195. Do I really want to hear the truth?

 Before anyone panics, I don’t mean about cancer recurring!

Thursday, I had my telephone consultation with Oncology. Much to my pleasure, it was Dr U, the young (well, relatively) Irish consultant who had dragged me through my chemotherapy so he was familiar with my history and I felt able to speak in free-flow. Poor man. I’d already talked with a Macmillan nurse and been slightly alarmed but I asked the same question and at last got an answer. There is no such thing as cancer aftercare specialists for adults. They exist for young people but not us. It falls to oncologists to follow things up and to GPs (not encouraging when you have a GP like mine who admitted she had no experience of cancer treatment side effects. Why didn’t I scream that it is her job; if she hasn’t the experience, then get it!). Dr U said there should be such a service - St James’s is the regional centre of excellence after all - but there isn’t :( 

So we were off to a bad start. Remember I was nurturing my UTI at the time and waiting for antibiotic magic to work so I was perhaps vulnerable. However, Dr U took me seriously and asked me to list my symptoms in order of severity. That was a long tale of woe and I confess I omitted to mention a few things like still being wide awake at 2am but I offloaded a lot and he is the first person apart from my therapist who has listened to the whole picture. Then he drew up an action plan with me and made sure I was returned to his list so we’d get continuity. Brilliant. Dr E has been very nice but I don’t know her from Adam. Dr D, with whom I completed my treatment and all the follow-ups is way too focused on results to bother with a holistic picture.

So where am I? 1. My MRI showed nothing problematic, nothing that would cause my lack of balance, misjudgments, muscle weakness etc. 2. Peripheral Neuropathy (which I may have permanently, it was always a risk but it’s still early days) DOES cause neuropathic pain (contradicting Dr E) so my weird pains have a possible cause. Example: I stood barefooted on the carpet and lifted my foot to dry it because I was sure I was standing in cold water spilt on the carpet. It didn’t matter that I knew the carpet was dry!! Confused messages to the brain. 3. Neurology may not be the best team to look at my balance etc as they tend to focus on specific disorders and take a long time to arrive at a different conclusion like chemotherapy after-effects. So here comes the humiliation 4. He wants to discuss my case with the Frailty Team. My mum went to that clinic when she kept having her falls!!! He did say they might not see me as I am far too young for their service but the insult had registered. Insult? To be honest, I guess I am a bit frail and I really would like to regain some of my upright stability. 

I now have to wait 4 weeks till he rings me again with a proposal or even a sorry, nothing doing. Meantime, I have registered with MySarah and I’m doing my hand exercises daily. I hope to return to the leg exercise tomorrow, now my bladder feels more secure, and go for a swim next Tuesday and just pray my GP was right last week when she said it was bad luck and not swimming that caused my UTI.

Fingers crossed that there is something out there to get me back on track. I feel something of an invalid right now. But I treated myself to a lovely bouquet to cheer myself up (and supported our local businesses): 

And I got invited by the Breast Cancer Now site to join their Community Champions as it’s been noted that the replies I write for others are “consistently kind and thoughtful.” What a lovely compliment. Sadly, I’ve had to say no for now as I think I need to get myself sorted out but maybe anther time.

193. Testing, testing...not testing

Completed 3rd September. I’ve not been my usual (?) chipper self:  I’ve dutifully been making my contribution to Covid-19 research since its introduction in March. It’s run by King’s College, London and I sent the link to all my contacts so if you aren’t doing it, it’s not my omission. It has contributed immensely to understanding of the coronavirus, including providing the data so loss of smell/taste were added to the official list of core symptoms, so it feels worthwhile. It’s simple enough: 2 questions daily. Unless something is amiss - and that’s when I question my civic duty in the face of such confusion. 

Instead of clicking ‘I feel the same as normal,’ I clicked the alternative because my IBS had sneaked back. In fact, I had a tummy upset following my first foray to the pool at Cookridge Hall (I have this plan that swimming will help build up some of that missing muscle mass I apparently have and also build up my stamina. If you’d seen how little I managed first time, you’d question if it was worth it). The questions that followed in the survey were simple yes/no responses. Yes, I had an upset stomach and yes, my appetite was poor, unsurprisingly. The next thing I knew, I had an email saying my responses indicated that I had (or didn’t have) some of the symptoms of coronavirus so would I be willing to take a test? They were asking people with and without symptoms. So I agreed.

Meantime I was faced with ethical decisions. I knew I didn’t have coronavirus but I didn't have the proof. I had to tell my potential visitors even though they would be sitting outside. End of visits. So then I thought what if they are right and I’m wrong? I’d have to do the test. The test arrived very quickly but not quickly enough - a home test has to be done within 4 days of onset. I didn't even understand the posting directions - within not more than one hour before the time stated for collection. Eh? Did that mean I had to post it in the last hour or before that last hour. It was Saturday anyway so it was academic. No test!

You’d think that would be it but no. My tummy settled and back on track for swimming, did I have the moral duty to stay away just in case some algorithm was right? If it was right, I’d be putting others at risk and risking people’s jobs. So I decided I’d better not go till 14 days since the tummy upset had passed.

Then it was back in my cossie, manage to swim further and do more leg exercises like water-walking (bloody difficult when you’ve not much strength) and then a UTI, from which I have yet to recover. Sadly, no swim this weekend, although my GP did say both the tummy upset and the UTI are just bad luck, not the pool. My oncologist says the reverse. Why does no one deal in facts any more?

194. This is getting ridiculous

 Sorry folks. Almost everything has been so unrelentingly miserable that I chose not to write my blog. I have entry 193 started and unfinished - started on 9 August. Also, they’ve changed the format of Blogger and I struggle with it. My apologies but maybe this is telling us something...

Anyway, to make you smile, I’ll reflect on our 49th wedding anniversary. I’ve learnt to have no expectations so a “Happy Anniversary“ delivered along with my morning cuppa was pretty much going to be my lot. I got Dennis a book he was keen to read and I sent him a bouquet of flowers. I chose a white concoction with an unusual green flower because it included three very large white chrysanthemums. Very early in our marriage, Dennis had gone to Leeds market to buy his new wife a bouquet to celebrate two weeks in our new house. Yes, he could make wonderful little gestures. When I opened the door, he stood with this huge bouquet of TWELVE giant white chrysanthemums. He’d carried them home on the bus. I’m afraid I just burst out laughing because it looked like he was holding a wreath and, yes, I have not had flowers bought for me since. As they say, my bad.

I included what I thought was an amusing and loving reminder of the legendary white chrysanths but it was wasted. I left him to arrange his own flowers and noticed them in the hearth. I found it hard to believe my eyes. I decided to say nothing and see what happened. This picture is Day 8.

Eventually I had to ask him what kind of flowers he’d got. He had no idea (so much for my loving message meaning anything). I then gently slid off the green plastic protection M&S had put on their blooms to reveal their real glory. The rest were dead of course. That was 14 August and two of them are still going strong so maybe they enjoyed hibernation. Not bad value, M&S! And the cat adores fighting with the mass of falling petals.

I’m killing time before I am able to take my new medication - a  single dose of a strong antibiotic since the last batch didn’t get rid of my excruciating UTI. It’s been a real farce trying to find something that I could swallow (another long story I’ll spare you) but I am allowed to take it at 11pm, having taken all my night meds early. No food 3 hours either side and no peeing. THAT is a tough order but I’m hoping it will work quickly and I’ll sleep through the night. How does such a tiny part of the body create such appalling pain??

Tomorrow I have a telephone consultation with an oncologist. I don’t know about you, but I kind of expected things to be back to normal by now so I had a long chat with someone at Macmillan who advised me to go on the offensive now because things have been dragging on way too long. Indeed they have. Here is a peep inside my bottom drawer with all my meds organised by importance, spare boxes stored at the back:

It’s ridiculous isn’t it! But if it’s necessary, then I’ll take them as directed (apart from the diazepam, a luxury I don’t often use). But are they doing any good? I don’t feel any better and in fact I feel markedly worse. Hence going on the offensive tomorrow with the poor oncologist, who probably won’t know me from Adam. I can’t go on being permanently ill - but that’s how it feels right now. That’s why I haven’t been writing my blog.

192. The New Normal

This is going to be a waffle. Be warned, avoid if necessary:

I don’t remember when I first heard someone use the term 'the new normal.’ In fact, I probably read it rather than heard it, but it was after I’d scared myself witless by consulting the evil oracle called Google in order to understand my NPI score and discovered my prognosis was less than great. At the time, it took an intelligent and soothingly logical email from C, my breast care nurse, to help me regain some perspective and, apart from momentary surges of horror that last mere seconds, I have it sorted. Maybe it was C who used it?

Maybe it doesn't matter. What did matter was that everything clicked into place for me. I understood that I needed to find a place in my mind to store additional unpleasant things, this time more tangible thing like memories of the experiences I’ve had, my reactions to my diagnoses, the treatments - and that fact that, confident though I am that I am cancer-free, it may not remain like that for ever. Echoing someone’s wise words, once you’ve heard a cancer diagnosis, it cannot be unheard. Nor can all its implications.

I derived great comfort from this concept of a new normal. Everyone who has had cancer has to work towards it and most succeed in accepting that things can never go back to exactly how they were, no matter how much you may wish it so. Personally, I had no problem. Cancer has its place in my life and I'm pretty confident that, freed from maybe half of these bloody side effects, I'd now be as happy a bunny as I was before - happy but wiser. Life is a precious thing and not to be wasted on regrets and what ifs and if onlys. Just get on with life. Que sera sera.

And I will, as soon as my body allows it.

Why am I waffling? I believed this term was specific to Cancer World. It felt a very special revelation to me so it was a huge blow to hear the Prime Minister urging us all to follow his very precise guidance and accept a new normal. Then Matt used it (I have now accepted that he wishes to be on first name terms and not be known by his formal tile of Secretary of State or whatever). Then suddenly every other person in the newspapers and on the TV was bandying the term about. We mustn’t be complacent and assume everything will return to how it was before Covid-19. We must accept the new normal.

It’s only words but I can’t convey my indignation at having one simple term stolen from me. I feel like a child who doesn’t want to share her toys (in my case, her sweets) in a way. On a more serious note, I feel that something very meaningful which provided me with much solace has been stolen from me. I must share it with all those lucky buggers out there who haven’t had the horrors of living with cancer, have merely had the inconvenience of having to home school their kids, forego a couple of holidays in the sun and wonder how on earth they are ever going to eat all that rice and pasta, let alone use all that toilet paper they’ve stockpiled.

I know it sounds petulant. I’m happy to share it with all those who’ve been unlucky enough to be directly touched in any way by this dreadful virus (with the one exception, of course) but I really don’t want MY reassuring concept to be filched by people in general. Life will be a bit different for most - that‘s not comparable to a diagnosis of cancer, let alone surgical brutality, poisoning and radiation burning. I don’t call having to walk in swerves and wear a sweaty mask anything like comparable to the hovering knowledge that the next hospital visit may be the one that brings bad news and all that awfulness has to start again. There’s no comparison.

So there. I am a petulant, selfish pedant - it’s only a couple of words for god’s sake. But I’m serious when I say I feel something precious has been stolen from me. Let’s face it, I have resisted almost all the clichés of Cancer World. I’ve not talked about journeys and battles. I find the concepts abhorrent. But I did love my little ‘new normal.’   

On a more positive note, I have BEEN SWIMMING. After agonising over a new swimsuit (I settled for buying both a size 14 and a size 12 in the hope I shall burn off some of this ludicrously out of character weight), I went to Cookridge Hall with Joyce and Maureen for a swim. I was reluctant to go on my own as I had serious doubts about getting out of the pool without some assistance so I was delighted when they offered. We had the pool to ourselves so I could swim half a length here, a very slow length there - and I managed to haul myself out without too many problems. The only problem came when I foolishly tried the children’s pool which was too shallow to be useful for leg exercising - till I tried to get out. Not easy. A little embarrassing had I had an audience.  I’m hoping to go twice a week at least and, if it works smoothly, I might try the gym in a month or so. I have to get these leg and arm muscles working better. Dennis asked me today if I would always be walking “like that.” Say no more. Mr Tactful dug his grave by adding he only married me for my walk - and hastily added “and brain.”

192. Freedom beckons?

Today is a landmark. August 1 2020. Remember that. It’s the day the government’s shielding strategy is “paused” and we Shielded Ones are granted the same freedoms as everyone else. Actually, looking at ‘everyone else,’ I can’t say there’s been that much freedom enjoyed but, of course, stranded at the top of a cul-de-sac on the edge of the village (for now), there may be all sorts of Bacchanalia going on that I know nothing of. It might explain the cheery smiles I’ve encountered.

Just love that gentle prod!

Actually, I confess I pre-empted this by popping to the hairdresser’s on Monday but I was more than satisfied (in fact a bit irritated) by the level of precaution being taken. It was difficult however to rave about a new haircut when I was wearing a mask that prevented me from having much idea of what I looked like till I got home. More than happy once I got a proper look in the mirror.

Back to today. I planned to celebrate by exposing myself to a normal but ever-so-slightly risky foray into the real world. I would collect my own prescriptions. I went online at 1am Wednesday morning to order repeat prescriptions to tie in with the one the pharmacist would receive in the post Wednesday. Thwarted. First the pharmacist personally delivered an embarrassingly large bag on Thursday but the ones I needed urgently (the postal ones) were not there. When I rang, the First Class delivery had taken 4 days to get from one part of Leeds to another. Why am I surprised? But at least it got there. So I said to the pharmacist not to deliver - I’d pick it up on Saturday to mark my liberation. She explained the system and that was sorted. Only Big Dave, who owns the pharmacy, delivered it himself yesterday, depriving me of somewhere to go. That sounds completely ungrateful. I’m not. I’ve either had a volunteer, Sarah (bottle of wine awaiting our next encounter) or the pharmacists deliver all my prescriptions and I am so very grateful because this is something we really struggled with last year, particularly at those scary times for Dennis when he really didn't want to leave me on my own. In fact, I’m proud to say that experience has helped extend the Bramhope Coronavirus Community Support Group (very catchy) so that the list of volunteers will be maintained indefinitely to help members of the community in need.

Back to Freedom. I don’t feel safe enough yet to venture into the supermarket, a garden centre or a pub. The first two would be impossible owing to the mobility problems and what is there in a pub when i) I don’t drink alcohol and ii) we can’t meet up with anyone?  Now... why don’t I feel safe enough? Common sense tells me I will have much-reduced immunity to the usual bugs around - colds and, perish the thought, tummy bugs - so I need to tread carefully, if tread I can. But the main reason is this:

Apologies for deletions but the blog is public access

I may have ranted already that the letter is signed Matt. I know of a Matt who works in Jumbo Records and is like an oracle in this household (Matt says... Matt put it aside for me...Matt didn’t give me my discount!). I think I worked briefly with a Matt who worked for one of the drugs agencies in Leeds. And a Matt did some work for us on the house, maybe the porch, early on. Otherwise I know no Matt. It may show my age but I really object to some jumped-up entitled Tory thinking I will look on his policies (if there are any - read on if you can bear to) more favourably because we’re on first name terms. Sorry Mr Hancock, the greater the distance you are from me, even in Covid-free times, the better. At least Robert Jenrick had the nous to sign his full name. Maybe ‘Matt’ was tired

I digress. The letter tells me that, from today, I may go to work; go outside to buy food, to places of worship and for exercise but I should maintain strict social distancing. I was already able to form a social bubble or meet up to six people outside. Elsewhere, it says I may wish to go to more places and to see more people. I guess there’s nothing contradictory there but it’s getting a bit imprecise. Then he includes the words “ The advice is to stay at home where possible.” Now doesn’t that inspire confidence!

So I’m in a position where, it seems, I can interpret the government’s advice in several ways - but which is the safest? Obviously to stay at home. But after over 4 months practically isolated from the real world, I’m antsy. I can’t walk anywhere and the prospect of driving to sit in some car park isn’t alluring but it would be great if there was something I could do. Dennis of course isn’t bothered. Lifting shielding doesn’t make a jot of difference. He’s got out of the habit of visiting record shops, doesn’t miss it thanks to the internet, and really is quite happy to remain as he is. 

The solution lies with Joyce and Maureen who visited my ‘patio’ on Thursday. Next Saturday we will be going to Cookridge Hall to go swimming (someone to hoist me out of the pool - yay!). The only problem is that things are changing rapidly again as another spike is appearing across West Yorkshire and Lancashire. Leeds is safe, with a low infection rate of 4.6 per 100,000 compared to 13.1 across Yorkshire & Humber, but we are a hair’s breadth (or hare’s breath) away from Bradford which is back in lockdown. Joyce, aren’t you glad you made your escape to the Lakes hours before it was announced! I guess it’s wait and see if the poor little starling flops to the ground or finds its wings and soars.

191. Plus ça change encore une fois

I hope my A level French has survived correctly. Regardless, I’m stuck in a gigantic hamster wheel and peddling as fast as my legs will go and getting precisely nowhere.

1. My joint and bone pain is getting worse. I have to be constantly on the move to ensure something doesn’t seize up. But  catch 22 - I don't have the energy to be constantly on the move. Catch 23 - I don't have the energy because of the muscle pain. Answers please on a postcard.... No, don’t bother. I know the answer.

2. My GP thinks Rheumatology is dealing with it. Oncology thinks either my GP or Rheumatology is dealing with it. Rheumatology thinks either Oncology or my GP is dealing with it. Between them, they have created my hamster wheel.

3. I received a summary from Oncology to my GP. Lovely Dr E wrote: ‘Janet has undergone a rheumatology phone assessment and we are appreciative of this. Janet is now utilising Voltarol for her joint discomfort, this hasn’t immediately provided relief however she wishes to persist with this over the next few weeks.’ (Her punctuation). Wtf. Am I meant to bathe in the stuff? Which joint do I focus on for the prescribed daily use of Voltarol? My fingers get a free dose when I’m massaging my knees but there are a lot of joints left without this ineffective treatment.

She then goes on to say that, if it gets worse, ‘we will discuss further with rheumatology whether a steroid injection would be appropriate.’ Another wtf?? Which joint has the dubious privilege because it can be bloody painful. Maybe I’ll get one in each finger joint. 28 joints plus my wrists. To see in writing that the solution to all this seems to be a tube of Voltarol doesn’t quite capture the severity of the problem and I’m back to thinking maybe I’m being a bit of a wuss. Try telling my swellings that.

4. Meantime I do my exercises. I have even planned on going for a swim and have 4 M&S costumes to choose from. I’d forgotten how badly M&S swimsuits are designed, cut up the thighs to elongate the legs and slip neatly between your buttocks. Ugh. That’s two ruled out immediately. That leaves me with the post-surgery swimsuit that’s actually quite nice and cut respectably across the thighs. Do I go for the size 12 I can just about squeeze into and risk my weight creeping up further so I can’t get it off OR do I buy the size 14 that is marginally easier to get off but is too loose around the boobs (or boob - if I had two, I might manage to anchor it but it’s impossible with only one and an aqua knitted knocker).

I have reservations about swimming as it will be only the second thing I do straight out of shielding. Is it safe? Equally important, how do I get out of the pool after I’ve swum a mighty single length (if I’m lucky)? The steps are vertical and you need to rely on hand and arm strength to haul yourself out.  What if I can’t get out lol??




5. Quite early on I promised myself I wouldn’t slip into pity parties. That did not go down well with my therapist! Anyway, this is my pity party so - sorry but tough! As the late and great Lesley Gore sang: ‘It’s my party; I can cry if I want to...’ Where that came from when I can barely remember the title of the last book I read is a mystery but I think Dennis would approve. It was Murder on the River Usk and it was pretty bad; not recommended.

190. The comfort of chocolate

As the 10 stone mark creeps ever closer, AND I have just ordered a new swimsuit online in size 14 as there is no chance of getting my size 8 cossie over one thigh, I decided to fill my time with investigating suitable exercises that might flatten a tummy. Armed with a Cadbury’s Time Out (I thought the name appropriate) and having been instructed to put aside any ‘sodas’ or ‘fries’ but not chocolate (I like this lady, or am I missing her point?) I watched, slightly appalled at what might be expected of me. The exercises involving pressure on the hands are out. The exercises involving bending the feet are out. Anything lying on a mat is out - I shan’t be able to get up again. She completely lost me when she described pain as “motivating.” To what? Reach for the Voltarol? Anyway, I have concluded there is one twisting exercise I can do standing up. You are meant to keep your feet together but I’d topple so I can stand feet apart and, arms stretched out at shoulder height, twist sideways repeatedly.

It’s a start. The gym opens next week and I don’t want to give up my membership. So long as I can drive and it’s safe to hobble to the pool. Maybe I can go swimming a few times a week. Maybe....

I survived Monday intact. Just a bump on the back of my hand where attempt #1 failed to cannulate me. The hospital wasn’t buzzing but it wasn’t much less busy than pre-pandemic. Everyone was masked though I saw no signs to instruct us, In fact, I did see one young woman sitting maskless but no one was going anywhere near her - maybe that was her purpose. Things were marked out clearly and there were signs not to enter particular spaces and I watched staff in the corridors step aside to allow people to pass without encroaching on these areas (mostly round the reception areas and nurses’ stations).

Emma drove me there, a somewhat circuitous route but she knew what she was doing so I kept quiet. What did I care? I’d taken my lorazepam lol. Only 1 this time. The 30 minute treatment took 70 minutes but that was the nurses faffing around. They are lovely and I would never dream of criticising them but timekeeping isn’t a strength.

The sandwich lady appeared, followed by a tea lady who made my first drinkable St James’s tea. Challenge: how to consume either when masked. I tried lifting my mask above my nose but was blinded by that so I resorted to hooking it under my chin. As a result, much of the interaction with the nurse was with me mask-free But I reckon she was confident I was a safe bet as I’ve been shielding.The other problem was how to reach my ‘lunch’ when it was on my right and I mustn’t move my right hand. Hmm.

And here it is. A little bag of pure acid dripping into my veins. I wonder if it would strip the floor tiles. When it goes in, you can feel it flowing through the lower arm because it’s cold, but not beyond the elbow. Maybe it’s warmed up by then.

Tuesday I felt fine. Wednesday I just wanted to sleep. Thursday I noticed my joints are much worse, especially my hands. I hope it’s not back to square 1. I’ll be cross. However, to compensate, the sun came out so I sat in a windy garden, plugged into my iPod but still plagued by construction noise. It’s hardly surprising when they are this close, maybe 10 metres away on two sides. Big sigh..

Their weeds. Ours aren’t quite so high.

Rapid progress. They seem to be an awful lot closer as they gain a bit of height!

However, with the gym open, and after 1 August, at least I’ll be free to get away from the noise for part of the time. Roll on August. Why August 1? It makes no sense. 6 July for the country. 1 August for the shielded. Are they leaving nearly 4 weeks to make sure all those people flocking out of their homes don’t infect themselves again? I decided I’d break ranks and I’ve booked a hair appointment for the 27th! Oooh, what a rebel.