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.

The sun came out today.

All through May we have had lots of rain and not much sun. For many of us we still have our heating on. After all my excitement at getting our washing line put in 10 days ago, I have not been able to use it yet.

Today the sun has been out. It has been our first warm day. I actually went out without a coat/jacket. I have seen photos of friends enjoying a drink in the sunshine. Others have been on lovely walks in the sun.

My views today have been from hospital windows. Today was the day for my colonoscopy. Yesterday l spent the day drinking 4 litres of klean prep to clear my body out. ( No food after 8am and that was only rice crispies.) My day was spent in the bedroom so I could be close to the bathroom.

This morning I subjected myself to the hospital staff. I must say that I had a very kind gentle Portuguese male nurse looking after me. He was so considerate of my feelings and comfort when he needed to insert a cannula. I had told him of my needle phobia. He took the time smoothing my hands and arms to find the best vein he could. Apparently my veins were very wobbly.

He promised me that he would only make one attempt to get the needle into me. It did take time before he finally pierced my skin. Success first time. It was then time to don the non flattering gown and paper knickers.

A few minutes later I was in the room where the procedure was taking place. I remember getting into position on the bed and a sedative being put through the cannula. I was aware of being wheeled into the recovery room.

As usual after an aesthetic I was being sick. I was informed that my ride would be here at 11.30. I asked what time it was now. 11.15. ( no way would I be ready in 15 minutes). I let him know to come back in an hour.

After all that it seems that my fickle body has yet again come up short. This is not the first time I have had an invasive investigation that couldn’t be completed.

“Procedure limited by benign stricture” Further investigations required.

Next step is for a CT scan. Oh great joys. I don’t mind these but it usually involves having another cannula.

Being unfamiliar with this hospital it didn’t help that there is construction work being carried out which made finding the drop off and collection point difficult to find. I was dropped off at the wrong side of the hospital. I was being collected from the same place. This meant that I had a long walk going to and from my treatment. A very kind make nurse carried my bag walking me back to the pick up point only to discover that my lift had managed to find the main entrance after all. More walking followed. I was so relieved to finally find my car. 2800 steps isn’t much but right now to me that was a huge effort.

Having left home at 8am I was back home at 2pm and went back to bed. Having had a deep sleep I returned to the land of the living just before 5pm. I am now starving, my stomach is rumbling. I shall be ordering a take away to be delivered tonight. Do I opt for chips or Chinese?

Tomorrow is another day. At least I can put today behind me and know that I won’t be going through that again.

I am hoping that tomorrow I shall be able to go out in the garden to soak up some 🌞

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.

Once, twice three times a doctor.

This morning my day started with a very long chat with my sister in law. We keep up with what each other is doing via Facebook buts it’s been ages since we had one of our long phone chats.

Not long after that my phone rang. It was the hospital. (Not the one I usually go to). They have got the results of my latest blood tests. I am now booked in for a telephone appointment on Tuesday afternoon.

Half an hour later another phone call from the hospital. This was a wrong number as I am not and never have been called Mary.

I have been feeling out of sorts today. I have had some news that although not altogether unexpected still shook me up a bit. I felt the need for cake. So before putting out my books I went to the shop. I was wandering around at a slow plod when my phone went off again.

This time it was the doctor I spoke to 2 weeks ago. She apologised that everything wasn’t progressing as fast as she had hoped. My latest blood test shows that my iron level is steady. Still very low due to iron deficiency.

She has prescribed iron tablets but I’m not to start them until I have had my telephone consultation with the hospital. Depending on how they want to proceed the iron tablets might be a no no. She says my vitamin b12 is ok, on the low end of the range but not too low.

At the moment everything hinges on this telephone call on Tuesday. I want to get this sorted out but I’m worried about what it will lead to.

I’m not looking too far into the future just taking it one step at a time.

I had been hoping to write something light hearted today as my last few posts have been a bit depressing. Maybe tomorrow I will have something happier to post.

Fractured not broken

The other night and it was at night I wrote a post about waiting. I wrote it because I had been reading Abbie Greaves book The end of the Earth. It had taken me back to when I was a young adult. I couldn’t sleep because of the thoughts going round and round in my head. Once I had written it and I apologise I didn’t read it through so there are bound to be errors.

One of my new blogging friends Bitchy after 60 commented that with everything I have been through it would have broken most people.

That post only scratched the surface of what my life has been like in the last 50+ years. I’m not broken yet. I have many emotional fractures and my body is falling apart but nothing has broken me yet.

Last night mother asked if I had experienced depression or anxiety in the last year. The question was in relation to the covid-19 pandemic. The answer is no. I am lucky to have technology that has allowed me to keep in contact with family and friends. I could also order whatever I needed online. I also have plenty to keep me occupied. My garden, reading, knitting etc.

That doesn’t mean I haven’t experienced anxiety or feeling in low spirits. I have but more in respect of my health than the pandemic.

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.

You could say it’s been a cr*p morning

This morning I ignored my alarm. That was a big mistake. I had no reason to get up at that time. My day would be mine to do what I like when I like. Apart from getting mum her breakfast, lunch and dinner. How wrong could I be.

Eventually I roused myself at 8.40 good by now mum will have finished in the bathroom and I can get in there. I have to get to the bathroom very quickly once my body is awake. My bowels don’t wait for anyone or anything. There have been occasions when I have got up only to discover that mother is already in the bathroom. I sit on my bed in agony waiting to get in there. Often not making it in time.

She is usually in there between 8.00 & 8.30 so I like to get there before 7.45 or after 8.45. This morning I couldn’t hear any of the noises that usually tell me she’s in the bathroom. Her walker bashing the door on the way in or out is a sure indication. So this morning it was quiet. I’m safe to use the bathroom.

As I was going in there I thought I heard a faint voice calling my name. I made it to the toilet without incident. I heard my name again. Not sure if it was my imagination I called out “just a minute”. There it was again my name being called over and over again. As quickly as I could I finished up and went to my mother’s room. She wasn’t on the bed. I knew she was in her room because the stairlift hadn’t gone down yet.

I found her on the floor beside the bed. I helped her into a sitting position and placed a pillow behind her back. I got her to press the button on her emergency necklace. ( I insisted she had one years ago when she was having falls when living alone). Unfortunately the speaker is downstairs so I had to go down to the dining room to speak to the operator.

The operator put me on hold while they spoke to the ambulance service. By then I was in trouble. Luckily I was wearing a long nightgown. I couldn’t stop my bowels from working. Why does it have to happen to me!. Finally I was able to rush upstairs managing to keep most of my accident from going everywhere. I quickly had a shower and threw in some comfortable clothes. Cleaned up the carpet in the hall then opened the front door. The ambulance had just arrived.

It took both men a lot of effort to get her standing and into a position where she could sit on the seat of her 4 wheel walker. They were unable to get her onto the bed. It was a good 5 minutes before she was sat comfortably on the walker without slipping off.

They did the usual observations, blood pressure etc. (High). They wanted to take her to hospital but she was reluctant. What she wanted was to get to the bathroom as she had soiled herself. Again it took ages for her to get going. She kept saying that she is not usually this slow. (She’s not usually much faster). Once in the bathroom she needed help. She was trying her best to sort herself out but she had managed to get poo all over her hands so everything she touched was also getting covered. I helped her as much as I could in such s small space. Between us we got her into clean underwear ( not clean anymore). One of the paramedics helped me get her standing so we could get her clean (for the moment) pj bottoms on.

Next she wanted to lie on her bed or go downstairs to sleep in her armchair. The paramedics talked about taking her to hospital but she said no. However struggling to walk the few feet along the landing she was hanging on to the banister. She asked me to get her wheelchair so she could get to the armchair. At this point it was blatantly obvious she needed help and she finally agreed to go to hospital for more observations and assessment.

I have now cleaned the bathroom. I should have done it sooner but I couldn’t face it for a while. Both our soiled clothes are in the wash.

I have called the hospital but they are very busy and couldn’t tell me much. They are waiting for blood test results.

update

Mother is back home now. Antibiotics for a possible chest infection. Occupational therapist is arranging for a therapist to visit her at home to assess her needs. She has flat out refuses any additional care.

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.