Now What?

I've been well enough to restart/continue this blog for at least two months. The last chemo was in November 24, it took me six weeks or so to get over side effects, soreness from operations, and generally picking myself up off the floor. I had the temporary all clear in January 25 and will have the next instalment check up in a week's time. If all is well I will be left in peace for the following six months.

At the moment I am feeling well physically, if it weren't for the dratted leg and missing muscle in my right hip. A crutch will have to be my permanent companion from now on; nothing can be done to reattach the muscle, there is an operation but my consultant surgeon says it has never yet been successful.

As for the minor cancer on the back of my head, well that's of no great importance. Acc. to the dermatologist surgeon the bladder cancer chemo may even have shrunk it; in any case, it is extremely slow-growing and can easily wait to be dealt with until after there is clarity on the more important cancer. In order to avoid long waiting lists for free consultations I have been paying for them but, of course, this being the UK, all further treatments are free on the NHS. If this were the US I'd be bankrupt.

So, that's that.

Now to my blog. I do not fool myself into thinking that my former readers are all waiting breathlessly for me to tap those keys again. A few of you have been kind enough to ask for updates. Thank you. Well, here's the update. 

What is truly bothering me is the state of the world, in particular the dire situation in the US, its effect on geopolitics and the upending of the world order. It looks like democracy is on the retreat. Anger, anxiety and hatred are on the increase; the mildest, most peaceful, calm people openly profess hatred and send useless imaginary death wishes. Attitudes towards war and bloodshed divide nations and people suffer, children are maimed and killed in their hundreds and thousands. It breaks my heart and the heart of every compassionate, thinking person. In fact, on two occasions impotent rage at news reports have sent me into Atrial Fibrillations. Literally a breaking heart.

Is a blog wittering on about mundane daily doings really the answer for me? Even if there is a handful of people who might like to read me - are there still any at all ? - is writing and reading general blogs relevant at this time? Is looking at something like Monty Python's Bright Side of Life the antidote to the general despair?

I mentioned my unhappiness with the state of the world and politics in particular to a Social Prescriber (a whole new type of professional counsellor for practical matters like what to do about mobility, how to access help for all sorts of things ); she thought writing it all out would be beneficial to me as well as recharge my lost creativity. And she also thought that the ME I lost roughly the same time as I had the first diagnosis would stand a better chance of reappearing once I allowed myself to both stand back from and look deeper into my state of mind.

Will blogging help? We'll see.

PS

If nobody reads this it doesn't matter. It took quite some effort to sit down at my computer. As well as courage. I don't want to become a political blog but I also can't stick my head in the sand. I don't mean to give offence but if you feel offended, tough titty.

I was looking at the Formatting pages and how to exclude some readers (mainly very close to home non-followers) but it looks like I'd have to restrict readership completely and go from Public to entirely Private. Any ideas?

Hello darkness my old friend,

 I've mislaid Me, the me with a capital M. The Me that was strong and capable and bloody minded and able to withstand and stare down most things. A counsellor tells me that Me is still here, hidden maybe, or maybe in actual temporary hiding and that the dreadful things that are happening to me are simply too much, that poor old Me is being overwhelmed. The Me that is looking down into what Michael Rosen (an English writer, poet and children's author) calls a Pool of Glum.

To recap:

diagnosis early June, bladder cancer,

cystoscopy, confirmation of diagnosis,

tests and scans and pre op,

operation and biopsy under full anaesthetic,

chemotherapy, one dose,

CT scan with dye,

confusion and head scratching by medical fraternity, (I'll get back to that in a minute),

second cystoscopy

more head scratching,

decision on dates of 6 weeks' chemotherapy settled on, to start last Thursday,

dates of 6 weeks' chemotherapy cancelled.

It's now August.

Second operation and biopsy planned to happen within 4 weeks and the whole bloody rigmarole to start all over again. That is, if I'm lucky and the head scratching leads to a light bulb moment of "aha, so that's what it is". You see it's all the fault of Radiology who should have carried out the CT scan with dye BEFORE the operation, not AFTER. A new operation, more detailed and going deeper, might put an end to the head scratching and clear up the puzzle of what is actually going on.

Luckily, with the exception of a couple of rather offhand and detached Indian nurses, who were more concerned with the procedure they were carrying out than the patient they were treating, everyone is/was very helpful, kind and willing to answer my questions, of which I have many. I may not like the answers but, at least, I am heard. "Yes, not ideal, is it?" said my designated specialist urology nurse. Several times, in one conversation. No, not ideal. 

I would like to get back to blogging, purely as therapy. I've always liked writing. I could, of course, write it as a private diary, not publish here, but most of you have been nice and understanding over the years and there is, after all, no need to comment. There are one or two silly little people locally who might feel obliged to gossip (people who actually know me personally). Okay, feel free to do so, or maybe get a life?

A day later:

I had a letter today with the new dates for pre op and op: the operation is to be on Sept 18th, which is also the day for which I have tickets to travel to the Royal Shakespeare Company theatre in Stratford-upon-Avon for a performance of 'Pericles'. Would you call that 'adding insult to injury'? I would.

More Problems

Sorry folks, things aren't exactly easing. I hate to be writing a never ending tale of woe but I've got to vent somehow. Please, do not feel obliged to read on, and certainly don't feel that you must reply in the comments.

So, here we go. I have the dates for hospital visits, ops and treatments, which is good, provided they are not cancelled. (So far only once. You expect that with the NHS in its current state.) And all within the month as the consultant promised. In a month's time I will be better,  limping along metaphorically speaking, or out of it entirely. One way or another. My son is taking compassionate leave for he first few days afterwards and I have a carer who has promised to take up the slack when he leaves.

So far so good.

Now comes a non medical problem. Last September I changed mobile service provider. Long after my contract with them had ended I changed from Vodafone to my current provider; I was certain  I followed the normal procedure, bar using the PAC code, preferring to take up a new mobile number supplied by the new provider.  Vodafone decided, some time later, that I owed them monthly payments and plucked a figure out of thin air. Less than a month later they had handed my "debt" over to a debt collector. I wrote to Vodafone informing them of the state of affairs and heard nothing. I wrote to the debt collector "Ardent Credit Services", who first increased the amount of debt and then emailed me to say that they were "looking into it". I was then handed over to a second debt collector, they call themselves "The Zinc Group". They now regularly ring my landline with a computerised message inviting me to ring a mobile number. I have so far declined. I googled "The Zinc Group", they exist and are indeed debt collectors with a registered office, but no address. Lots of people have left reviews online on their activities as well as Vodafone's unjust persecutions of customers and non-customers. I tried writing another letter to both, inviting them to explain; still no reply.

A Consumer Champion might help but I simply don't have the energy physically or mentally to enter into a dispute. In the meantime they keep harassing me.

Some time ago I wrote a post here about night terrors.  "Sleep terrors are times of screaming or crying, intense fear and sometimes waving arms and legs when not fully awake."

The terrors seem to have reverted to nightmares, because I actually dream very violent dreams. Earlier this week I woke up, on the floor, screaming, having drawn blood in three places, with deep bruising on the back of my left hand, my upper arm, and my forehead. The knee which was healing nicely is damaged again!

Do not laugh, it really wasn't very funny!

My doctor thinks it is partly to do with the new cancer; I am not so sure about that, I have had serious nightmares for several years and have been violent before. Remember the lamps I have damaged by throwing them across the bedroom floor? What kind of mental health specialist deals with sleep abnormalities? Psychiatrist? Analyst? Counsellor? My doctor thinks there is a need for going deep into my subconscious to dig up the reasons for my disturbed nights. Get this blasted cancer out of the way and I will explore. 

However, please do not use the stock phrase  "And How Did That Make You Feel?" I might actually turn violent while I'm awake.

Shell Shocked

 that's me.

My doctor persuaded me to go see a urologist for a bit of a problem that I'd had for a while; nothing major, I thought. Just a bit of bleeding due to exercise and lugging heavy tubs. In fact, I was utterly convinced that it would be a wasted consultation. After all, I am actually feeling perfectly fine at the moment.

Nothing to do with the reason for my long absence from the blogosphere; I might as well tell you that that was due to me smashing my knee to bits last October, subsequently being unable to bend it and unable to move without great pain. Heavens above, knees are complicated mechanisms! Anyway, the knee is healing nicely and, although I still use a crutch out of doors, I can hobble about again and even sit at my computer for mid-length periods. 

Presenting myself at the hospital on Thursday I was feeling nervous. And scared of the procedure ahead of me. X rays and MRI scan done, I was taken to the examination room for a cystoscopy. The doctor was very efficient and before I could scrunch myself up into a ball of fear and trepidation the camera was in! For those of you facing this procedure in future: there is very little pain involved.

In any case, I soon forgot about pain and discomfort; the doctor was speaking. "Can you see the tumour?" I swear he sounded all excited about it. He swished the camera around and was all excited again about some red lines appearing on the screen. "Hm, yes," he said "that's unusual".

Once back on the chair he gave me an instant diagnosis: "you need to come in for a CT scan, a biopsy and an operation, all within the month. We'll get a better idea of what's wrong after the scan, but you appear to have a tumour on the inside of your bladder, probably due to previous radiotherapy treatment." I had treatment for endometrial cancer more than a decade ago. (Smokers beware: smoking is the other cause for bladder cancer!)

"If you agree, sign here and I will put you on the fast-track cancer list right now." Naturally, I signed. What else was I supposed to do?

Yesterday, Friday, was a very strange day for me. I got up very late, didn't get dressed until after one, had lunch mid-afternoon, ate lots of chocolates and jellies, read, scrolled the web, had a long daytime nap and watched TV. 

Today is a little less disjointed, I am still feeling shell shocked but my chocolate consumption has gone down. And I got dressed before coming downstairs! I took a stroll round the garden and closed my mind to the weeds. Weeds are what happens when nothing else does.

You might not believe this: I am also waiting for an operation on some skin cancer on the back of my head! BCC is a mild form of skin cancer, easily taken care of when you go early enough; I am dithering when to have it done, privately, because the NHS waiting time is about twelve months.

For the moment everything is on hold, Physiotherapy for my knee will stop after Monday, BCC operation will get pushed back and everything else will be arranged around whatever hospital appointments I am given. There are decisions to be made about practical matters and just-in-case plans must be finalised.

If you feel like wishing me luck, please do.

Still alive and ranting

 Old age is an insult. Anno Bloody Domini. It sabotages a mind of which you were once mildly proud. There you are, having a conversation, holding forth, when you realise that you have lost the thread. Not only the thread of your argument, you have lost names, the names of anything and anyone that once flowed from your lips without the least effort. You are flailing, waffling, using filler words, you find yourself becoming inarticulate and ignorant, and it bloody hurts. Paralysis of the brain occurs. Suffocation of the brain.

Not only does your body let you down, your mental acuity is a thing of the past. Physically and mentally you stumble, stub your toes, slow down until you resemble those old people for whom you felt sorry, who take up time and space that the young and active could utilise so much more efficiently. And you, you personally, were never going to be like them. Never. You would make damn sure of that.

Old age is an outrage. There is nothing wrong with protesting about the human condition but that's about all you can do. Just take it on the chin. Consider the alternative.

Maybe it's my long period of limited mobility and enforced partial solitude that has brought this on. I hope so.

See you soon.

Sorry everyone

 I’m having some health problems, nothing fatal, just very painful. Doctor says it might last a month yet. Speak to you soon.

Love, Friko.

Autumnal Thoughts

 

 Summer's ended, Autumn is here. The cherry tree leaves are turning.

A day of rain and wind today, I've not been tempted to go out at all. The seasons turn so quickly, we had several days of high temperatures earlier in September, now it's jumper weather again. 

Cyclamen are out in force and shrubs are glowing their final hurrah of the year before they settle down for winter. The hedgehog visits the terrace at dusk, almost on the dot of seven now and I must remember to put out food betimes. It'll have to be earlier and earlier I suspect, until they go into hiding for winter. There are often two of them and there may even have been three last night. By morning the dish is licked clean.

There seems to be a trend at the moment for decluttering. I've wanted to do it for a long time but never quite got round to it. I have now, but I'm starting gently, with a drawer full of digital cables and such, all the stuff that comes with new gadgets which you never use. Also theatre programs of the last 30 odd years, London Westend ones, and from all sorts of theatres in the South East, South West of the country, the Edinburgh Festival and the Midlands. My, we must have seen hundreds of plays. I am keeping the Stratford programs for now. I don't know quite what to do with concert and opera programs. They will probably end up in recycling. These things cost a lot of money, yet you buy them, read them and put them into a box somewhere.

A young woman took them. I had asked the local book charity shop if they wanted any. No they didn't but they might know someone who does. All my unwanted programs are going to be exhibits in a tea room in the Shropshire Hills, for customers to look at while they recover from long hikes over a scone and a cuppa. She was a very pleasant young woman, within the first ten minutes she had confided half her life story to me, her past and plans for the future. She and her partner also rescue dogs in the next county, which pleased me no end and made handing over two large boxes full of programs a pleasure. Jennifer, the young woman, is interested in stars of yesterday and has posters of what we used to call 'divas' on her walls, European film stars of the 60s and 70s; I have some posters of opera performances of the period which I might pass on to her. She promised me a freebie in March when she opens up again and it'll be interesting to see what she's done. A quaint idea, don't you think?

My son was here for a few days, one of his regular tri-monthly visits. When he comes, he does some jobs I've saved up for him and he always takes a load of stuff to the local recycling centre, often needing two or three trips to get rid of it. There is also a day in the middle when he offers to take me anywhere I can't get to now, either because I no longer drive or it's just too far. You'd think I'd ask for a trip to somewhere special, somewhere of great interest, somewhere totally out of my reach now. Sad to say, I can only come up with a particular garden centre in spring and summer and a very posh supermarket the rest of the year.  What a sad state of affairs when my heart yearns exclusively for plants and fancy groceries. I couldn't even take him to the restaurant I'd promised him, the place was fully booked and we had to make do with the nice but ordinary White Horse, the local pub.

We spent a few pleasant days together; we don't have a great many interests in common, but we are family and family matters. We have the past, of course, life in Germany, where he spent his formative years, so we always have the German side of the family for reminiscing over. At one point we mentioned his sister with whom he also has little contact and when I asked if a reconciliation between her and me would ever be possible he said  "No Mum, that ship has sailed."

That must be one of the saddest phrases in the English language.

Apart from decluttering I am also trying to sort out financial and legal matters, which meant going through two desks. Would you believe that I have bank statements from over twenty years ago? Not any longer. Neither do I any longer have ancient receipts and invoices and credit card slips. What on Earth was I thinking? Sure, keep them for a year but don't file them away tidily in envelopes marked with the year where such transactions took place. Last century, anyone?

While I've been typing night has fallen and I quickly rushed out with my dish of cat food for the hedgehogs. Now of course I will have to loiter by the back door to await their arrival.

I've been feeling a bit gloomy again hence the delay in posting; Perhaps all this decluttering means that I am tidying away one kind if life and starting another? Who knows.