112. The ‘end’ in sight

In answer to my previous question, apparently yes. I got a call yesterday asking if I wanted a place on the Moving Forward course they run. It’s this Friday and another ‘early’ start - plus I have to take my own lunch. I’d rather pay a small fee and get a buffet thrown in. I’ve asked on the Mid Yorkshire BC support group Facebook page and people say it’s very helpful.

I have to confess that I feel in a kind of limbo. I’ve noticed I’m lapsing into my old ways, wanting to skip breakfast (or leaving it till almost noon!) and we’re only talking cereal with a few blueberries! My appetite is declining too and I’ve skipped a few meals. Maybe it’s because I don’t have anyone medical watching over me, just well-meaning friends and Dennis. It’s too easy to slip back into the old lazy routine.

However, how can be feel positive when faced with this:

That’s the view over my fence (taken at random as my phone and the sun are incompatible - I couldn't see a thing on the screen).  This is within 30 metres I calculate.  We’ve had a letter from Miller Homes saying wrk will commence on Springwood (as they are calling it) in early August, from 7.30 to 6 daily. I don’t know what they think has been going on for the past few weeks because it’s still only July. Of course, phase 1 is right next to and around us, and they have amended the plans. Lisa next door seems most badly affected with a terrace of three side on to her back garden, 16 metres indicated between her house and the end wall - her future view!  I haven’t the heart to investigate the changes affecting us, though some properties seem to have been moved a bit further off.

The noise is relentless and some of it doesn’t fade into white noise unfortunately. There’s a new machine that has a very deep and penetrating thud to it, not the usual sound to unsettle me, particularly after decades of Dennis turning up the bass. But it seems to come from under the ground as much as from the machine and makes me feel quite uncomfortable. Fortunately, from that point of view, we haven’t had much ‘sitting out’ weather. Having got drenched taking the gazebo down in the pouring rain on Saturday, back up it went yesterday and very grateful I was too. The sun, when it’s out, is far too hot for my legs and that’s the only part of me I can sunbathe, unless I tie myself up in impossible contortions, with this bit covered and this bit not. It’s not worth it.

So it’s a ‘busy’ week this week. Maureen picked me up so I could join the post-tai chi group for a chat. Today some friends are coming this afternoon - we haven’t seen them for at least 18 months and I had to put them off once chemo started. Wednesday is therapy day, Thursday was a cuppa with Anne that’s now turning into an ex-Parklands lunch and Friday is my course.

111. This is endless

I came home today to two letters, The first was an appointment on the 23rd, presumably to discuss the MRI results (what’s to discuss?) and then lengthen the leash a bit. The other was an appointment for 13 January 2020!! I’ve only just recovered from the last zometa infusion (as they so nicely call the nasty zoledronic acid they drip into your veins). It does sound like one of those exotic teas you can only get at the most exclusive health food shops. Zometa infusion...

Physio yesterday was fine, apart from the fact that I don’t do getting up early any better now than when I was working; in fact worse. I felt queasy and really didn’t want to be heading for that blessed hospital yet again. D was pleased with my progress (ie. my ability to stretch my arm in different directions) and sent me away with new exercises to reduce the solid lump in my armpit (a fusion of everything there that has been allowed more movement than it’s used to, thanks to the removal of all the lymph glands). I spent the day doing the exercises every hour as instructed and suffering severe pain as a result. I am such a wimp.

And I have to go back in September. So that’s 1 x August (plus MRI at the LGI), 1 x September, 1 x November and 2 x January - at least. Plus prosthesis fitting at Wharfedale. Will they ever let me go.....

I’m wig-free at last. My hair may be a little sparse still and rather odd-looking but it’s cool. I’d never really felt the breeze on my head before - hair was always in the way. Men have it lucky. In such a heatwave, there’s no room for vanity. Actually it never was vanity, it was more pragmatism - to avoid those uncomfortable or pitying stares that annoyed me. Now, with my lovely soft fuzz (I can sit and stroke it endlessly!) people can stare as much as they like. But no one has, or if they have I haven’t noticed. Bye bye wig. Our relationship was brief and I treated you badly, slinging you on the dressing table, shoving you in my handbag, tucking you in a shoe...but you were a particularly good wig and earned a lot of admiration. Maybe I’ll keep you for days when my hair needs a good wash!

110. Fatigue

I remember when I first encountered the word ‘fatigue.’ Yes of course I read it as fattyguoo. I knew it meant tired, more than tired but not totally knackered (actually I didn’t come across ‘knackered’ until long after, which was probably a good thing - I’m still not sure if it qualifies as a ‘rude word’). What I never understood till now is that there is a distinct quality to fatigue that, for me at least, defies definition.

I was bright and chirpy Tuesday after the ‘chemo.’ I did keep dropping off, my eyes and mind feeling weary but not tired as I understand it. Wednesday I indulged myself with a pyjama day. I didn’t feel unwell, just not quite right. Thursday and today, I’ve had no choice: still pjs, still in bed most of the day, and lacking the energy to read, knit, even watch tv. Even the puzzles in the paper remain untouched. I don’t feel ill. I’m not tired. I don’t have flu-like symptoms which are a common side effect of the treatment. What I feel is utter fatigue.

This kind of sums me up, though I’m more upright. What I wouldn’t give to curl up like the good old days. Unfortunately, even a few minutes in this posture means rather a lot of pain. 

Speaking of pain, I guess I spoke too soon when I said radiotherapy was a doddle. It’s working its nasty work under the skin and my breast muscle hurts like hell to touch. To make things worse, it itches, but nothing so simple as an itch I can scratch. It’s that deep down, unreachable itch that makes me feel slightly queasy. Of course it triggers my numb arm so I’m dealing with weird itches down an arm I can’t massage, only rub upwards and into some mysterious lymphatic route with luck. 

OK, enough moaning.

I got my appointment for my MRI today: another 4 bloody weeks. It’s a good job I’m not really truly worried about the what ifs.  I’d do it privately if I were. It’s at the LGI Clarendon Wing at 8.50 on a Sunday morning. It’s stated very clearly so it’s not a mistake. Maybe they are trying to catch up with heavy demand?  Meantime, no driving. Really? I think I’m going to book a session with an instructor since I’ve not driven now for over three months. The question is, do I gamble or play safe and continue to spend a fortune on taxis (buses just don’t go where I want to go) and rely on friends?

Lisa’s off on holiday tomorrow so it’ll be a taxi to see the physio on Tuesday. I think she may be disappointed with my progress. I always seem to have a reason...  shirker!!

109. The wind in my hair

Ok, there’s not much of it (my hair - see below) but it was lovely to go for a walk today, just up to the local cafe with Dennis, in the sunshine and breeze - and wig-free. I felt so normal and so much myself for once. Ironically, I chose to go for a walk because I was feeling distinctly strange but, in moments, I’d walked it off.

See my number 2 buzzcut?

Last night, about 3.30am, I woke to find the cat staring at me silently. I was sitting upright on the bed, fully clothed and slippered, glasses on, knitting beside me and main light AND bedside lamp on. I remembered switching off the tv at midnight and turning on the bedside lamp. Then I must have fallen asleep where I was! I wonder if I knitted in my sleep?? So, at 3.30, while Dennis let the cat out to go massacre the local rodents, I cleaned my teeth, put my pjs on and got into bed. I slept till about 6.45, when I was wide awake. That is freaky for me. I’d had breakfast by 9! I felt fine and, best of all, I felt barely any tingling in my fingers and toes and my mouth has been fine all day, though food is still sticking in my throat, which is very annoying. I have tended to drop off at the slightest opportunity. The worst effect seems to be a heaviness in my hands and feet, like they’ve been weighted. As I said, I walked that off and wasn’t even hampered by the wobbliness or the numbness in my feet. Good all round, it seems. No flu-like symptoms so far. Fingers crossed.

No date for the MRI yet. I’m confident I’ve understood my body right but... well, Dr D is a specialist. I just want it over and done with, know the results and then I’ll be free to start moving on. Right now, I have one foot over the boundary but the rest of me is held back in Cancer Land.

108. Still in one piece

Appointment 1.30
Location: usual oncology treatment suite.
Treatment length, including flushing: 30 mins.

Great. We’ll be home by half-2 and I can let my legs and feet bask in the sun and read my Kate Atkinson.

Reality:
Arrive 1.10. Trail around ground floor admiring some artwork and the pianist who was in fine form with something classical today (So he CAN play more than WWII songs after all).
Register with desk at 1.25.
Check I AM on list as Dr D had questioned that.
Trip to the loo.
Sat and waited. Rustling and discomfort by 2pm. “Excuse me, what time was your appointment?” The answers from both were 1pm. Oh dear.
Trip to the loo.
Eventually each went, as did many others, and we still sat there.
Trip to the loo.
The nurse came at just before 3 to fetch me, ever apologetic and asking about my last blood test (when I had my last chemo).
“We’ll need to test your bloods.” My heart sank - I’d warned D of the possibility. How long would it take? “An hour or so. Make it an extra half hour.”
Another trip to the loo then down to Costa. We actually drank tea/coffee OUTSIDE (but under vast canopies so there was less for D to object to. He was happy because his favourite support staff was on duty and brought him cheese and pickle sandwiches on the ward!

This is the closest most of you will get to seeing the mysterious Dennis!

Back at 4.15, no results. Talked to neighbour - he’d set off at 12.30, it was now close to 4.30 and all he needed was an injection! (Myeloma?). The other neighbour had started chemo at 9.15 and was due to finish in another 80 minutes! One chemo takes 4 hours and one takes almost 5!!
Chemo started after 5, a short flush, then the zolendronic acid, then a 10 minute flush she cut short. No untoward effects then and none so far but fluey feelings are likely, I’m warned. The nurse was having a dicky fit because the pharmacy had forgotten my prescription for calcium tablets, which I’ve not been great at taking. I explained that my GP now prescribed them and I had ample, thus making her day. She explained why they are so important with this treatment so... I had today’s now. Tutti Frutti flavour ie. slightly sweet chalk. This is part of my prescription drawer:

Under the surface are duplicates and stuff I hope never to take again!

OK, lets hope things go well tomorrow...

107. Rules are rules

I set myself some rules to get me through all this rubbish and they worked. They weren’t conscious. I didn’t sit down and write a list - they just came instinctively.

So here I am, close to the freedom of an NED future, confident that I know what’s what and my oncologist doesn’t.

Rule 1: don’t ask questions you don’t need to ask - ignorance in this case will not be bliss but will be helpful. The less I knew, the less I had to worry about, the less I had to be fearful about.

Rule 2: when the consultant copies you into a letter to the GP, just skim it for the subject, don’t read it in detail.

Rule 3: don’t use Google.

You may deduce from my selected clip-art that today I broke the rules. I not only read both letters from Dr D in detail, surprised that, although she got some of my descriptions of symptoms slightly wrong, mostly she was on the ball. Then I googled the two conditions she mentioned, one to rule out, the other as a possible explanation for what I’m experiencing. All I can say is bring on the MRI asap. I need reassurance now and, if I’m really honest, confident though I am that my symptoms are chemo-related, there’s a sneaky element of fear, of ‘what if she’s right?’  Aaaarggh!

On the bright side, we have a new addition to our Wood View:

             

Wood Loo?                                                                              Just to compensate.        

106. Hi there

Just touching base. Nothing to report beyond the usual catastrophising about next Monday's treatment and waiting impatiently for the MRI appointment. No point catastrophising about that till I know when it is. At least I can be sure it won’t clash with chemo, something St James’s has no qualms about. Maureen got three bc-related appointments all on the same day, all from different branches of treatment and all clashing. You’d think a simple algorithm would flag up appointment clashes before they’re sent out but nothing so obvious: each department does its own thing, then the patient has to sort out the nonsense.

It’s a strange feeling being in this position. Officially I’m NED (no evidence of disease) and considered cancer-free. I’ve completed the three treatments (surgery, chemotherapy and radiotherapy) and embarked on the preventative hormone therapy. Yet I’m not free of the hospital. It doesn’t dictate my daily routine any longer and there’s a kind of uncertainty: is it over or not? It seems I’m required to go back to clinic every three months initially (for what? To ask if I’m ok, I guess), then every 6 months, plus of course the four more zolendrate treatments which take me almost up to 2022. I couldn’t have even imagined life in 2022 when I was at school. I couldn’t have seen myself at 68 shaking off the ravages of bc treatment. Yet here I am... Meantime, I really must restart my regular exercise. My axilla and the area down my left side are very sore at times, particularly if I’ve worn a proper bra for a short while, and I have to ward off the cording, let alone the risk of lymphodoema which apparently can strike at any time. Feels like I’ve got a life sentence now...

I can’t even re-establish my routines without the freedom my car provides me. Yesterday it cost me £22 just to keep an appointment in Horsforth. It might be close by and have our nearest railway station but is there a regular bus service? Of course not. The weather is crap so I can’t even sit outside and, when I last did, I eventually got driven indoors by the high-pitched squeal of the builders’ giant caterpillar that kept crossing the field.

Since hopefully we’re not staying in this house now, I decided against something permanent like a wooden shed/gazebo and bought a canvas one that we put up on Monday. It’s been cloudy and windy and drizzly ever since! However, for a brief time, I was snug and private and sheltered from the wind and any harmful sun rays (I should be so lucky).

Please ignore the weeds, the state of the lawn and wild hedge, let alone the neglected wooden seat. We’ve had a lot on our plate these last ten months! I’m not sure if the ‘gazebo’ is resting on a slope or if it’s standing a bit lopsided. Probably the latter! Anyway, it’s been moved out of sight till I can relax in the sun (which seems to get worn out before it reaches the North). Not that I could see anyone bothering to take it apart in order to steal it! Well, there you go: I complain about the absence of sun and here it is (briefly and not worth gazebo-shifting, guaranteed). But there’s a patch of blue sky so maybe I’m wrong. Fingers crossed.

105. Spirit-sinking time

Woke to a cloudy day and some strange sounds outside. The hay mower and baler have been out this week so I thought no more of it till Den informed me they were removing the trees that separate the two fields, part of our wood view. For those who don’t know me, our house is called Woodview - for now. In fact, considering the wood in question is Spring Wood, we now have an even better view of it. Unfortunately that won’t be for long.

I could have wept:
Going   Going   Gone 

The new view:

Just a row of hawthorn stumps left now. Even the bales have been removed. There are some very confused animals. One grouse paraded up and down, looking for his favourite perch and (almost) shaking his head in disbelief. 

So this is the end of this rural side of the village and the beginning of eight years of constant noise and disruption, with a lot of sulking on my part - until we find somewhere else to live and I’m just not up to considering moving for now.

On the bright side, I rang St James’s switchboard and asked for the Breast Care nurses, left a message for C and she rang me this afternoon. I haven’t seen or spoken to her since December and didn’t even realise she was my bc nurse till Dr D told me during radiotherapy. I’m now reassured about having the zolendrate drip the week after next (hopefully I can still find some friend to drive me as I feel a bit vulnerable for a cab) but I’m pigged off because she confirmed my thoughts about driving: I should wait for the MRI results. However, she did say she’d send an email to see if she could speed up the appointment process as it’s usually about 6 weeks. Add the waiting for results etc and that’s an addition 2-3 months not driving.

Today’s actually been pretty bad in terms of the peripheral neuropathy, with tingling along all fingers and thumbs and along my feet, rather than just the toes. As for my mouth, again it’s someone else’s! Nothing fits. On the positive side, still nothing much in terms of effects of radiotherapy (apart from the assumed obvious - that it’s destroyed any rogue cells that escaped the chemo (as if anything could!).

104. Renewed adolescence

Yesterday I had the thrill of going out with matching boobs - thanks to my knitted knocker and a new bra from Asda, To add to the thrill, mascara! I have more lashes on my lower lids than I ever had (I wonder for how long) and my upper eyelashes are just about long enough to bear a coating without the risk of jabbing myself in the eye with the mascara wand. Now I can start using my lash serum which promises thicker, more lush lashes in 3 months. Let’s face it, it can’t fail on either count, considering what was there - or rather, not there. Having said that, if my eyes can react to Simple, I’ll most likely get a reaction and not be able to use it anyway lol. AND I have eyebrows again, albeit rather stubbly, but definitely in eyebrow shape and with some colour, unlike what’s slowly growing on my head.

It did take me back to the days of agonising in front of the mirror, painstakingly painting individual lashes a la Twiggy. I remember I once tried it with the upper lashes too, not realising that when I blinked, it displayed two arcs of freestanding black blobs. Heigh ho... those were the days. Orange foundation that stopped at the chin, exposing a white neck; lurid blue eyeshadow; spitting in the mascara and stirring up mud with a brush - I quickly learnt the dos and don’ts and passed them on once I started teaching. In came the experimenters for registration, I suppressed my smirk and looked disapprovingly, given the school rule of no make-up, and later I’d take each aside for a gentle suggestion that foundation was there to enhance the skin and should be a close match that could be blended over the chin and into the neck so it was invisible. Hopefully I saved a lot of embarrassment but it was kind of reassuring to know most girls made the same mistakes.

I must learn to be more thoughtful about how I treat things. I have no embarrassment about my wig (still necessary sadly as my hair is a bit patchy) and, after almost giving Dr D heart failure by whipping it off to make her examination of my face and neck easier, you’d think I’d appreciate people can feel shock. Yesterday, it was the knitted knocker. As we sat over lunch and/or coffee at Cookridge Hall, someone expressed curiosity about it so I just whipped it out. I was taken aback by their surprise. I’m not uncomfortable so why should they be. But further thought makes me realise I need to be more considerate - ask before revealing the intimacies of my make-do-and-mend solutions to the ravages of breast cancer.

Speaking of ravages, I’m still waiting to hear back from the nurse at the hospital and trying not to get anxious about the prospect of the zolendrate treatment. I guess I could just plead for some additional preventative stuff on the day if necessary - but it all comes tailor-made from the pharmacy so it would mean very long delays. I haven’t even found someone to take me. I really don’t fancy a cab in case I do feel ill - they were fine for radiotherapy and for chemo once I knew exactly what to expect but this is unknown territory. Unfortunately, everyone I’ve asked is already committed that day. It leaves one person who I promised myself I wouldn’t ask again as she’s done so much already. By the time I do ask, she’ll be booked for something too!

As for the peripheral neuropathy, it continues to strike in unexpected ways (mostly too personal to detail here) and to come and go. Yesterday I could wield a needle and thread - thank god for the needle-threader. I completed the three cardigans and dresses and Anne’s coming on Thursday for a cuppa and will take them off my hands. I suspect Lottie will be too big for her dress and Emmy and Anya too small for theirs, despite trying to keep to the measurements I had. Anya’s looks enormous! Today however, there’s no way I could use a sewing needle as my fingers are far too tingly. My mouth feels enormous and again my swollen top lip is folding under my teeth. It was fine for most of yesterday. I just don’t understand what’s going on - but I don’t like it.

Hold on. This started positively and ends miserably. In the grand scheme of things, I am FINE :)