched cancer's back again - such a bore."  Those who did know seemed to want to talk of nothing else.  Lots of  "How ARE you?", which is lovely and reassuring.  I answered "Fine".  However, when they went on to ask how treatment was going or what exactly was in my chemotherapy, despite my best efforts to change the subject, I began to get peevish.

To the point of rudeness.

HWISO loves talking about it to other people.  He likes to tell people how brave I am, that I'm not fine and that I am doing "very well, considering".  I am quite happy for him to talk about it but then squirm when he asks me to confirm the name of the chemotherapy drug or discuss my allergic reactions. I can't bear the heads cocked to one side and I can't bear the sympathy.  I don't like the attention and I don't want to affirm my illness.  I just want to forget it sometimes. So, I get quite narky with him.  Thus the splitting up was a good idea.

The problem was that he was going round the show the other way and telling people about how ill/brave/well I am so by the time we met up again, I was feeling all talked out about my illness and short-tempered. I was also feeling guilty and ashamed because my friends genuinely care and are being sympathetic, interested and trying to be helpful.  I am really ungrateful about their concern but I was beginning to understand how Kate Middleton must have felt when people asked her how the plans for the wedding were going...

I declared it was time to go home.

And I forgot to thank him for my boots.

I think tomorrow I shall stay at home, close the curtains and not answer the phone - bring on Mouldy Friday.

Wednesday, 29 May 2013

Hard day

My darling S died last night, peacefully, surrounded by her family.  My heart breaks for her children and her husband.

She was a friend with whom I shared a lot, as we plodded around fields on the farm, metal detecting.  She knew how excited I genuinely was when roses turned up from David Austin for my birthday.  She was interested and interestingly, though the most self-effacing woman I knew.  She could make me cry with laughter - the most important quality in a friend - and shudder with pain.  Her powers of description were legendary.  I shall miss her so.

I got the news whilst they were trying to get blood out of my port line.  All the nurses had been asking how she was, after the epic bedside stint last week.  They were upset and sympathetic.  My dear friend, A, came into the hospital to have a coffee with me whilst I waited for the clot busting drug to work on the port line.   We didn't cry but just talked about S and this and that.  It was cathartic and comforting.

Although I have been expecting it for a long time and knew that it was imminent, S's death still came as a shock and I haven't quite taken it in.  Last week, she was obviously so tired, in so much pain and a little woozy from all the drugs.  It was sad.  I'm glad I got to spend time with her and hold her hand.  I'm glad that her whole family were with her at the end.

Her charm and exquisite manners made an impact on the ward.  She was always trying not to "be a pain" and bore the monotony of 6 hours of blood transfusions with stoicism and grace.  

I have to confess S's death has frightened me.  We were diagnosed within a month of each other, first time round.  It is due to her that I went to have that first lump checked out.  There is a bond that only those who have the same disease can share and there was stuff we talked about that I would not want to share with anyone.  Just as MF said in her blog, only people who have been through your experience can begin to share it.  Facing mortality, whether assured or just lurking in the deep recesses of the 3 a.m. darkness, is something even your nearest and dearest cannot touch.

I feel bad because this should not be all about me.  It should be about S.

The day was grey and drizzly and matched my mood.  It was a long day and the nurses were really busy because of the Bank Holiday, with lots of extra people to fit in.  By the time I left at 4, the Sister, C, still had not had time for lunch.  I had been there since 9 am.

The stroppy woman in her lace-up boots who created a scene about her husband's chemo "being late" cheered us all up immensely.  She instantly became an object of ridicule and scorn.  They had been waiting for an hour and said things along the line of what was the point of making an appointment time if the hospital made no attempt to stick to it.  There was a collective sigh from our end of Lazy Boys.  She will have to learn patience.  I suggested that the lovely receptionist J make an official complaint and I would support her.  There is no room for selfishness and aggression in a chemo ward.  We are all too busy trying to stay alive and encouraging those who need support.  Her anger, which was obviously born out of fear, was misplaced, ill-judged and got her precisely nowhere.  Her husband may be ill, with cancer.  He may be the most important person in the world for her.

But for us, in that moment, we were all thinking about the one we lost today.

Monday, 27 May 2013

Guest Blog by MF. In the Pink – the story of a ‘Plucky Survivor’


In the Pink – the story of a ‘Plucky Survivor’

Charlotte recently blogged about how it is to have cancer and endure the brutality of treatment. A Facebook conversation followed, where I commented that it is “a far cry from the pink ribbon image”.
Further conversation leads us here, to my story of being a ‘plucky survivor’.

Can I tell you something? There are VERY few plucky survivors. Most of us are living with the occasional (but not all consuming) thought that cancer will find us, and that chemo, surgery and radiotherapy may just have been temporary fixes, holding it at bay for a non-defined period of time.

We all know the pink ribbon image of breast cancer: the one which gives us the smiley faces running in tu-tus and the night walkers wearing decorated bras, images of strong and courageous women not to be defeated by a mere terminal illness.  Now don’t get me wrong.  These are laudable campaigns to spread awareness of the importance of self-checking for breast changes.  They also raise much needed charitable funds to support ongoing research and offer help, in many forms, to those faced with a diagnosis. Believe me I really do feel that the efforts of fundraising campaigns and the women who walk, run, and launch themselves from aircraft for The Cause are all wonderful.

But for all the well meaning intentions, I also think that the pink ribbon is now a bit of a burden for us who have joined the ranks of the (seemingly ever increasing) number of  women who are diagnosed with breast cancer.

I was diagnosed just over 6 years ago.

So, plucky survivor? No, not at all. Far from it.

I feel damaged and afraid.

Yes, afraid that the cancer could still be lurking in my bones, liver, lungs or brain.

What, you say? After 6 years surely I’m ‘in the clear’?

A friend who was diagnosed 8 years ago discovered that hers had spread to her bones 18 months ago, it is now in her lungs and liver. 

In the clear? Who knows.

Chemo damaged bits of me that I did not know could be damaged. It stopped my ovaries from functioning, plunging me into menopause at the age of 38.  Combine this with the damage it did directly to my bones and I have the start of osteoporosis.  My gums are damaged.  My digestive system has never been the same.  My mental health is damaged.  The speed of diagnosis one minute, mastectomy the next, then being bald a few short weeks later, all contributed to PTSD.

And yet I walk around ‘being positive’, nodding when people ask “But you are ok now aren’t you?” because they don’t know how to deal with me when I say "No" or "I don’t know". Everyone wants me to be ‘positive’ . 

And yet, every woman that I have spoken to who has been through this, shares this same fear and lurking anxiety. We admit our fears to each other and that is it. We feel relieved when we find someone who has also been though this. We can share our true feelings without worrying that we are, as Charlotte puts it, “frightening the horses”.

So do we plucky survivors maintain the facade in order to shield ourselves from having to deal with the reactions of those who want it all to be rosy, and pink? Because we won’t like them to worry or be as afraid as we are? 

We play the role of ‘plucky survivor’ and run marathons, walk overnight and jump out of planes to raise funds in hope that, eventually, research will find a way to halt the cancer without the damage, to stop anyone else from ending up as we are.

And yet, as Charlotte said, this backfires, as every woman who goes through treatment has the plucky survivor image to live up to. We go through treatment thinking "Ruddy hell!  This is supposed to be bearable.  Why can’t I just put my head scarf on and go out like all those other women?”. And our families, ill prepared for the reality of a brutal treatment that takes it’s toll physically and mentally, are left with both types of scars.  

Let’s stop hiding behind pink ribbons pretending it is all ok and be honest; and then maybe, just maybe the pressure to be plucky will fade, and we can stop feeling inadequate for not living up to the sky diving marathon running image.

It’s time to talk. 

** I am immensely grateful to MF for sharing.

Sunday, 26 May 2013

Compare and contrast


I have been ruminating over the Risk Factors for Breast Cancer over the past couple of days.  They are patently contradictory in some areas and, I fear, parent blaming in others.   I thought I would count the ways I could blame my parents for my breast cancer - not that I do, of course, because that is patently ridiculous.  I have highlighted these in blue.


  1. Not having enough children. Ideally we should have 6.5 children.
  2. Early menarche. If we could have just delayed this by 5 years, that would have reduced our risk. Apparently, we get our periods earlier because we are fed better as children.
  3. Having our children too late, although no ideal age specified
  4. Not breastfeeding for long enough 
  5. Later menopause 
  6. High insulin levels in post menopausal women not taking HRT.
  7. 66% increase risk in women taking HRT 
  8. Increase in risk of women taking oral contraceptives 
  9. Dense breasts (an inherited characteristic)
  10. Previous breast cancer 
  11. Previous breast disease
  12. Genetics and family history of related cancers
  13. Weight. Post menopausal, you need to be "lean" (BMI 21 - 25). Pre menopausal, it helps reduce risk if you are obese. 
  14. Not exercising enough (150 minutes of "moderate" exercise per week)
  15. Alcohol 
  16. Diet - all fats seemed to contribute. Soya seems to be good for you (or less risky than saturated fat?)
  17. Shift work
  18. Higher birth weight, longer labour, older mother oestrogen in the bloodstream 
  19. Height (17% risk for every extra 10cms over average.  I am close to 20cms over average)
  20. Chest X-rays between the age of 10-29
  21. Ionising radiation exposure 
  22. Smoking
  23. Hyperthroidism
  24. Anti-hypertensive medication

It seems to me that my parents shouldn't have been so tall, had me, the only girl, last, fed me so well, had children at all with their familial history of related cancers, fed me any fat and my mother certainly shouldn't have looked after herself so well when pregnant with me (12lbs at birth).

No one has suggested (and I venture to say, would suggest) that I should in any way hold my parents accountable for my disease.  Nor has it been suggested that I should "take the blame" in any way. What has happened is that a variety of factors, mostly beyond my control, have accumulated in a mess of biological and environmental factors to make me ill.  Who is to say that, had I been a lifelong teetotaller, that I wouldn't have breast cancer now?  Or if my mother had married someone shorter?  Or if I hadn't had pneumonia and had to have chest X-rays?  Or had had more children?  Or no children?

My life story is no one else's and my path into this disease is unique.  It is not the same as my friend, R, or my friend, D, both of whom are of a similar age and both of whom also have breast cancer.  I believe neither of them would blame their parents, their upbringing, their inherited breast density or not being obese.  My clinicians are interested in my history but very much as an aside.  I have filled in questionnaires and sent off blood samples.  However, this is very much secondary to my treatment.  Tackling the cancer with operations, chemotherapy and radiotherapy is the number one priority for my clinicians.  The "why" is just not that important and can wait.

Julie O Toole wrote a blog 2 years ago that still haunts me now.  In it, she describes listening with mounting horror, to clinicians discussing cases of anorexia nervosa and their treatment of them.  

Or take the story we heard of "an anorectic [sic] person" whose underlying problem was that she identified with her father's cachexia (wasting) as he was dying of cancer. She "recovered nicely," we were told, once this underlying "reason" for her illness had been uncovered in psychotherapy. Groundless claims such as "neglectful parents and bonding disturbances between mother and child," where you could "actually see why the patient became anorectic[sic]," were offered in place of clinical evidence. Lastly, we heard of a patient who was "exquisitely on death's doorstep," having gained no weight after four years of psychotherapy.

Imagine if I, or R, or D, had to find out what "caused" our breast cancer before we could receive treatment.  I doubt whether any of us would make 4 years of talking about it.  We would all certainly be "exquisitely on death's doorstep", being the age that we are, with no chance of recovery.

So what are the Risk Factors for Anorexia Nervosa? 


Risk factors
  1. female sex, 
  2. infant feeding problems, 
  3. maternal depression symptoms in early childhood; and 
  4. a history of under-eating during early childhood. 

Protective factors were 
  1. high self-esteem in late childhood and 
  2. higher maternal body mass index.
Prenatal events or gestational age, birth weight, separations from the mother, childhood emotions disorders, parenting style, and sleep problems, did not play any role in the later development of AN.  The authors note that the main limitation of their study is the self-report history of AN, and accept that under-reporting and over-reporting might result in some bias.

Prevalence, Heritability, and Prospective Risk Factors for Anorexia Nervosa Cynthia M. Bulik, PhD; Patrick F. Sullivan, MD, FRANZCP; Federica Tozzi, MD; Helena Furberg, PhD; Paul Lichtenstein, PhD; Nancy L. Pedersen, PhD


I have to admit to chuckling about higher maternal BMI.  This ties in with being obese before menopause as protective against breast cancer.  Anti-obesity idiots, please take note.

Is it time for the Eating Disorder clinicians to learn about treatment protocols from Cancer clinicians?  I certainly think so.


Let's get physical

Yesterday was a really bad day.  I woke with a headache in the night that felt as if someone had gouged my eyeballs out.  The pain in my shoulder was nagging and shooting and, at times, really sore (typical Brit understatement there!).  It is often referred pain, so feels like someone has put broken glass in my rotar cuff.  GAH.  My lips were dry, my throat scratchy, my internal thermometer is broken so I was cold to my bones. I couldn't get comfortable.  My pillows had magically "gone African".   I couldn't feel my feet.

I also had what is euphemistically called a "runny tummy" which meant I was hungry and gurgly and all round mouldy.  I was also inseparable from a bathroom.  I was tired, cross, dehydrated, in pain and had low blood sugar, which meant I could out-grinch the Grinch.

The family chose the option of love, panic, sympathy and going off to see the Great Gatsby, leaving me to work through the physical and psychological pain by cleaning out the kitchen cupboards and throwing away loads of out-of-date jam.

By the time 7 pm came, I was so cold and tired that I collapsed on the sofa with Ugg Boots and hockey socks (Thanks for the tip, E!), two cashmere jumpers, a Schoffel and the girls' sleeping bag that is supposed to withstand temperatures of -10.  The mobile hot water bottle, AKA Pirate, snuggled up too.  By 9 pm, I was warm.



What is so counterintuitive about all this mouldiness is it means the chemo is doing its job.  It is crunching its way through the bad stuff, taking no prisoners.  It is also crunching its way through some of the good stuff, hence the intense physical discomfort.

For all my friends and readers who are recovering from an eating disorder, my sympathies.  For all those parents and carers who are helping their loved ones through the hell of refeeding, I wish I could bottle my oncologist for you.  When I moan and complain, she just looks at me as if I am slightly demented and tells me that this is "all perfectly normal" and I believe her.  She will then gently pat my hand and distract me by talking about something else.

This morning, I feel fab.  I slept like a log, took the dogs for a long walk and took photos of our barley, which is now on ear, meaning harvest is a matter of weeks away.  I am NOT going to try and outdo Onemoremum's cleaning routine or my dear friend, C, who cleans her hoover after use, but out-of-date tins BEWARE!  I'm coming for you......

Friday, 24 May 2013

Conflicting advice

On our way to a party last night, I was phoning a friend who has just been diagnosed with breast cancer.  This is the second friend this week.  Is it just that we are better at early diagnosis or is it that something is bringing on breast cancer earlier in our generation?  

Let's investigate shall we?

The risk factors for breast cancer are:


  1. Not having enough children.  Ideally we should have 6.5 children and breastfeed them all for 24 months.  (Worrying about the .5 of a child, personally but hey, that's statistics for you!)
  2. Early menarche.  If we could have just delayed this by 5 years, that would have reduced our risk.  Apparently, we get our periods earlier because we are fed better as children.  
  3. Having our children too late, although no ideal age specified
  4. Not breastfeeding for long enough (2 years per child)
  5. Late menopause (45 ideal age apparently!  If you are over 45 and not menopausal, get on with it!)
  6. High insulin levels in post menopausal women not taking HRT.
  7. 66% increase risk in women taking HRT 
  8. Increase in risk of women taking oral contraceptives (You should be having more children instead!)
  9. Dense breasts (Are you calling my breasts stupid?)
  10. Previous breast cancer (Duh!)
  11. Previous breast disease (Keep your proliferations and hyperplasia under control, people!)
  12. Genetics  (Yeah, yeah, blame the parents)
  13. Weight.  Post menopausal, you need to be "lean" (BMI 21 - 25).  Pre menopausal, it helps reduce risk if you are obese. 
  14. Not exercising enough (150 minutes of "moderate" exercise per week)
  15. Alcohol (apparently, if you consume alcohol, you are more likely to have higher sex hormones in the bloodstream?)
  16. Diet - all fats seemed to contribute.  Soya seems to be good for you (or less risky than saturated fat?)
  17. Shift work
  18. Another "blame your mother's oestrogen" higher birth weight, longer labour, older mother oestrogen in the bloodstream - naughty naughty Mum.
  19. Height (SO much you can do about that - starve that child so it doesn't grow?)
  20. Chest X-rays between the age of 10-29
  21. Ionising radiation exposure (including mammograms!!)
  22. Smoking
  23. Hyperthroidism
  24. Anti-hypertensive medication


So, in order to have avoided breast cancer, I should have had 4 and a half more children, at an earlier (unspecified) age, been less well nourished as a child so my menarche was later, breastfed for a total of 13 years, had a earlier menopause, taken HRT, not taken HRT, not had breast cancer before, changed my parents, been obese, become lean (whatever that is), exercised more (or more moderately?), not drunk, never eaten any kind of fat, not worked at night,  not been so tall, not had pneumonia (necessitating a chest X-ray) or a mammogram, not smoked and my mother should have been younger, had smaller children, with a shorter labour.

If only I'd known this stuff before...........

Wednesday, 22 May 2013

Smile

Weird things about chemo that no one tells you or you don't hear.

PART 1 Rinse and Repeat

Oral hygiene will probably be part of the Chemo 101 that you completely forget or don't bother to pay attention to.  You clean your teeth, right?  Morning and evening?  And go to the dentist regularly?

Mouths are a very easy infection site.  A tiny cut can turn into a bit of a disaster quite quickly.

Here's the bits you didn't hear in Chemo 101.

Go to the dentist before chemo, not during.  Dentists and hygenists are all very good but they don't seem to understand that any small cut in the mouth can be very dangerous when having chemo - infection site that you regularly swill around with food and drink.  Show me an oral clinician who can resist using that pointy thing and tutting about plaque or cleaning your gums with that buzzy hadron collider toothbrush thingy.  There is something about the profession that attracts perfectionists and, right now, that may not be what your teeth, gums and tongue need.

Buy an electric toothbrush.

Buy SOFT heads for the electric toothbrush.  No maximum impact hadron collider heads please....

Clean thoroughly but gently.  See above for blood, cuts and infection.

Don't poke around with those packs of things to get bits out from between your teeth.  Or use toothpicks except with extreme caution.  See above for blood, cuts and infection.

Make friends with Corsodyl.  Sloosh a lot.  Preferably every time you pass the bathroom or keep a bottle in the kitchen/handbag for after you have eaten/drunk something.  See above for blood, cuts and infection.

Be aware that slooshing a lot is a good thing but that mouthwash can stain your teeth.  Yup, that's right, people.  The thing that they never advertise but may be in the small print if you have a magnifying glass.  Mouthwash is well know by our chemo team for staining teeth.

Which is annoying as you can't go to get your teeth smartened up by dentist/hygenist - see above for blood, cuts and infection.

On the subject of food, beg, borrow or steal a friend like Christine, who arrives on a Tuesday afternoon with the surprise of the week supper for Wednesday nights.  This week was lamb stew (delicious and served with microwave rice for ease!) and chocolate pie.

After chocolate pie, I break all rules and wait at least an hour before slooshing.  Some things are more important than yellow teeth and savouring Christine's pie is one of them.  

Try this on steroids.

IU sent me a link to this today.  THIS IS ME - or at least, it was until I started treatment and steroids.  Now, this is amplified on Wednesdays and Thursdays so I rarely make it till lunchtime without at least one "Chaos" moment.

Dedicating this to my brave friend, HM and her children.

Another Wednesday.....

A long day today.  I had to be there by 9 to have a blood test, which proved a nightmare as my line wasn't working properly.  In the end I got stabbed in the arm.

Whilst waiting in the oncology reception, my dear friend S came in for a blood transfusion, guided gently, gingerly, in her wheelchair, by her loving husband.  In my usual bossy way, I took them through tot he Day Unit, checked them in and dispatched them to a bed.  I then went in to my oncology appointment - good news - apparently, according to my blood tests, I have never been in such good shape - and back to the Day Unit to sit with S.

I spent a lot of time shooting the breeze with her and her HWISO.  I told them about our weekend experience of the extraordinary Weird and Wonderful Wood Fair, at Haughley Park.  Is it only me that comes over all funny peculiar at the smell of patchouli oil?  We talked about the children and about exams and how no one enjoys school anymore.  We gossiped about friends and all the time, I held one hand and her h held the other.  Sometimes our eyes met over her dozing form and I wanted to cry.

My oncologist came to see her.  In a bizarrely English way, I formally introduced them.  

"This is K W, my oncologist," I said.  "This is my very dear friend, S.....and her HWISO"

What was I doing?  Did I expect them to shake hands and start talking about the weather?  Probably.  Preferably.

S was very drugged up and very tired.  It is a matter of weeks now.  I was in the peculiar position of trying to gauge whether they wanted to talk about her dying or whether they just want a distraction from the terrible reality of death?  

I opted for the latter option.  I am SO English.

I told them the story of my mother being buried in a wicker coffin.  She was a great fan of Fortnum & Mason's hampers in her lifetime and her house had many wicker hampers with F&M emblazoned along the side - we all have at least one of varying size.  My brothers and I got church giggles at the graveside, when one of us (I suspect T) suggested we should spray paint F&M on the side of the hamper she was being buried in.  It made us smile and would have made Mum laugh.

I slept a lot this afternoon and when it was time for me to leave, I went and tenderly kissed S's hand and her forehead and told her how much I loved her.  She smiled and squeezed my hand, without opening her eyes.  I was glad she didn't wake up to say something because I want her to save every ounce of strength to talk to her HWISO and her children.

Staring death in the face is very sobering.  I admire the staff on the MacMillan ward even more now.  They face it every day, with cool, calm professionalism.  They also manage kindness and, most importantly, a bit of humour.  Bless them.

Tuesday, 21 May 2013

Wet or dry?



I talked to AM on Facebook last night.  She said

"I see a new blog from you and open it with a mixture of trepidation and anticipation and then alternately cry and laugh as I read them."

This one's for you, A, strictly for laughter only!

Having just had my bi-weekly shower and washed my thinning hair, I found myself using the shampoo for "Long Luscious Hair".  I then used the conditioner for the same.  My hair is neither long for luscious though, as per the photo, it looks quite good when blowdried upside down.  Should I be using this shampoo and conditioner?  Will they be upset when they are squeezed onto the thin, old lady hair, rather than the long luscious locks they are expecting?  Will they go on strike and NOT WORK under the Trades Descriptions Act or some such?  Am I wasting my time washing my hair with the WRONG shampoo? (Insert smilie face emoticon!)

The fact that I still have some hair worries me.  Does this mean the chemo is not working?  Over 3/4s of my hair has fallen out and will be attested to by the lovely Lynne.  Sometimes, she follows me round with the Dyson ON to catch the clumps that fall and has been known to attack my shoulders with the same, as I look like I have a rather mangy fur collar on!  But I still have a few bits hanging on.  Did they give me placebo chemo last week?  Is it just that the chemo is too busy elsewhere to attack my hair?  Will I ever need the false eyelashes I bought "just in case"?  

My second dilemma of the morning was how should I dry my hair?  On the one hand, water irritates me and an itchy neck is murderous.  But, if I blow dry it, will I blow out some of the few remaining strands that are hanging perilously in there?  Is wearing a towel round one's neck for the morning acceptable?  Should I pat it gently or rub vigorously with the towel?  How do you apply moisturising cream to the neck with water running down it?  Arghhh.

Decisions, decisions.....

Monday, 20 May 2013

In the pink

A comment from MF on my Facebook page after my last, slightly brutal blog, raises a question:

"It's a far cry from the pink ribbon image isn't it?"

Apparently, Breast Cancer is not viewed as a "serious" cancer.  All the pink ribbons and midnight walks have turned it from being a life threatening disease with a quarter of patients dying within 10 years to some fluffy bunny "beatable" disease that is not as serious as some other cancers.  Really?

It is something we face in the eating disorder world too.  Anorexia Nervosa is viewed as the No 1 serious eating disorder.  Bulimia and BED are viewed as not so serious.  This is all wrong.  All eating disorders are lethal and none is more "serious" than others.  I think that AN is viewed as the most serious because it is very visible and it is not so "messy" as BN or BED.  The general public view AN as "not eating"(showing supreme self control - let's all clap!!!) whilst BN is viewed as "throwing up" and BED (if anyone has ever heard of it!) is viewed as "greed" (showing supreme lack of self control).  They all still kill and maim and ruin lives, in terrifying numbers.

G's godmother, C, came round to drop off a birthday card on Friday and said she was finding my blogs about cancer treatment really helpful because "one doesn't like to ask too much".  I have been pondering whether this is because we are English - stiff upper lips and all that - or because the clinicians don't want to "frighten the horses" in case we bolt (which would really skew the "survivor" numbers).

However, I don't think the sugar coating is a purely English thing.  I suspect it is more a reflection of our society.  I suspect  the mystery surrounding the reality of cancer treatment and all it entails, is a symptom of our "reality", our Disney Princess Happy Ever After fairytale, that we are fed from an early age.

MF commented further that maybe we are more "comfortable" with the "plucky survivor" thing.  I disagree.  Whilst hope is important, it is easily dashed when comparing yourself and your discomfort with those shining beacons, who have beaten all the odds and are now running marathons or countries, sky diving from outer space or sailing single handed to Mars.

The reality is we are herded like cattle to the slaughterhouse, through a succession of corridors and machines and tests, having our hands held by kind but detached staff, swallowing pills and holding up our arms for needles without a murmur.   We are told there is always hope and that medical advances are being made every day.  We are somehow made to feel that it is up to us and our duty to get better that we, too, should find it in ourselves to be a plucky survivor.

No pressure then?

Sunday, 19 May 2013

Fortitude

I have had a lot of feedback on my blogs on cancer treatment.  As usual, I have made light of much of the horror.  However, my dear friend, LC, put some things in perspective for me.

"In my view, in the last 18 months the doctors have poisoned me, cut me and burnt me repeatedly to rid my body of cancer. My job was to be passive and patient."

This is a pretty accurate description of cancer treatment as it stands.  The doctors and nurses are lovely people, kind, sympathetic and gentle.  The treatment is not.  

The operations are brutal - removing lymph nodes is real cut and paste surgery.  There is an urgency to move you on as fast as possible to the next phase of treatment.  Most breast cancer patients are chopped about in the armpit as well as the breast.  It precludes hugging, opening tins and stroking the dogs for a long time.  Wearing a bra (recommended) is difficult.  Post op bras tend to be as exciting as maternity bras - just the thing you need, when your femininity has been stripped bare by a surgeon's knife.  (For the record, Spanx bras have no seams and you step in to them - I highly recommend them).

Chemotherapy (as discussed earlier) is poisoning in strictly medicated doses, that keep you alive but destroy your immune system, mess with your platelets, give you nausea, anaemia, an ulcerated mouth, bruising and rashes.  The fatigue is indescribable.  The hair loss is immaterial in the grand scheme of things, but the humiliation is psychologically hard to bear on top of all the other stuff.  More side effects can be found here.

Radiotherapy is deep tissue burning, cunningly disguised for the first few sessions, as the burn is so deep under the surface, the effect is not visible for  a few days.  The fatigue comes out of nowhere and hits you like a sledgehammer.  You are not allowed to wash with anything other than baby soap and no deodorant for the whole of your treatment.  Dehumanising?  I think so.  There is nothing like being laid out topless on a slab of stainless steel, alone, in a cold room, whilst some James Bond type machine whirrs and hums over you.

It is, effectively, torture.

I read a heartbreaking article by Lord Saatchi the other day.  I agree with him.

Passive and patient may be the prescribed reaction.  Violated, burnt and mentally scarred is probably closer to the truth.  Not just for the patients but also for those who support and love them.

Friday, 17 May 2013

Keeping my lid on...

Thursdays are good days.  I spent a wonderful, happy day yesterday with G, buying a prom dress and then going into Cambridge to have lunch with E, followed by stocking up on essentials (8 Hour cream) and buying myself a pair of Vans - quite the most comfortable shoes ever.

Fridays are my mouldiest day.  The high of Wednesday's massive steroid injection has completely worn off and the chemo is going full tilt as it crunches through the cancer. 

The hives are back - hence the 8 Hour cream - so I am on anti histamines and am up to 7 litres of water a day, to keep them at bay.  The weather is less humid, so I am more comfortable than a couple of days ago and I am so covered in moisturiser (Dr Organic Aloe Vera - thanks Mel - and 8 Hour cream) that it was quite difficult to get my knickers to stay up this morning!  

Sadly, the return of the hives means that my tolerance to water, carefully built up in 30 second weekly increments over the past 18 months, has disappeared.  I am no longer able to enjoy a nice warm shower.  I had even built myself up to having a 5 minute warm bath, which was heaven after 18 months of not being able to, but that too is now impossible.  Back to strip washing at the sink, just like I did at boarding school and smothering myself in deodorant.

The pain is back on Fridays.  It is a good pain, which is a weird thing to say.  I like to think of it as the pain brought about as the chemo fights the cancer and is winning.  At times, it feels like the hundred years war or melting a iceberg with a match.  It grinds and creaks with the occasional debilitating, head ringing sharpness that takes the breath away, when I move in a unaccustomed way.  As I have been pretty crippled by a "bad shoulder" for six months now, there are a lot of "unaccustomed ways" - like reaching out for a glass of water in the middle of the night - so the reminder that I have cancer is there, even when half asleep.

Friday is a day that depression tends to come in waves.  There is much to do, but my energy is low and my sensitivity button is on Defcon 5.  That means that the family creep around, as the residual aggression from the steroids still lingers, without the corresponding energy and enthusiasm.

Fridays are the days when I am best left to fester, spreading my greenish powder over the strawberry jam of life.

Thursday, 16 May 2013

Impressions of the chemo outpatient ward

It was busy yesterday.  I didn't get to sit next to M, the lovely lady in her 80's who has blood transfusions every Wednesday.  She is tiny, white haired, bird like, exquisitely polite, charming and a favourite with all the nurses.  She gets brought in by her lovely, round, jolly husband every week and dropped off.  Her treatment takes about 6 hours and I tend to jump up and down getting her a drink (she likes orange squash) and showing her funny pictures in the paper - we particularly like the one of Boris on a horse last week.  She likes to sit by the window and watch the comings and goings from the Rainbow Ward (the children's ward) which is next door to us (a particularly strange piece of planning?).

In the end I sat next door to the very beautiful J.  J has taken the step of shaving off all her hair and her huge blue eyes are magnified a thousand times.  She looks like Erin O Connor.

J is 29.  Her Mum sits with her all morning and her dad drives 5 hours from Blackpool to be with her on chemo day for the afternoon and evening.  She is facing a long road - her reconstructive surgery won't be until this time next year.  In the meantime, she is facing life as a single (her boyfriend dumped her after the first bout of chemo - bastard.  Making voodoo dolls!), lopsided, scarred, young woman who has had a really shitty diagnosis and an even shittier treatment regime.

I looked at her parents (as I nagged her to eat!  Old habits die hard) and saw two loving parents, united in grief and fortitude.  For the most part, they just sat there, uncertain of what to say or do, except take huge interest in her treatment regime and tell her she was beautiful.  My heart broke for them.

I did my usual "entertaining the troops" bit.  We found common ground in the shortcomings of the Daily Fail.  The mum works with youth offenders locally and her dad is retired.  We talked a lot about dogs.  They have 5!  We generally shot the breeze and I banged on a lot about the importance of nutrition.  They had been to see one of those charlatan unregistered nutritionist.  I did have to laugh about the "method" of diagnosis.  Apparently, vials were placed in the tummy button and then the right arm was raised.  If there was no resistance, it apparently meant the patient was "allergic" to whatever was in the vial - tuna, oranges, dairy - yeah right!  My blood turned cold but luckily, they had seen through this particular piece of "money for old rope" and took no notice.

I did 'fess up to my particular interest in nutrition and did point out that J might need to "grow" her behind over the next year for the reconstruction.  She wailed at me "Great.  Bald.  Single.  AND Fat.  Anything else?"  I wanted to cry.

Monday, 13 May 2013

So what's it like having cancer


One piece of advice I was given at the beginning of this all was from M and the Fairy Blogmother:

Don't Google it, they said.

I haven't


Therefore, I think it is emotionally worse for those closest than it is for me.  I am caught up in the whole treatment timetable, the chemo every Wednesday, knowing the nurses and calling my oncologist by her first name.  I have all the pills and the potions and the right to stay in bed, watching the iPlayer every morning if I want.  I do wake up at 3 am and think that this is not fair and why me.  Instead of becoming wrapped up in all the emotional wreckage, I turn on Radio 4 and listen to the World Service for the rest of the night.  (I am sure all my psych friends would have something to say about this but I really don't want to know!)

It is worse for HWISO.  Much worse.  He has Googled it.  He wants to fix it and fix it now.  Sadly, he is not qualified and, whilst I get his frustration, I don't have his energy.  I do understand his intolerance that I am not the most important person in the MacMillan Day Unit, or the most critical on the oncologist's list and I understand his frustration that no one understands how important I am to him and that he cannot bear the idea of life without me.  I know he is prepared to sell everything he owns, if he can just get me fixed.

And I love him for it.

It is tough for my girls.  Really tough.  And it is NOT FAIR.  It really isn't.  Being a teenager is tough enough, without me being ill and weak.  They are being so loving and supportive that it breaks my heart but I know that they just break down from time to time.  It is almost too much for them to bear.  I wish I could take it away from them.  So does HWISO.  

Physically, it is hard.  It is hard to know there is something alien in your body.  It is hard to have the pain of an operation.  It is hard to have pain. It is hard to have to be so careful about going out and coming into contact with people who might be infectious.  It is hard to have to pay attention to every creek and groan.  It is very difficult, for me, to be a hypochondriac.  I find it hard to take drugs and have a fuzzy head.  I hate the attention.  I try and sleep through the afternoon when having chemo so no one asks me how I am.  (For the record: uncomfortable and cross!).  I hate getting weak and tired but I am scared of pushing myself too hard and collapsing again.  My body is not what it was and is fighting on two fronts: the cancer and the chemo.  It takes a lot out of you.

Honestly what's it like having cancer?  It sucks.   

However, I have discovered that life goes on, even if you do have cancer.  The family needs love and attention.  The dogs need love and attention.  The kitchen floor needs attention.  The bills still arrive and need paying.  The farm needs discussion and planning.  The emails and letters need answering.  The washing still needs sorting.  The shopping needs doing.  Life needs living.

I have changed though.  I have stopped stressing the small stuff and started delegating the big stuff.  I received a particularly spiteful letter in the post this morning.  In the old days, I would have got upset and thrown a hissy fit and got overly stressed and emotional.  Today, I called my great friend who is a solicitor and talked it over with her.  She made a plan.  I like plans.  I don't have the energy for making plans just now.

I'm too busy fighting cancer.


Thursday, 9 May 2013

So what does chemo feel like?

Another narcissistic post....

After a lot of interest and people obviously wanting to know, but too scared to asked, what does chemo feel like?

Well, scary to begin with.  I mean, who, voluntarily, sits there and lets other people, however nice and cheery they are and whatever uniform they are wearing and however long their title is on their NHS identity card, inject poison into them?  

The chemo process takes a long time (minimum an hour).  It is not a "James Bond" syringe in the buttocks type experience.  You are hooked up to a machine that drip feeds poison into your system via a needle and tube that you have let someone put in you without extreme resistance.  You know it's poison, partly due to the fact it says so on the bag and partly due to the fact that the staff never come near you without protective clothing. 

This is no "umbrella in the bus stop".  

I am not a drug taking person.  Pre-cancer, I had to be seriously debilitated to take a paracetamol (although I do confess to eating those orange flavoured "children's aspirins" when young).  Now I take a pill when I am in pain.  So far, in this experience of cancer, at the worst post op, drain infection, serious pain days, I have taken Ibruprofen and Paracetamol every 2-4 hours, highest dose allowed.  I have been on Tramadol (which gave me a sort of St Vitus dance, so had to stop that), Co-Codamol which made me  very ill, morphine, which helped the pain but messed with my head big time and I DID NOT LIKE, prophylactic antibiotics, anti-nausea medicine (two types) and long term low dose steroids.

Oh yes, and the chemo every week

I am actually pleased to say that my liver (and no, I haven't touched alcohol since January - my mum's funeral) decided that enough was enough two weeks ago and my ATL (whatever that is) rocketed to 247 (which is bad, apparently?).  So I came off everything, including the chemo, for a week.  Once I was under 100 (which took 7 days), I was back on the chemo and anti nausea (and all those injections before chemo) and have taken a paracetamol for a particularly bad hay fever headache a couple of nights.

I also suffer badly from dehydration and have learnt that *I* need to drink between 5 and 7 litres of fluid (tea and water in my case) a day to keep serious hives at bay.  I have had two small outbreaks (hands and feet) and have to remember that sweating is seriously detrimental to me, so have been wafting around in loose fitting clothes trying to emulate that 70's Cadburys' Flake advert.

My friend, Tiffany, told me to visualise the chemo as a kind of huge digger crunching up the cancer cells and my friend, Cathy, told me that this is what is actually happening and why my hair is falling out.  Both incredibly helpful visualisations - thank you.

My friend, Christine, appears every Tuesdays with pies (she is dead good at pastry) and cakes which she has made herself so Wednesday evening supper and middle of the night steroid binge are sorted.  As I get better, the steroid binge gets earlier and I could be found at 3.45 am this morning, back in bed with my 3 thermoses of tea and Christine's Tiffin and Georgie's secret stash of Breakfast Biscuits and Keeping Britain Alive on iPlayer.

Am I going to die?  Well, yes - everybody dies.  Am I going to die from cancer?  Statistically likely sometime.  Do I want to die?  There have been a couple of times when the pain has been 9-10 from the operation and I thought I would not be able to bear it and be better off dead.  HWISO talked me out of that particular scenario and the doctor gave me morphine, so, just now, No.  Also, as I have sorted out my life, done my will, my letter of wishes, written my letters to the children and HWISO, done the farm Year End, found someone to take over the paperwork for the VAT and the wages until I am better, tidied the house, organised a twice weekly grocery home delivery, booked Emily's driving test, got a gardener in once a month, got into a major routine with the lovely Lynne who comes three times a week to sort out the house and recorded all the Grand Designs I want to watch, the likelihood of me popping my clogs anytime in the near future is pretty remote.

Does it make it any easier to watch the drip drip drip every week?  Probably not but, at the moment, I am feeling really rather well.  The hole is shrinking rapidly, the weekly routine is now established and the sun is out.  Mustn't complain.

So what does chemo feel like?  Counterintuitive.  Weird.  Disempowering.  Scary.

The upside?  Kindness from too many people to mention: the parcels, the food, the cushions, the throws, the wash bags, the mad postcards (Colleen!), the cards, the emails, the Skype calls, the phone calls, the bath and skin stuff and the love from so many.

I only wish I could set up the same system for my many many friends who are going through the hell of helping their children overcome an eating disorder.  

Maybe next year?

Wednesday, 8 May 2013

So what's having chemo really like?

I read somewhere that illness makes one narcissistic.

Today is Wednesday, chemo day.  I get up early, make tea and usually watch Keeping Britain Alive in bed, with a handful of biscuits.

By 6.30 I am contemplating my shower, being given my instructions for the day by G and texting E to see if she is coming home, loading the dishwasher and the washing machine and tidying up, as I will be out for most of the day.

I have breakfast, pack my bag with any books I have read and spare magazines to drop off in the MacMillan Day Patient Unit and pack up some food and snacks.

9.30 we set off for a blood test at 10.00

I now have a PICC line so no need to keep my hands in gloves so they can find a vein.  It is a weird feeling as it sometimes itches on my chest and you encounter a metal plate instead of 48 year old, slightly sagging flesh.  The bit in my neck is the most irritating as, if you have your head at the wrong angle, it feels like you have something stuck in your throat.  As I said, weird.

My PICC line was put in by the lovely Rupert, an anathewhatsit.  Rupert is charming, clever, gentle and reassuring.  His only drawback is he looks like Mr Bean.  Really.  He made me laugh so much when he said that if I was nervous about having this done by Mr Bean, imagine what some parents felt like when he carried away their child.....

The blood is drawn through my line, which involves a very nice nurse sticking a very short needle (phew!) into the metal plate in my chest.  There is then a bit of fiddling to make sure we have got it in the right place and various tubes are attached, blood is drawn and I am then sent off for a couple of hours whilst the results come in.

The great thing about the Day Unit is that you get to sit in a Lazy Boy chair, with a pillow and we have a tea lady who comes round every couple of hours with an old fashioned tea trolley.  I settle myself down, marking my territory by spreading my bottle of water, various food parcels, newspaper, phone etc on the little table beside me and prepare for chemo.  It is very important to drink lots and eat to keep your strength up.  Besides, there is little else to do except listen to the "chemo chorus" of the beeping and buzzing of the chemo machines.

What happens first is I get four massive injections - steroids, antihistamine, anti sickness and some other anti allergy stuff and then they attach the bag and start the chemo (see through this time, not red like last time).  I then have about an hour and a half of just sitting there, followed by a flush through, detaching of all the tubes, a sticking plaster over the tiny hole and am sent home (via an emergency run for the loo!).

I feel fantastic for the next 36 hours.  That'll be the steroids then.  Friday evening and Saturday finds me a bit mouldy, snappy, tired and generally.. well, mouldy.  By Sunday I have begun to perk up, Monday and Tuesday tend to be good days and then Wednesday comes around again and we start all over again.

Weirdly I have felt progressively better as the chemo has gone on, rather than worse.  My only mimble is that my hair is nearly gone and one does feel naked without hair....

Tuesday, 7 May 2013

Speechless

I have been trying really hard recently not to "diss" the NHS, especially after watching Keeping Britain Alive but something really needs to be done about Mental Health care.

I heard today about a severe and enduring anorexia nervosa patient, with known suicidal tendencies, whom the clinical team were seriously worried about and were trying to get an IP place for.  The patient was assessed today by the CMHT, BY PHONE.

Seriously, people, someone phoned the patient at home.

Now, don't fall over with shock, but the serious anosognostic patient said they were fine.

So, that's that then.  Crisis over.  GP and rest of clinical team can rest assured that the patient has been assessed and that there is no crisis and no further action is required.

I just despair.

Please sign this pledge.  Let's get proper care as standard.

Sunday, 5 May 2013

Whacking moles the Irish way

It was inevitable that I was going to quote my great friend, Irish, after a thread on the forum.  A parent had become distressed about a clinician's advice to not push for more weight gain at the moment, as the patient's anxiety levels were going off the scale and there was an immediate likelihood of self-harm.

There were two points raised: the first was about BMI in adolescents.  I am not going to have another BMI rant and have was gently reminded by the Fairy Blogmother that, until someone comes up with an alternative, BMI is the best tool we have got.  (I still stand by my King of the Castle position that any clinician who uses JUST BMI to define recovery or as a measure of mental/physical health is an Idiot!).

The second point was the anxiety that was threatening not only the patient's sanity, but also her physical wellbeing.  How do you tackle the whole thorny problem of a patient having more than one dangerous problem at the same time and one is interfering with the other?  Especially when both problems could be life threatening and cause physical harm that could be long lasting?

(Forum thread for those who want to read it)

DBT seems to have many answers to this particularly thorny problem and Irish explains it so well.

One of the problems with the Symptom Whack-A-Mole Syndrome (hereafter SWAMS) is EXACTLY that "what do we do first?! o_0 thing. I think a common thread here is how INEFFECTIVE whacking at which ever random symptom happens to be (percieved to be) worst right now, turns out to be in the long run.

Marsha Linehan (developer of DBT) started with a clientele of patients who were suicidal, chronic and almost all had multiple diagnoses. These were women who'd endured years of SWAMS, so she developed a formal hierarchy, allowing the clinical team to focus on a few things, then move to the next issue, & etc. Instead of endless random whacking at moles as they pop-up repeatedly, you systematically target the WORST offending mole (or two). Once that problem is manageable, you target the NEXT mole.

The standard hierarchy is:
  1. Decreasing suicidal behaviors.
  2. Decreasing therapy interfering behaviors.
  3. Decreasing behaviors that interfere with the quality of life.
  4. Increasing behavioral skills.
  5. Decreasing behaviors related to post-traumatic stress.
  6. Improving self esteem.
  7. Individual targets negotiated with the patient.
Suicidality is ALWAYS ALWAYS ALWAYS FIRST, and encompasses ED that has become life threatening. It does not only refer to "has a plan" but includes "behaviors that can kill you that you keep doing even without a plan/intention". ED behaviors are also NECESSARILY "Therapy Interfering Behaviors"! Food is medicine, and if you're not eating / purging / binging, that means that your therapy is being severely interfered with.

So you see, in either case, under the DBT model, ED behaviors merit full treatment attention and highest priority. The only exception being, as in Foodsupport's situation, when even MORE threatening behaviors are in play, THOSE get priority. Anxiety (as a common for instance) is typically more like a #3. If your ED is fairly well in the recovery process, and anxiety spikes up, and starts interfering with eating (I bet a lot of us know this cycle) ... well, then the anxiety becomes #2, and you target therapy at it, to keep the progress you've made on the other more serious stuff.

The unifying theme here, is keeping your focus on the worst mole or two, so you don't wind up with SWAMS and moles running everywhere. That is just exhausting and counter-productive. Being Alive is #1, engaging in and complying with treatment is #2. Keeping #2 going is how you keep #1 happening, and how you eventually get to address everything ELSE. If you need to manage your 1b mole This Way to keep your 1a mole from popping up Over There, well, that is your situation, and that's what you need to do.