Spanner in the works

I had it all planned out. Books out for collection Friday, Monday, Wednesday and Friday that takes me almost to the end of the month. I was late getting started this week. Then other things got in the way so there are no books out for me to collect today.

Because of my low energy levels I’m only putting out around a dozen books each time. So now I need to do a few more each time to get round to all of my customers.

I found out this morning that I am having an endoscopy next Thursday. Which means a covid test on Monday. Then self isolate from Monday to Thursday. I am likely to be feeling rough on Friday.

I am now going to attempt to get all my books out for pick up this Friday and Monday. I won’t be able to do a pick up next Wednesday so no point putting any out for then.

I did know that I would be having an endoscopy within the next two weeks but hadn’t considered that I would still have to isolate after all have had both jabs and putting out and picking up books doesn’t really involve seeing anyone.

The domino effect

It feels to me that I am experiencing the domino effect. Each domino that falls knocks the next which then leads to the next.

Dominoes

Each time I have any serious health issues I get radical treatment which cures the problem.

Unfortunately that treatment leads to another serious problem. That then gets treated but then leads to the next problem.

I am currently waiting for a date to have an endoscopy to rule out cancer. I’m feeling a bit anxious if truth be told.

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.

Reaching the Summit

Yesterday we had a visit from a specialist nurse. She came to assess how mother manages in the house and see what help she could give. Another grab rail will soon be installed.

Mother has been shown better ways of getting in and out of bed and her armchair. She has been forbidden from using the riser function of her chair. If she can do the exercises she has been given she will have more strength in her legs. This will make her less dependent on me which will be good for both of us.

Today I was out of the house for much longer than on any day since my surgery in August. I attended a mini socially distanced online training summit. It was a big occasion for me. Partly by managing to be away from home for more than just one or two hours at a time. Also for socially distanced spending time with friends that I haven’t seen for almost 18 months.

Whilst there I took a phone call from a ‘private number’ which turned out to be one of the drs at our surgery. She had the results of the blood test I had on Wednesday. Apparently I am anaemic again which explains my low energy levels recently. She has read the letter I had sent a few weeks ago. I was then grilled about my bowel problems. She is recommending that I am seen by a gastroenterologist urgently.

I am glad that my problems are being dealt with. However I am trying not to think about what this entails.

Mother survived her day at home alone. I made her lunch before I went out. She tells me that she has done her exercises. Perhaps in the not too distant future we will both be physically better off.

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.

Thursday

I think it’s Thursday today. My phone says that it is. I hope it’s not Friday otherwise I’ve missed my telephone appointment with the doctor.

I had a surprise this morning as I gazed down the garden. I was looking for bluetits visiting the bird feeder hanging from the crab apple tree. I couldn’t see the bird feeder at all so I wondered down to have a look

Those naughty squirrels had taken it away just leaving the top of it hanging there. This is what it should look like.

The contract has been signed. Next week I am hopeful of taking ownership of the new ( to us) car. We are getting a three year old deep red ford c-max

I have an appointment to have my second jab on Saturday 17th April. Mother gas hers on 10th April.

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.