27. Coming or going?

I’ve arrived at the conclusion that I’ve grown out of multitasking. I know it’s not the great talent I thought it was - nothing gets 100% attention - but it’s how I always worked and I juggled those tasks well enough.

Now I’ve lost the knack. I can barely hold one thought in my head. While I’ve focused on the chemotherapy, I’ve neglected my noob. My muscles have tightened and I’ve lost my flexibility. My scar and surrounding muscle have tightened up again and I’m sore, if not in pain. I need to return to the exercise and massage regime, instead of the cursory rub up the arm when I feel a bit of discomfort. But that takes effort and I’m so tired...

Then I’ve got more medication than I’ve ever had in my life. How do I organise that? I have a checklist, I move them strategically so they should be at the right place for the right time - but some are 4 times a day, some two twice a day, some once, some as required...and if they’re in the bathroom, like the essential mouthwash, they get forgotten.

Oh, and I have to fit in regular fluid intake and regular eating. Some tablets need food, some need fluid, either cold water or a warm drink. How am I meant to remember all this!!

Then I’ve got the ‘schedule’ of chemotherapy side effects. Yesterday the steroid high, today (still on steroids) laid low - till I remembered that a possible side effect of the newly-added zolendronate is flu-like symptoms and I understand why I feel totally shattered.

Add more letters with more appointments (another two on the same day, four hours apart - so helpful) and my mind is totally boggling! Thank god for yesterday. May tomorrow (well, it’s today now - steroids don’t help with sleep) be another yesterday rather than a repeat of today. I still love my new hair!

I have to take my beanie off to all those women who manage to organise their families, carry on working and generally get on with life because they have to. I’m so lucky I’m free to go where the mood takes me. Not so sure how lucky poor Den is though!

26. It had to go...

Today has been a surprise. First, I felt fine (thank you steroids), which shows the power of negative anticipation on me! Then my heart sank. Wouldn’t yours?

So I rang the hairdresser and she came round to do the deed. I’ve known her for decades. What I never considered was that it might be a moving experience for her too. So here’s how it went:

                
                                                           I LOVE IT!

I’m pretty sure I’ll happily go out like that, tho I’ll need a hat for warmth outdoors - this is Yorkshire in January after all! What’s sad is that it won’t last long. Once the pink shiny patches come, I’ll move onto my wig for when I go out and my beanies if it’s cold indoors. I can’t tell it’s a wig to be honest but I’m such a delicate lil flower, doubtless I’ll get itchy rashes.

So, no trauma, a lot of laughs and I’m happy - for now.!

25. Have I made any progress?

Oh I swing from one view to another in the blink of an eye. I’d be great on Question Time - see the positive in everything I frankly am past caring about!

Yesterday I spoke in such positive terms about the cancer experience that I even surprised myself. But come on: if the mammogram isn’t 100% reliable, then the fact that my cancer broke out in my skin (ie. areola) was sheer good luck. I’d be happily living out my days till my next mammogram which would reveal stage 4 cancer, probably affecting multiple parts of the body, judging from the disapproving comments the consultants have made about it. One day I must ask just what was so bad about that third lump that it led to all those tests and this treatment.

Anyway, suffice to say I considered myself lucky. I still do. In 5 days time, it’s a safe bet I’ll have changed that mindset.

Today I had chemo #2. We were ONE MINUTE LATE (I went to the wrong clinic reception) and had to wait almost an hour and a half before being seen, by which time someone else had baggsed the Overflow Room. I kept wondering, what if the effects of the Lorazepam run out?? However, even though I had an additional treatment, it was a lot faster than last time.

Things to note:
1. Don’t bother taking puzzles. You’re right-handed, Jan, and they have that right hand becanula’d and wrapped in a dinky little electric blanket. Basically, talk, sleep, eavesdrop, maybe the kindle.
2. The steroid effect varies. Today it was a sudden prickling in my buttocks, genitals and bladder that lasted about 10 minutes. Disconcerting, especially as the first thought is I must pee...
3. Epirubicin, which I seem to get in vast quantities, turns your pee scarlet. It’s essential to remember this to avoid freaking out when you do eventually get to the loo. It changes to a pathetic pink as time (and urine) passes.
4. I am in awe of the nurses who have strict protocols to follow which seem so time-wasting but are essential. They move from patient to patient, injecting those nasty poisons and distracting us with not inane chatter. Today was the origin of names - we had an Ibbetson and a Hellicar. Hmm, I notice Anne didn’t contribute her surname. Now I wonder why ;)
5. Hospital tea is undrinkable. Maybe someone could do research and see if it might be added to the intravenous drugs, the only way they’ll get it in me. It has to have some purpose and probably could kill off a few recalcitrant cells.
6. Leeds workers must be idle sods (I’m safely retired). The rush hour is well-established by 4.30!! Who’s manning the phones, attending trade union meetings?? Nope, all heading home for Pointless.

I have a mini-pharmacy in a plastic bag.

I need to have a serious look at it but it looks challenging. Hopefully if I get it right, it may obviate some of last time’s ugh-time.

What I must try not to do is anticipate what won’t happen. It didn’t last time. Why would it this time?  Take each day as it comes, not expect good, bad or indifferent.

Maybe I’ll be trying so hard not to focus on the vast quantities of hair coming away at the slightest touch (and sometimes no touch at all). Poor lost little mites. Poor me.

24. What’s happening to me??

I just spent a whole hour browsing through headwear for baldies. Please, anyone who notices, STOP ME from turning into a chemo fashion plate!!!

It seems I am expected to want to wear turbans; things with rosettes attached (they don’t say if you came first or if it’s just for taking part - probably wise); dangly drapy things that look elegant on swan-necked dummies - and bobble hats. Everything accompanied by huge dangly earrings. I like studs. Dangly earrings I want to rip off.

                  

                 

What I have :
Good: a swan neck, oval face
Less good: ageing skin, gravity, bags under my eyes, that bloody spot on my jaw, pale as a bowl of porridge

What I don’t have:
Doe eyes, perfect skin, a permanent smile with glorious teeth to flash
The desire to shout LOOK AT ME.

I am 67 and I have breast cancer. I am undergoing chemotherapy and catching my hair as it slides out by the handful. I am not going to feel any more positive or glamorous by being presented with models glowing with youthful energy, heavy makeup and, beneath that headwear, a full glorious head of hair.

I have to confess I stood in Boots on Thursday next to a woman who looked absolutely stunning: tall, long neck, black scrunched-up headwear and matching black scarf over what was obviously a very very expensive drapy sweater. It’s not a look I could carry off but I take my hat off to her for style! Well, make that ‘my beanie.’

I shall wait till I see something I like and stick with my cashmere beanies for now!

23. Smile for the camera...

Yesterday wasn’t a day too soon. Today my hair is slipping out in strands. There’s hair everywhere. Fortunately, my lashes and brows are safe for now.

So here goes. T, the Macmillan hair loss specialist, had a wide range of wigs and a lot of expertise - but stocks were low. Emma sat and took notes while T and I pulled on the wigs and considered the style, regardless of colour - not an easy task. Hairdressers’ mirrors are never flattering. This one excelled in that department!

1. The Dennis The Menace look (meant to look fluffy like my current style but synthetic hair doesn’t fluff well)

No thank you. Not even in white.

2. Sorely tempted. I did like the high and lowlights, even the asymmetric cut was fine. The downside was it would scream WIG to anyone who knows me (so what?), the bigger downside is that I might like it too much and end up back in my old ways of spending time and money on hair upkeep. Nah. I prefer my simple approach now.

3. Final choice. Perfect colour. Style fine, maybe a bit short over the ears but I can brush it forward over my face, which is how I like it. Most people won’t even notice I’ve moved over to a wig. The big question is will I get used to wearing it or will it be easier just to wear my beanies?

22. A change in direction?

The tide may be changing. Four appointments at St James’s in two days and I came away short on blood but smiling. Good news at last. It makes such a difference.

1. My bone scan results were completely clear. I’d been kidding myself it was to establish a baseline for the new, additional treatment which I have to start Monday. Turned out it was to check no cancer had spread to the bones (apparently a popular destination for rogue breast cancer cells). So I fooled myself but didn’t fool my husband. I still think Denial is better for me though.

2. The concern over the enlarged lymph nodes in my remaining breast muscle was ultra-caution and I have been told I am officially cancer-free. Can’t improve on that. Unfortunately, to ensure I stay that way, I still have to have all the treatments.

3. A comprehensive let’s-prevent-constipation treatment has been added - apparently the culprit is the initial anti-nausea tablet given at the start of each chemotherapy session (and I’m not giving that up!!).

4. Wig shopping is hilarious and appalling at the same time. I looked completely haggard and every bit of 67, whereas till recently I looked younger than my biological age. I’m seriously thin and drawn and actually look like I’m ill, even though right now I don’t feel it.

There wasn’t a great range to choose from and I had to try styles regardless of colour. Fortunately, the second one I tried was ideal though I was sorely tempted by one with highlights and lowlights. What deterred me was the fact that eventually I’d have to go back to white or return to spending a fortune at the hairdresser’s. Emma, my goddaughter, independently chose the same wig so I reckon I chose well. I certainly needed to get the wig today rather than order something as I’m shedding hair like Bonnie, our long-haired white cat (now gone) who would leave a trail wherever she went. Time to change to pale sweaters for a few days!

I’ll work out how to add the photos another day. They are seriously unflattering so I’m in no rush.

21. Little niggles

You may have got the impression that I am prone to thinking the worst, ruminating on the worst possibilities and restricting my life to avoid these where possible. Mainly correct - if it’s associated with any part of my body linked to my digestive system, that’s my life. But it doesn’t seem to work that way at the moment.

I’ve found it odd how successfully I’ve managed to exist in the Land of Denial. After all, there are little (?) things that niggle at the back of my mind. I push them away to be dealt with another time. This is how I am progressing through treatment.

Today, I had two trips to St James’s, with two new routes. Pauline took me at lunchtime to Nuclear Medicine to have my radioactive tracer injected. I was uncharacteristically calm. I could have managed on my own but there was always the possibility I might just panic and need to take a diazepam so I opted to ask someone to take me. Again, I was surprised at how adaptable the staff were. The radiographer T was very reassuring and, when I mentioned I could be claustrophobic, took me to see the equipment and talked me through the process. As he said, there was no point in giving me the injection if I couldn’t face the treatment and he’d discovered for himself only recently what claustrophobia was like.

It’s a strange feeling, knowing you’re toxic for 24 hours!

Marilyn and Clive took me for the scan. It was absolutely fine because T had explained it all to me. He did nothing to exacerbate any anxiety like strapping my arms down (one advantage of being skinny is that I actually fitted the ‘bed’ easily) and even stayed with me when my head was being scanned in case I got anxious. How kind is that! Actually it was a bit frustrating because I was trying to meditate and he kept interrupting. The scan took exactly 18 minutes and I get the results in a week. Once we got home, a lovely period of complete normality with not a single mention of cancer and only the slightest reference to it by accident. Tea and crumpets and a chat :)

Niggle: I have explained the need for a bone scan as providing a baseline to determine what dosage of zolendronate I shall need. But that’s my assumption. What if the bone scan picks up some cancer cells in my bones already? See? The seeds of a huge source of anxiety and worry are there. I’m just not giving them what they need to grow. So do I want the results? Do I ask for them or wait for them to mention them at the next clinic 3 weeks away?

Niggle: I can’t think of much that could make compelling reading about constipation. Suffice to say, the problem resolved itself painfully and now I have the reverse problem. The problem for me is whether I should use my usual IBS medications. Which is better for my body: no movement or too much? Normal people would just get on with a healthy diet, high in fibre. Me, I’m struggling to get the calories on pap, which is about all I can tolerate at the moment.

Niggle: the booklets say mouth soreness will improve when treatment stops. I know EC interferes with the immune system and healing is slower. Am I condemned to months of ulcers, sore palate, raw gums (I bought the dinkiest baby’s toothbrush today) and so much pain I can only comfortably eat stuff like porridge, chicken soup, dunked Rich Tea biscuits and tasteless banana? AND my miracle toothpaste contains methylparabens. I know parabens are banished as they replicate oestrogen or something like that. Dammit!!!

Niggle: I forgot the advice to buy a hair net. I’m shedding white hair everywhere now. BC baldness approaches...fast.