89. ‘A change is gonna come’

I was going to call this ‘Feeling cheated’ but that’s too negative, I confess I’m feeling a bit negative but, like I decided early on, that’s not going to get me through. Well, I’m nearly through so here’s the last verse of one of my favourite Sam Cooke tracks :

There have been times that I thought I couldn't last for long
But now I think I'm able to carry on
It's been a long, a long time coming
But I know a change is gonna come, oh yes it will

I know he was writing about civil rights but it seems appropriate for now. So, rather than whinge about everything that’s wrong with me, here’s a list of changes I’m anticipating, solely in the order they spring to mind:
1. I will get back my own tongue so
2. I will stop lisping and producing vile foamy saliva so I’m reduced to acting like a tobacco chewer (ie spitting a lot).
3. I will be able to taste things rather than going by smell and either saltiness or sugariness. Hopefully I’ll want to eat better, though I think I’ve done a good job in the circumstances - it’s not easy eating when sometimes the food won’t go down because your muscles feel a bit numb. Bacon sandwich and Easter Egg top the list.

4. The numbness will wear off. Right now, it’s getting worse by the day despite not having had Paclitaxel for almost 3 weeks. I’m told it’s peripheral neuropathy (PN) which sounds grand but feels crap.
5. The roof of my mouth and my soft palate will not feel vaguely numb so I won’t have to pretend it’s not happening for fear of having a panic attack.
6. My feet and tips of toes will stop tingling
7. My fingertips will stop feeling numb. I’ll be able to manage buttons, put in my earrings and open things like the top of a water bottle.
8. My skin will not have numb patches. My skin will repair itself and not be so scarily thin and I’ll slather on factor 30 and get my pathetic tan again.
9. My insides won’t feel numb so I won’t have disasters like last Saturday’s spasm and
10. I’ll have more warning when I need to use the loo.
11. My eyelashes will come back. Right now I have three over my left eye and two thin patches over my right, with no lower lashes. Judicious use of eyeshadows, hiding behind glasses, mean I don’t feel as ghastly as I expected.

12. My eyebrows will return; maybe I’ll see a beautician because the spider legs that have resisted all chemo must be like superbugs, resistant to anything. They will need a neat trim at the least. However, I’m not complaining. I have only recently resorted to using eyebrow makeup and, with such wobbly hands and numb fingertips, my efforts are a bit amateurish.
13. Nasal hair will grow, I just pray it’s not in the same way as the hair on my head which, I’m warned may come back thick and curly. Then I will stop sniffing and stop having an almost permanently sore nose.
14. My buzzcut hair is already growing but not thickening, so my hair will regrow to its former silver glory (!).
14b written next day - how could I forget?? The much-despised but underrated pubic hair will regrow. I shall feel like and look a woman again and get no surprises when I have a pee. I didn’t know there were so many wrong directions it could take!
15. I will no longer experience burning pain at the slightest touch (part of the PN, I’m told). I folded the end of a plastic tube of toothpaste and just holding it felt like a knife had sliced my hand.
16. The wobbliness caused by the PN will go. I shan’t walk like a drunk, stumble and I shall be able to do gentle exercise to build up some stamina and some strength.

17. My friends will stop insisting on carrying my bag. Yes it weighs a ton but I feel naked without it.
18. All the soft tissue will repair itself. I won’t get my gums back to their former level but they will fill out and do a better job than right now.

19. My breast muscle will respond to the exercises I’m doing and the searing pain will go away.

20. I’ll get my prosthesis and some pretty bras and be able to wear my former wardrobe because

21. I’ll regain the lost weight, get myself back to a size 10 at least, preferably a 12.

22. I shan’t feel institutionalised, everything dependent on hospital appointments and friends available to offer me transport and their time and support.

23. I shall be able to read the mountain of books I‘ve accumulated and return to writing flash fiction AND I’ll be able to focus well enough to do some more online learning. I had to abandon Forensic Psychology as I just couldn’t concentrate for long.

24. I shall want to celebrate getting through all this crap.

88. Moving on

Today I got my tats. And very disappointing they are. Three tiny dots strategically placed around my noob to guide the radioactive beams precisely. It better be precise - I’ve already been warned of the risks (like the oncologist was talking about items on a menu): Might, actually probably will, hit part of the lung but that’s nothing to worry about (this to a woman bent double coughing) and, if I have a chest X-ray in future, tell them there will be a shadow... Might hit a tiny part of the heart. They use a strong shield but it does still happen and, if it does, it multiplies the risk of angina in older women. OK. Will cause burning, even through to the back, so expect soreness front and back. Otherwise it’s just fatigue. Well, I’ve got that in spades so might not even notice.

The ‘basement’ of the Bexley Wing is rather different from Oncology on Level 1: spacious, light, comfy chairs, chandeliers, quiet gardens outside, calm with little hustle and bustle. Since I have to be there five days a week for three weeks, it could be nice and relaxing - apart from the fact that I am likely to be a zombie. My first appointment is 8am!! The others are 8.45. Rush hour travel grrr.

The CT scan was uncomfortable because I’m so bony (see remarkably pointy elbow below but remember what I’ve been through!) but we managed to get my arm elevated properly and I managed to keep still. There was a little throat clearing but not a coughing fit as I feared so I should be able to manage the short treatments easily. The coughing fit came later, when my voice disappeared too.

Stage 1 home physio....(noisy)

 Stage 2 home physio (blissful)

My ribs are now exceedingly sore. I’m not taking the anti-inflammatories in case they were linked to the spasm on Saturday - certainly the leaflet lists several breathing difficulties as common. Apart from that, my ego hurts. A young woman sat in an easy chair next to us and was chatting. She referred to Kiera as my daughter. Well, the Methley Park nurse referred to Marilyn as my daughter so that’s quite a family I had between the ages of 2 and 6! It’s the white hair. At least, I bloody hope so!! Thursday I have an appointment with the breast/oncology physio to help improve my breast muscle, ready for therapy to begin. I guess it won’t involve frozen peas. I’m predicting it will be pretty painful but it’s essential to stretch all these muscles so I can get through the radiotherapy without anxiety.

So, moving on... I no longer have T as my oncology liaison nurse, though she contacted me Thursday and arranged the physio as well as recommending the DIY in the pictures. Apparently I’m back with C, the Macmillan breast care nurse who showed me round and wooed me to St James’s. At least there’s someone. There is so much that’s not been covered regarding actual breast care and I feel a bit in limbo.

87. A&E #3

Why me? I’m always stressing I don’t want a pity party but I do seem to have the worst luck. Apart from being cancer-free and alive!

I started with a sore throat and a bit of a cold yesterday and hoped it would be like the last - barely more than a 24-hour blip. I did wake at 6, coughing on phlegm, but that was ok, it was a beautiful morning and I was wide awake. My chest didn’t even hurt, for once. I actually thought things were on the up.

After breakfast and my cocktail of pills, I read the paper and suddenly got one of those awful tickles in my throat. When I tried to cough...well, I don’t know what caused it but I literally could not breathe. It wasn’t panic (I know that only too well) and I stayed as calm as I could and managed to stamp my heels on the floor to alert Dennis. He thumped me on the back a few times and then I could just about breathe again. Must have lasted about 2 minutes. I’ve never had asthma but it wasn’t that.

The only contact I had was the oncology bleep holder (it’s weekend) so, once I could breathe enough to be able to speak, I rang. The fact that I had no temperature made the nurse decide this wasn’t for them so she advised me to ring 111, and they might be able to get a doctor to check me over and provide a nebuliser. I got passed from clinician to clinician. The fourth insisted I went to A&E within the hour and, if it happened again on the way, get the taxi to stop and ring 999. So here we were again...

Ok, I will confess that this is the first time I have felt frightened. I’ve rarely had a cough, never had breathing problems and certainly never stopped breathing. Even the time I got a giant vitamin pill stuck in my throat, I was able to communicate with D well enough to get him to do the Heimlich manoeuvre (well, I tried. He kept saying ‘What?’ So I thumped myself in the gut and out came the tablet).

Anyway, this time I was treated as a priority because I am immune-compromised. Wheelchair, straight into a bay to be assessed and then lots of tests.

I was still very breathless but I did say I thought it was stress after the experience. The upshot was:
1. Blood tests good. No neutropoenia. All markers as expected. (My blood is thin however - the poor nurse who cannula’d me and took the samples got rather a lot of blood over her as it shot out and when another nurse removed the cannula, I bled like a pig)
2. Xrays showed my lungs are clear and healthy
3. ECG fine (and lump in hand is not a symptom of thrombosis - too near the surface)
4. My chest is a bit ‘crackly’ but that’s not surprising given the fact that Paclitaxel has caused a lot of phlegm, as well as that horrid numbness, and my chest injury has made it harder to expel it properly
5. I’m likely to have a virus and I must take great care. It’s madness. I asked what great care I should take and she had no suggestions, except to stress the risk of thrombosis and not to ignore anything untoward. How much more untoward is there than not being able to breathe?

In the cab coming home (I was breathing normally by then), the tickle hit again but this time it didn’t catch me unawares and I was able to deal with it without my muscles going into spasm - cos that’s what I think happened. I did wonder if the Naproxen was a factor - it was the only thing different between yesterday and today. The leaflet identified breathing difficulties, asthma etc as possible side effects but I’ve taken it for short periods before so...regardless, I’m not taking it again. I’ll just suffer the rib pain (even worse after today’s experiences).

It’s on and off now. I get an hour or so where I’m relatively relaxed and just cough gently or clear my throat; then, with no warning, I get the tickle and my throat goes into a spasm. I’m managing it by getting up and walking around and making myself breathe into my abdomen. I’ve had lots of warm drinks and soup. But I’m feeling very reluctant to lie down to sleep. I’ll probably sleep propped upright, like after surgery.

So, after all I’ve been through, we’ve found a chink in the armour and, yes, I feel frightened. Not a good day.

86. Even more words...

Tuesday I received an email from Alice Little, who runs Didcot Writers, saying how much she enjoyed my piece for the competition and it was especially poignant knowing it was true or based on truth because it’s a difficult subject. I was really touched. Another ‘stranger’ caring enough to pass on their good wishes. But writing this down now reminds me - why is it a difficult subject???? I can’t quite work it out. There are dozens of conditions and diseases that are fatal, potentially fatal, life-restricting, scary... Why this one? I remember vaguely some comedian who would act out comic scenes (oh lord, I fear it might have been Les Dawson - I have to confess publicly that I watched Les Dawson at some stage on telly. How mortifying!!) as a woman chatting over the fence and he’d drop his voice with the word ‘cancer.’ Yes, it was amusing, taking the piss out of a certain type of person I’m not sure he’d get away with in the 21st century, but it shows little has changed in 40 years. Yet we have far more effective treatments and more extensive research and still we’re scared stiff at the mere word. I still believe it’s only a disease. Maybe it’s the uncertainty around it that makes it so scary?

Yes, it was Les Dawson with Roy Barraclough:

Uncertainty is definitely a feature. Dennis and I were talking about how we’re finding things this week. He obviously (deep down illogically) expected some magic transformation, me bouncing with more energy, horrid symptoms gone. But here I am, same as ever. I had to explain that, while last Tuesday was my final chemo, it was followed by the usual week of my poor battered body having to cope with the vile Paclitaxel and that my actual break to freedom only started two days ago so we can’t expect  much. In fact, it will take months for some effects to begin to go away (and some don’t, I’ve gently been warned). Huh!

Back to words. I got an email of apology from the Practice Manager who’s been on leave, explaining that the failure to contact me after the hospital requested it just before Easter was an oversight by the GP (I won’t name him and shame him) and it could only be attributed to human error, given how busy he was. Human error I accept so I’m satisfied with that - line now drawn under it. Way better than the cold and clinical refusal to acknowledge anything personal by Lloyds Pharmacy. I was a bit pissed off when she added that she noted from my records that I did get my prescription. Yes I did - SIX pretty painful days later!!

I am so close to turning this into the pity-party I promised myself I would avoid so I will close with a positive/negative: I thought I was going to enjoy a short period of freedom from hospital. My liaison nurse, T, has now arranged a physio appointment next Thursday to get my breast muscle into better shape after the accident (which it seems is not mentioned in my medical record!) so I can manage the radiotherapy without exacerbating things further. Two visits on one week :( Imagine what I’ll be like when I have to go every day!! Meantime, it’s frozen peas followed by heat pad and gentle stretching. Great for the muscle but quite how my rib cartilage will like it, I don’t know. Still, an actually-happening physio appointment is like gold in the Bexley Wing.

85. More words....

This really brightened my day:

I haven’t been doing any creative writing, apart from the one photo challenge in December (?) but Didcot Writers’ monthly challenge was All About Me. Irresistible. The brief was to try and convey aspects of your character, hopefully based on fact and reality but with lots of leeway. It was simple: I’d write about what’s going on, what I’ve learnt in the last months...but in 500 words?? I asked myself what was most important to me and whittled it down to the fact that it’s ok to laugh about cancer and chemo (when it’s appropriate, of course) and we shouldn’t be so afraid of the subject because the result is we try to pretend it’s not there. It is - for far too many people and, for some of them, it’s too late. (Yes, I’ve just watched The All New Monty - Who Bares Wins, and yes, I welled up with tears when the twins spoke of their experience).

The stories get posted every few days over the month, probably starting with the bottom one, so it will be a few weeks before it’s ‘published’ online, with the Reader’s reasons for his/her selection. I just hope it doesn’t mention ‘brave’ or ‘courage.’ I wrote it to give a different perspective and to amuse, drawing on bits from my blog. I’ll post the link when it’s online.

Meantime, words with a different impact. I got a reply from Lloyds Pharmacy summarising their investigation into the faulty thermometer. Basically, nothing. After all, no one contacted me for details so how could they investigate? However, the words that really got to me were:

“As a gesture of goodwill for the concern caused please find enclosed a Lloyds Pharmacy gift voucher to the value of £10.” 

I was seething. A gesture of goodwill? When, had I adhered to their thermometer’s readings, I would have been at death’s door? A simple ‘we’re sorry you experienced...’ would have been fine and I made it clear from the start I wanted only a refund plus the P&P. I find the whole thing repugnant but, while part of me wants to write back and say stuff your goodwill, another part thinks just let it go. They can’t apologise because that would suggest culpability and I might sue them. As if...

Fact: the thermometer was faulty, giving readings persistently and consistently around 34-35C. They were 2 degrees lower than reality. In fact, many of the readings could have indicated hypothermia! So when I was holding out at home with a reading of 37C and waiting for it to rise to 38, I already was well above the magic number 38 which means ‘get to hospital within the hour or else.’ No wonder I got ticked off - they thought I’d delayed on purpose and what could have been a simple case of an antibiotic drip and then home ended up as a case of neutropoenic sepsis and 4 days in isolation with a lower than 50% chance of recovery. 

Gesture of goodwill! No thank you.

84. The power of words

Anyone who knows me knows i) if 100 words can be used rather than 10, that’s me.... ii) I love words. I love new words (though I’m finding it harder to remember them, probably because if you don’t use it, you lose it) and etymology iii) I’m often very good at expressing things in words and genuinely mean what they say, yet I find it hard to accept it when nice things are said or written about me and can almost be guaranteed to add a rider in response.

Ok, she’s wittering now... get to the point. The other day, I decided to post openly on Facebook to celebrate the last of my 12 chemotherapy sessions. Let’s face it. Not only has it dominated my every breathing moment since before Christmas Eve, it’s completely stolen my body and completely disrupted our lives. Dennis has turned into virtually a full-time carer (for which he has far greater potential than I) and I doubt he has had many moments not dominated by chemotherapy in some way. There have been positives: I learned not to catastrophise quite so instinctively and learned to trust, not just the oncology team and my friends but also myself. I’ve found a lot to laugh about and a lot to think about. Above all, I’ve learnt acceptance - what else can you do, surrounded by people from their 20s to their 80s all facing the same or similar challenges with such dignity and pragmatism?

Wandered off the point again! So I posted on Facebook, not thinking that very few people actually knew I’d had breast cancer, let alone was going through chemo. The responses I got were heart-warming and truly uplifting and I’ll treasure those comments. Sorry to take up so much space but I want to remember them all:

 

Back to words. Yesterday I received an email from Costa Rica, detailing all the wonders Maureen had witnessed and the incredible views and my heart sank when I saw it was signed by Mum - obviously sent by mistake. But there was an additional note for me saying she thought I might appreciate the distraction from my chemo side effects. I admit I was moved as close to tears as I can get. A few simple words meant such a lot. Thank you.

And I got a text from Trina when I was at a particularly miserable point, having spend all evening spitting into a green mug and feeling generally revolted by what I was experiencing. The insight in what she wrote stunned me. I hadn’t said how I was feeling but she somehow got it spot on: that I’d reached the end of a stage and, no matter how horrid it was, it was what I’ve grown used to and facing new unknowns must be pretty scary. Yes, I think I’ve become a little institutionalised and chemo-bound - let’s face it, it’s been almost 5 months - and radiotherapy comes next, after which..... what?

Anyway, to those of you who’ve left comments and written words of support and encouragement over the months,

83. What a diff’rence a day makes

That tune has been going through my head for hours. Unfortunately I only recall the first line since it must be from the 1950s so Google will have to come to the rescue eventually. Meantime, it just sums up today.

Yesterday, pumped up a bit with steroids, I had a ‘good’ day. Sue picked me up and drove me to book group, where I managed to lisp garrulously about a book I’d only part-read as my contribution to the discussion. It was surprising how much I remembered from the first time I read it and it was hardly a demanding read, being our foray into children’s fiction.

I think all of us read it as it was intended - children’s fiction - without delving into the more esoteric aspects, let alone the controversy over how political and anti-Church it is. Frankly, I’m not up to it! We ended with talk about hospitals, side effects, incontinence (not me) and can-cans. And for once, the cake was absolutely delicious (and I could taste it) so I brought some home for today.

Fortunately I’d decided to stick with my decision to wear my wig from now on. I don’t feel ‘me’ with it on and I don’t care about having so little hair but I really don’t want to be drawing pitying looks as happened last week so it’s the easier option now. I just wish it fit better but, if things keep to schedule, I’ll only need it for maybe 4 weeks and it hardly seems worth the effort of making an appointment and arranging a lift to have it refitted. Back to the ‘fortunately...’ My gym membership revived that day so I was able to swap my Cookridge Hall card for my new Bannatyne’s wristband. I find the idea hilarious - so many of us are in retirement already and we get a trendy black wristband! However, it had to be accompanied by a photograph! FORTUNATELY I had a wig and plenty of makeup on.

I also heard from the car dealer - my car is ready for me. Unfortunately, the insurance hasn’t paid out so I was making call after call, ending with paying the DVLA 25 quid for a copy of the log book to prove my ownership. Ridiculous. But I’m in no hurry - my ribs won’t be fit to drive for a few weeks yet. And I popped round to see how Lisa had got on the other day and must have been there at least 90 minutes.

Almost a normal day though I couldn’t get to sleep and didn’t wake up till 10.30 today. I woke up to a horrible numbness - toes, fingers, face particularly - mini nosebleeding and a sore mouth with a new ulcer on the other side of my tongue now the original has healed. The problem is, when my mouth’s numb, I bite my tongue. Eventually, it turns into an ulcer. So today has been pretty horrid. I’ve managed to do a bit of knitting since I can move my fingers even if I can’t feel them and I’ve been able to type using my fingernails again but generally I’ve felt very sorry for myself and wallowed. Trouble is, tomorrow is scheduled to be worse. Roll on the weekend, then I can look beyond that to fewer and fewer side effects and my body readjusting to pre-chemo behaviour. Top priority right now for me is my mouth - I want my own mouth back, with my own tongue fitting comfortably. I want my tastebuds back to normal and my salivary system to function healthily so I don’t have to rely on my makeshift spittoon!  I want to be able to not feel my soft palate is numb (I just don’t allow my mind to even contemplate that detail) and I want to be able to swallow liquids without the risk of choking. I want my top lip to revert to how it was, with no internal swelling, no curving over my teeth and absolutely no lisp!

That’s not much to ask is it? So that’s why “What a dif’rence a day makes” is going through my mind. Functioning almost normally (but with fatigue) yesterday. Today feeling shit and wondering what fresh awkwardness, discomfort or humiliations tomorrow will bring.

*1959 Dinah Washington - now I have to listen to it to get it out of my head! The nice thing is it’s about rainbows and a happier future. How appropriate :)