When will it end?

What with all my poor health of late. I just wonder what life has in store.

I have numerous friends dealing with horrific health problems. No I’m not the only one.

Then last week my gorgeous, smart, loving daughter in law had surgery last week for an ectopic pregnancy. That would be bad enough but this was the second in under a year. Making this not only a tradgedy in itself but life changing for her and her little family. She so wanted a second child.

Several months ago I learnt that my best friend from school had lung cancer. If that wasn’t bad enough her brother died of covid at the start of the year. My friend and I had lost touch for a number of years when our children were young. In those days there were no mobile phones and no internet. I found her again through Facebook about 8 years ago.

We both had busy lives and always promised we would meet up again at some point. I had moved away from the area 33 years ago. Our communication was intermittent but we were still in each others thoughts. During one of our more recent communications I had promised that providing I was well enough I would make the effort to go and see her this summer.

Unfortunately it is now too late. My dear friend passed away peacefully yesterday morning.

Why is it that the good people in this life have to suffer so much.

Was my body ever a temple?

I’m thinking obviously about the saying that your body is a temple.

This is how I thought of my body three years ago https://ladyinredagain.com/2018/01/10/my-body-is-a-temple/

Now I think my body is more like a colander. Until you plug the holes the water or in my case iron will just keep running out.

Drained

I am sad that Prince Philip died today. I was hoping he would make it to his birthday. I was on my way home from collecting my prescription when I heard the news.

I was up early this morning as I was waiting for a telephone appointment with one of the doctors at our practice. I didn’t know what time the call would be and I didn’t want to miss it.

Just before 8.30 it occurred to me that I should take my phone off silent mode. Oops, I had missed the call I was waiting for by 3 minutes. 3 minutes! Can you believe it?. I waited for the call back. Finally 2.5 hours later it came through. Now in preparation for this call I had written a letter explaining my current situation ( to save time). I addressed the envelope for the attention of the Dr phoning me on 9th April.

I had delivered the letter 2 days ago. I wrongly assumed this would be enough time to get it to the correct doctor. He hadn’t seen it so I had to explain about my cancer, pelvic radiation disease and consequent ileal conduit surgery. My current condition since the surgery. We had a good chat about it and he explained what he thought would be the best plan moving forward, he is calling this the corn flour method.

He sent the prescription through to the pharmacy. If this doesn’t work there is another route we can try.

I collected my prescription and came home. You could have knocked me over with a feather when I looked to see what I had got.

What the heck! I very nearly phoned the surgery to make sure this wasn’t a mistake.

I checked online to see if this is a suitable remedy for bile acid malabsorption. Apparently it is. I had one sachet after my lunch. I was in the loo within minutes. Ok this might just be a coincidence as it hasn’t had time to do anything. Over the next couple of hours I have been in the loo several times and my stomach is hurting. I’ve only had one dose so I shall give it a few days to see how it goes.

I’m not looking forward to the next few days if it doesn’t help as I am going to be taking my mum for her jab tomorrow and dog sitting for my ex while he has his on Sunday.

At the moment I am feeling drained and want to curl up and sleep.

It’s my birthday on Sunday but I’m looking forward to Tuesday when if all goes well I shall get to see my family.

Today I am grateful

I feel as though I have been moaning about my lot in life quite a lot lately. So I have decided to think about the things I am grateful for.

  1. My family
  2. I will soon be able to spend time with my family again.
  3. Sunshine
  4. Having a garden
  5. The ability to bring life into our garden
  6. The wildlife that I get to see from my armchair
  7. Living near to various beaches
  8. Avon – my sanity
  9. Knitting
  10. Reading
  11. Technology – video calls
  12. Technology – research and talk to others with my health issues
  13. A roof over my head
  14. Enough food to eat (even with an unconventional diet).
  15. Being single
  16. Friends
  17. Independence
  18. Sense of humour
  19. Love of colour
  20. BEING ALIVE

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.

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.

FEAR

I have recently been following The Hot Goddess. In truth she started following me first. The last post I read was about fear. It got me thinking about fear too. She talked about her fear of heights and her drive along a road in Montana that scared the life out of her, it reminded me of the trip I made on my honeymoon with second husband. Here

I personally don’t have a fear of heights but that doesn’t mean I am not fearless in certain situations. I really don’t think I would be able to go on any of those glass walkways at various landmarks. I don’t take risks, I will look over the side of a cliff but from a safe distance. I do have a fear of rodents of any kind, yet I am fine with spiders.

Are you aware that there are two very different definitions of FEAR.

Forget Everything And Run which I guess is the more common reaction to fear.

Then there is

Face Everything And Rise

I do try to go with the second definition but that doesn’t always work. For many years I would do anything to avoid rollercoasters. After I recovered from my /cancer treatment I decided that I needed to learn to live life not just let life pass me by. On a trip to Belgium with my #2 son’s football team I went on my first rollercoaster at a water park we visited. I actually enjoyed that.

Being an introvert it is not easy for me to approach strangers. Joining Avon has helped me with that. I can’t always do it but I am getting better at talking to people I don’t know. Either to ask if they would be interested in becoming a customer or a Rep or just for a chat about anything.

In 2019 my #2 son was getting married and asked me to do a reading at the wedding. I’m ok talking to 2 or 3 people but a gathering of 6 or more leaves me feeling extremely red in the face with my eyes watering. It really isn’t something I enjoy. So imagine how I felt being asked to read to 100+ people mostly strangers to me. I did it though and I am very proud of myself.

More recently I had to face my fears on medical grounds. I was facing major surgery which terrified me. It wasn’t the operation that scared me but the waking up and recovery together with the change in my life that was that I feared. Each time I was given a date for surgery I bravely psyched myself up it was cancelled. Third time lucky. I tried not to think about it until I had no choice. I just had to get on with it. Last week I had to face my fear of needles. I kept myself busy until half an hour before my appointment. What made it worse for me was that on arrival I had to join a long queue. If I could have just gone straight in and got it over with that would have helped. However I held on to my courage and gradually moved ever nearer to the dreaded needle.

What has you trembling with fear? Do you face it or do you run?

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.

Girls are doing it for themselves

This is a topic that I am passionate about but I am really in two minds about this item that was on the news this morning.

Researchers at Queen Mary University of London have developed a home smear DIY kit for cervical cancer tests. The kit allows women to take a vaginal swab or urine sample at home and send it into a lab, where it will be tested for chemical changes. The NHS aims to get around 80% of women tested, but last year only 70% of people attended their cervical cancer smear tests last year.

If successful the kits will be available in three years time.

I have been very passionate over the years

You may or may not be aware that in early 2001 I was diagnosed with stage III cervical cancer. I was very conscientious about always having a smear/pap test whenever I was called for it. In those days in UK that would be every 5 years. It was also routine to have a smear test during a 6 week post natal check up. My youngest son was born in December 1995. I had my post natal examination in January 1996. I was then due for my next test in January 2001. In April 2000 I began to have bladder leakage. I was reluctant to go to the doctor about this. After several months of this (I blame Tena Lady adverts for the idea that it is normal for women to develope leakage). Finally in late 2000 I had an appointment with our doctor who referred me to see a Urologist at our local hospital.

I had my appointment but was told that he couldn’t examine me properly as there was a blockage. A week later I saw a Gynaecologist who also attempted to examine me. He attempted to perform a smear test. This didn’t work as I was bleeding to much. Next I attended day surgery for a biopsy. Weeks later (9th March 2001) I never forget that date. I was given the news that I had a tumour the size of an orange. I later discovered that it was 7cm x 8cm x7cm. I was too large to be removed by surgery.

The next few weeks were take up with a variety of tests and measurements and 3 tattoo dots on my back ( for radiotherapy purposes). The treatment I received over the following months did the trick. The tumour dissolved and in September 2001 I was given the all clear. The treatment I received saved my life. I am very grateful that I went through it but it is not something I would want anyone to go through if it could be avoided. I know without a doubt that if I didn’t have treatment when I did I wouldn’t have made it to the end of 2001. For me now every day, month and year are a bonus.

If at that time smear tests had been performed more frequently, it’s probable that my cancer would have been picked up sooner and treatment less invasive.

Over the years I have come across or heard of women who don’t go for their smear test. It’s free! It takes a couple of minutes. It’s a life saver. It’s a no brainer. I get very cross when women say they don’t go, it might be a question of dignity or vanity. It might be because they are scared. It could be the thought that it was uncomfortable or even hurt. Let me tell you that whichever the reason, its a darn sight worse to go through the treatment for cancer.

Back to the news segment this morning. It is being proposed that it in a few years time if trials are successful women will be able to do the tests themselves. On the one hand if this will encourage more women to go through the process that has to be a good thing. On the other hand are these kits going to be fool proof. I know that nurses and doctors are not always 100% able to get the right samples. Yes I do understand that these kits are to be more about getting a swab rather than gathering cells but is it going to be accurate enough and not give a false sense of security.