Being absent in my own life

The last week has kind of passed me by. I feel like I have gone back to the first few months after my surgery. All I have wanted to do is read or sleep. I’ve been falling asleep 3 or 4 times every day. That’s not normal even for me.

I have been doing other things like a spot of gardening and a bit of avon. I have even gained a few new customers.

I have made an appointment to have a telephone call from my dr. I managed to get the earliest appointment Friday 9th April, after I was told I could ring up at 8am each morning to see if there are any available appointments that day. Whilst this is causing me a great deal of stress it isn’t urgent urgent. I have been dealing with this problem for 20 years but it is getting worse.

In the last few years prior to my surgery I was experiencing constant leakage because my bladder had deteriorated. This was very unpleasant and inconvenient but I didn’t feel unwell with it apart from the frequent kidney infections.

However my bowel problems are making me feel drained, uncomfortable and unable to do very much. Just moving around can trigger an “accident” . I have very little and sometimes no notice at all that I need to go.

Throughout the 20 years since I underwent radical radiotherapy for my stage three cervical cancer. (I know I’m lucky to be alive). I have tried to carry on with my life. This last week I feel as though I have withdrawn from my life.

Although I am my mother’s carer she is worried about me. I don’t want her to worry. Apart from not wanting her to worry I don’t think I can cope with her trying to diagnose my problems and come up with remedies.

I want to be my usual cheerful persona. I think when I see people I manage to carry that off but I spend so much time with just my mother I am sinking into myself.

Today I plan to pick up the last of my march Avon books and do a little more gardening. I hope my body allows me to do these things today.

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Square peg round hole

I know the saying that you can’t get a square peg into a round hole. I don’t think I have ever been a square peg. I think I am more of a star shaped peg. (is there another name for star shape?)

I have good days, not so good days and bad days. The last few days have been in the second category but today has been bad. I have spent most of the day either asleep or rushing to the loo. My stomach has been rumbling violently since I had my breakfast.

This evening I tried to do an econsult through my drs online site. After answering a multitude of questions it told me that I needed to either call 111 as an emergency or speak directly to my dr. I shall take the second option. My current problems are not an emergency. I have been living with this condition for 20 years it has steadily been getting worse. The last 6 months since my surgery have exacerbated my condition.

I can’t remember what I was completing an econsult for the last time but on that occasion they couldn’t help me, I was advised to speak to my dr. My health conditions don’t fit the boxes.

No antibiotics for me

I have just ordered my latest repeat prescription through the online site linked to my Drs surgery. At the top of the side bar on the website was a tab for antibiotics. I am glad to say that I have not had any antibiotics since my initial recovery from my surgery. During 2019 and 2020 I was on antibiotics so many times that I started a diary specifically for my antibiotic courses. This time last year I had been on 5 courses since the start of the year.

Because of the problems I was experiencing I was getting numerous kidney infections. It became a vicious circle that ultimately prevented me having my surgery in March 2020. My PRD (pelvic radiation disease) was destroying my bladder. This meant that I was prone to kidney infections. These infections affected my iron levels. The longer I waited for surgery the more infections I got, leading to lower and lower iron levels which in turn rendered me unsuitable for surgery at that time.

In order to get my iron levels to a suitable level I needed an iron infusion. (Iron tablets would take too long and not be as efficient). However Lockdown came along and prevented my infusion from going ahead. (I was already at the hospital being prepared for this treatment when it was cancelled.) I later began a course of iron tablets which over the following months did indeed increase my iron levels. (Not fully but enough).

At the time of my surgery I was again very unwell with a kidney infection. Along with the frequent infections I had over the last four or five years I had several that were so bad I was house bound for weeks/months. The first time I was ill for four months whilst I went through a variety of tests and scans to check that my cancer hadn’t returned. The second time it happened it was only six weeks before I was strong enough to leave the house. This last time it began three weeks before my surgery, I was still very weak from the infection as well as the surgery when I came home from hospital.

I am so relieved that my surgery although dreaded at the time has hopefully put an end to these kidney infections. No more antibiotics (at least not for kidney infections) is a blessing. No more having to deal with side effects like a horrid taste in my mouth for a week at a time or having to work out what I can or can’t eat when because I can’t have milk products within 2 hours either before or after taking the tablets. For now at least I am free from that life.

Is it hot in here?

Women of a certain age suffer from hot flushes. In theory this shouldn’t be a problem for me. I kind of went through an early menopause when I was a mere 39. I had hormone therapy at the time so I think all in all I got away lightly. For many years after this I was always warmer than everyone else. Prior to my cancer treatment I always felt the cold. Then suddenly I was in shorts and a t-shirt when everyone else was in jeans and jumpers. My palms were sweaty. I would say that I had an internal heating system after my radiotherapy. Over the years I came across other cancer survivors who also experienced this feeling of being hotter than everyone else.

I couldn’t stand to have hot feet so rarely wore socks even in winter. I would get into a panic if my feet or even my hands became overheated. My work colleagues would ask me weren’t my feet cold when I was wandering around in sandals and bare feet. Then gradually over the last few years that over heating wore off. I started to feel the cold again. Get this I have even started wearing socks everyday unless the weather is hot.

In the last few months I have found myself taking my jumper/cardigan off at various times through out the day. By mid evening I am beside myself tearing off my outer layer if clothing. Then comes bed time. I am so so glad that I sleep alone these days. Who would want to share a bed with me right now. Only a mad man! One minute I’m under the duvet, then I have to stick one leg out (something I have done for years). That doesn’t work my body is in panic mode so I have to completely remove the duvet. My shoulders get cold so I pull the duvet back but my legs are still hot. My head is sweating. Even though its winter I am putting on my desk fan to cool me down. I have a cool pad for my head. Boy that thing is cold but after a while even that becomes warm. All night I am duvet on duvet off, fan on fan off. Cool pad under my head, cool pad removed.

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A few weeks ago it occurred to me that this situation has been worse in the last six months. In the middle of the night when I was having a difficult time I posed the question to the appropriate facebook group I belong to for other ladies in my situation. The answers came flooding back, yes this is a side effect of the surgery I had back in the summer. From what I can gather, this goes on and on and on for years. The surgery has caused a hormone imbalance. As if I didn’t have enough to contend with.