Taking longer than I expected

It has been 12 days now since I came home from hospital. I knew that I had become very weak during my time in hospital. I did think that after a few days at home would feel more or less back to normal. After all I didn’t have any surgery this time. I was treated with intravenous antibiotics.

I am gradually managing to do slightly more each day but I wasn’t prepared for how washed out and frail I would still be feeling at this point.

I am still sleeping a lot. I’m nolonger in excruciating pain but still have some discomfort.

Apart from the extreme pain I experienced at the start of my hospital stay I had a complete week in stress from having awful diarrhea all day every day. I feel let down by the hospital because no matter how many times I asked for something to stop the diarrhea I wasn’t given anything. The diarrhea I was having was instantaneous. I didn’t have any warning. Thus in itself was stressful. Rushing to the toilet up to 30 times in one day. The frequency of bed changes that I needed. The knowledge that the staff were really busy and didn’t need. That extra work also played on my mind.

Once I was home again I took an imodium and another the next morning. Voila no more diarrhea until today. It is very draining when my body behaves this way. So I shouldn’t really be surprised that I have no energy.

I am taking iron tablets and using vitamin b12 patches so hopefully I shall start feeling more myself soon.

I’m home

After 11 stressful days in hospital I am back home. I still have my appendix in situ but have to have it removed at some point in the not too distant future.

I am currently feeling relieved to be home but very fragile and weak. I need to be kind to myself and give my body time to recover from everything it has been through.

I also need to get my head into the right space before normal service can resume.

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.

What a shock

I have had my new car for a few days now. I am enjoying driving it around. I am happy that so far I have not yet stalled the engine. I was worried about swapping my automatic for manual transmission after my last three cars being automatic. However what I don’t like is getting out and getting an electric shock each time I close the door. I am learning to use my sleeve. I’m gradually finding my way around the various functions on the screen etc. I have even managed to pair my phone. This will help when I’m out and my mother tries to phone me to see when I’m coming home.

In the last few days I have done a bit of gardening. The sweet peas are in as are the nasturtium seeds. Solar lamps are hanging in the crab apple tree and another tree that I don’t know the identity of. Solar powered garden tea lights are along the edge of the patio at the end of the lawn.

Oddly we didn’t have very much wild life in the garden. There were no Pigeons, no Doves, only one Robin a couple of times later in the day. Only one squirrel came for a visit and that wasn’t until tea time. We have no idea what was going on. I am happy to say that we have seen a robin several times and a collared dove but also the dunnock and some sparrows. We don’t often have sparrows in the back garden although they can be seen in the lilac tree at the front of the house.

Today is perfect weather for drying the washing. Unfortunately I am waiting for someone tall and strong to put our new washing line. However I have managed to hang my washing on an airer set up in the middle of the lawn.

I have been out to pick up some of my Avon brochures. I have another £80 in orders to add to my tally for April. I have more to collect on Wednesday when I shall also be putting more out for next week.

I had my second Pfizer jab on Saturday evening. I am pleased to report that apart from a slightly sore arm I have no other side effects. I’m not planning to be out partying any time soon but now that we have both had both our jabs we are a little more confident about seeing anyone else.

I have been knitting in yellow the last few days. an yellow and green striped jumper and a yellow pixie hat.

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.