266. Zippidy Do Da….

Today will mark to beginning of a WHOLE WEEK OFF. I’d have danced if I’d had the energy.

We went for the usual consultation and I asked Dennis to come in with me as he now can hear what’s being said and I wanted him to feel included and informed! I started with a tale of woe as I felt shit, mentioned my cough, then of course started coughing and wheezing. 

So I ended up having a full medical examination. Did I mind taking my top off? No problem and I started to whip jumper and t-shirt off in one quick movement. Dr U quickly turned his back. Did I want a chaperone (eyes averted from my naked top half)? I’m 71 for god’s sake - and my husband is 6 feet away! So I clambered up on the bed (I do nothing elegantly nowadays), flopped back and lay there. Turned out I was lying on the ‘modesty sheet’ he’d set out for me. Lots of wriggling about with zero modesty and then I was ‘decent’, naked top half covered with a square of paper that was immediately removed so he could examine my chest! I’m assuming the paper is his protection from accusations of improper conduct.

I got a full examination, including checking my healthy boob, axillas, mastectomy scar, skin mets etc. I reckon the modesty sheet was only used when he wasn’t looking at me anyway. And what’s to see? A jagged scar across half my chest and round to my shoulder, plus one boob mostly under my arm… you’d have to be pretty unusual to find any of that arousing! Plus I still have a good reflex punch in me so I felt safe.

I do have a few new lumps in my skin but the face met, the one that was cutaneous and therefore did worry me, seems to be healing. (Quick check: no, back to normal - it must have just taken a few days’ rest). Otherwise all felt healthy, including my liver and, most importantly right now, my lungs. I confess the thought that my cough might be a symptom of metastasis to the lungs kept crossing my mind so, unless the CT scan shows otherwise, everything is fine for now.

Dr U first suggested a short course of penicillin for what he suggests is a viral infection. Then Dennis asked about my exhaustion which definitely has been worse this cycle - was it going to improve again? At that, Dr U changed the treatment from antibiotics to a week off chemo so my body can fight the virus. JOY! A week off chemo feels like Christmas has come early, a truly welcomed gift. So, tonight I start my week off. My meds are being delivered this afternoon but they will sit unopened for a whole week.

He then explained what he doesn't understand. He said there are two types of Triple Negative breast cancer, The first is unstoppable and just runs its course. The other is very aggressive but responds to treatment, generally for a few months and then the patient moves on to the next treatment. Then, he said, there’s my cancer. It doesn’t fit any pattern and there is no other case in the whole hospital. No one has come across it before.

He said it’s like my body works with the chemo and holds it back. Then my body gives up for a bit and the cancer begins to spread and then my body picks up again and fights back. So it’s containing the cancer against all the odds and all the scientific data. That’s why I’m monitored so closely and why, when Dr U isn’t available, I’m seen by the top nobs - everyone wants to see me! So I’m renowned, just as my mum was - not for any reason worth celebrating but because we are scientifically intriguing.

Hopefully my cough will improve over the next few days and my energy level improve so I can fit in maybe one trip to the gym, or even a swim. Anything to break the monotony of my ‘routine’ which is based on the principle that I have no routine.

We’d waited 84 minutes to see Dr U, then I had to queue to have my bloods done, so we didn't get home till almost 2pm. I could have gone to support group easily! Lisa was picking me up at 2.20 to go to the LGI for my scan so it was all a bit rushed. And the CT department was heaving!! Usually there are just a couple of others waiting so it’s not long before you get called. Friday was horrible - nowhere to sit and, for the first time, bloody-minded patients refusing to move on (one behoodied and baseball-capped couple did when the receptionist said she was going to ring security). I sat somewhere else once I’d been cannulated so I only heard the second fracas but some women screamed “I’m beginning to get mad now” and she did. The poor receptionist. Security had to remove the woman but receptionists really don’t deserve this. It’s not their fault if a patient arrives 2 hours late for their scan and she has to tell them she can’t fit them in. 

So, I am following doctor’s orders of bed rest (apart from when I spilt a whole mug of tea over the duvet), paracetamol when my temperature rises and, hopefully, no heartburn today. It’s been horrible the last few days and supports my belief that my ‘virus’ is in fact an inflamed oesophagus. But what do I know??

265. Oh what a week!

There’s no getting away from it. Slowly but noticeably, things are beginning to progress. Dennis of course is overreacting - I can’t even cough without getting the third degree (how do I know WHY I’m coughing??). My CT scan is Friday afternoon, a few hours after my usual consultation, so there will be no results for a further 3 weeks - unless it’s bad news and I get The Phone Call. I’ll just have to wait and see. Dennis is already convinced that things have spread but we all know how reliable his judgment on this matter is, bless him.

Meantime, I’m finding myself feeling a bit more vulnerable. I can still push away the intrusive thoughts (never good ones nowadays - where’s that adolescent ability to dream of John Lennon gone??? Now it’s just cancer, cancer and more cancer). I’m worried they are breaching my defences and I’m going to end up side by side with Dennis in the Jeremiah stakes.

So today I’m writing about…. 

The worst things you can say to someone with cancer, especially cancer of the incurable kind:

1. “So and so has the same problems and she….” Hold on. No one has the same problem. Each case is unique in its chemical complexity. Each personality is different. Each body, each temperament - both are unique. Comparing yourself to anyone else is futile and risky. I am ME and I’m doing the best I can.

2. “ Maybe you need to get out and about more….” Yes I know that and I would if I could. But most times I can’t because I suffer from chemo-induced fatigue. You won’t understand what that feels like until, god forbid, you experience cancer and chemo so count your blessing and button it.

3. “Any of us could be run over by a bus tomorrow….” Once I’ve apologised for blacking your eye, I might try to explain that the possibility is very different from the probability. Follow the Green Cross Code, or whatever it’s called now, and your possibility is low. But it’s a bit like I’ve been plonked in the middle of the road. The chances are a lot higher and, if the bus overtakes a bike, the probability becomes certainty. Not knowing what day your bus may come is hard for many. For now, I don’t think bout it.

4. “None of us knows what the future holds….” Absolutely true. But some of us have it in writing that our future is finite. When, of course, we cannot know. It could be the end of this week if neutropoenic sepsis gets hold; it could be some time next year, if the cells are multiplying and on the move; it could be a couple of years if luck and Dr U’s good judgment come into it. Plus of course my cooperation.

5. “My (blank) has the same as you and she’s been fine for (3,5,10…)years….” I’m really pleased to hear good news stories but does she have the same condition as I do? Triple Negative cells are complete and utter bastards, the Usain Bolt of breast cancer - one day they will be beaten but they are quick off the mark, born to move fast and utterly ruthless when competing against chemotherapy and other treatments. They will win at any cost.

6. “You’re looking so well….” Even oncologists say that. What it means is, I’m not bald, I’ve not got huge dark rings under my eye (tho my swollen lid does look a bit piratical), I still smile and convince people that everything is hunky dory. But looking well is rather different from feeling well or being well. I rarely feel well because of the effects on the body of the cancer and the treatment, but that often can be disguised in order to get through something like book group or an appointment. It doesn’t change the fact that I may well feel like shit and telling me I look well makes me feel that maybe things aren’t so bad and I’m being a wuss.

7. “Oh well, you’ve had your good years. It’s not like you’re in your 30s with your life ahead of you…” Yes, someone has actually said that, a member of the support group and therefore someone who herself has Stage 4 breast cancer. She is young and so justifiably angry at all her hopes and dreams being stolen from her by cancer. For that reason, she’s excused. What was that French proverb? “If youth could know and age could do…” I hate what she said but I understand where it’s coming from. To be diagnosed at 28 when you’ve just got married, have your fertility destroyed, then get a Stage 4 diagnosis and be rejected for both adoption and fostering on the basis that she might die at any time must be should destroying and the pain on her face when she blurted it out was heart-breaking. Sweeping judgments are forgiven.

8. “It’s really time to get your affairs in order…” No one has said that to me but others have been told it! At this point, if your oncologist says it, you know you’re in deep shit.

But what you CAN say:

Optometrist: “Your left lens needs laser treatment but I should wait maybe a year.” Either he doesn’t really ‘get’ Stage 4 or he’s an optimist, bless him.

OK, rant over. It’s just that one of those was said to me really recently and it’s been niggling at me ever since! Roll on Friday.