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.

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.

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.

I’m not like them

I have often been told that I come from a long line of strong women. I am told that I am a strong woman too. I have memories of my Great Grandmother Alice but only as a very old woman. I have memories of my paternal Great Gran (mostly of having to stay with her and being fed undercooked eggs for breakfast). I understand that both these women were strong willed women in their day.

I obviously have memories of both my Granny and my Grandmother. My Granny was one of my favourite people in the world. I can’t in all honesty say that I knew a great deal about her life but I loved her dearly. She was taken away from us far too soon, She had a massive heart attack in the night when she was just 67. My Grandmother was a lady who I wasn’t so close to when I was growing up. I grew closer to her in her later years. How many women in their 90s complete a degree with the Open University.

My own mother has always been strong. My father wasn’t inclined/able to support us properly so my mother trained (whilst bringing up 3 teenagers) to become a Lawyer. Life wasn’t easy for my mother when we were small. She did what she could to make a better life for all of us.

During my adult life I have been reminded by my mother that we are strong women. I have been told by others that I am so strong. I struggled to bring up 4 boys whilst being married to an alcoholic. I survived stage 3 cancer in my late 30s. I fought to get through a nasty divorce. I managed to keep myself and 4 boys going through financial struggles following my divorce. Then I remarried and found myself hitched to another alcoholic who was also a narcissist. I managed to get out of that situation.

All my life I have been reminded that I am strong and come from a line of strong women. I’m not though. I have never felt strong. I have done what I had to do for my boys. I have always felt that I have to get through everything because I come from a line of strong women. I can’t let the side down and be the first non strong woman.

I want to be allowed not to be strong. I want to not have the responsibility of keeping up with my strong women.

WHY do I have to always be strong?

Disconnected

Six moths ago (well almost) , it was 18th August 2020. I had life changing surgery. Lockdown the first was quite easy for me because I wasn’t going out anyway. At the start of 2020 I was waiting to have surgery in early March. By mid February I was on my 4th lot of antibiotics since the start of the year. I put myself into a self imposed isolation. I didn’t want to catch a cold or anything else that would put off my surgery.

Well that plan didn’t work. When I had my pre-op it was discovered that my iron levels were far too low for me to have my procedure. My surgeon said it was all the kidney infections that had caused my iron levels to be so low. No wonder I was getting so tired all the time. I thought taking iron tablets would help but that wasn’t the case. It was arranged that a week prior to my new surgery date (3rd April) I would have an Iron Infusion. Similar to a blood transfusion.

However on the day of the infusion I went to the hospital. Very weird, security on the door stopping everyone who wasn’t there for treatment from entering. I had already discovered that the car park I usually use was out of bounds. Hospital staff only. This was the impact of the first lockdown showing itself. Corridors were very quiet. None of the normal activity. Eventually after being sent to the wrong place I found my way to Day Surgery Unit. Here I was prepped for my treatment, all the usual questions, blood sugar test, weight, height etc. The nurse went to collect the prescription. A few minutes later returning with my surgeon’s assistant.

It took a very short while to let the news sink in. My surgery was cancelled. Covid-19 had put the kybosh on that. With tears in my eyes I drove back home. No infusion for me on that day. The rest of lockdown I was still fairly weak. I stayed home and stayed safe. I knitted, I read. I took care of my mum.

Lockdown finally came to an end, my health was slightly better, I guess because I had been staying home not rushing around everywhere. I waited for the call. I was so worried that I wouldn’t get that call not in July or August or September, perhaps not before Christmas or even in 2020 at all. Why would they call me when there were all these people with cancer who needed surgery. Surely they would get priority over little old me. I don’t have cancer right now although my problems stem from the cancer treatment I had back in 2001.

My Dr disagreed, she said that my surgery was urgent, she would remind the hospital to get me in asap. True to her word, at the end of July I was told to go in at 7am 18th August. I put it down to the shock, but now realise it wasn’t that. I became very ill within days of receiving my appointment date. I could barely walk, or eat. My strength was virtually nil. I did hope that I would recover before my allotted date. No such luck! A few days before my surgery I was asked to go in at the earlier time of 6.30. We weren’t sure what traffic would be like or how long it would take me to lug my bag from the entrance to where I needed to be. (obviously the furthest part of the hospital from the main entrance). I couldn’t take anyone with me to carry my bag so I soldiered along, stopping at various seats to rest. I still reached my destination far too early. 5.45am! I don’t usually know that time exists.

Anyway. I had my surgery. At first I was horrified that my life was now changed for ever. No going back, it was so awful that I didn’t think I would ever learn to cope. I was in theatre for 6 hours and in hospital for a week. In normal circumstances I would have spent that week chatting to the other patients who came and went during my stay. Unlike me, I didn’t speak to any of them. I just didn’t want to. I was probably feeling very sorry for myself.

I came home and was still in a lot of pain as well as weak and not eating. It took several weeks before I could start to get my appetite back. Gradually my strength increased. I started sitting up instead of laying on my back most of the time. I had nobody looking after me. I was and still am carer for my mum. Lockdown may have finished but we still couldn’t have people in the house. Only our cleaner every 2 weeks fully masked up. My ex who was our support bubble is the only other person who visits.

My nurse would normally visit every day to make sure I was fine with my new reality and was able to cope with everything. She could only phone me to see how I was doing. Now almost six months later I have got used to all that my new life entails. The problems I had in the early days are now a distant memory (most of the time). I am getting used to the reordering system for my supplies.

Now I guess I should put you out of your confusion and tell you that at my tender age of under 60 I am now a bag lady. My bladder wasn’t working, it had not only shrunk but had holes in it. I wear a bag on my stomach (stoma) which I have to empty regularly throughout the day. I have a night bag which I attach to it with with a longish tube for night times. I have a strap which keeps the tube against my leg whilst I sleep. Not very often but occasionally like 4.45am today I wake to discover my bed is wet because I have become disconnected. The tube was still strapped to my leg but was no longer attached to my bag on my stomach.

It is times like this that I am glad I am single and don’t have a partner to disturb in the middle of the night, sorting out the bedding.

All things said and done although this is now my reality and it isn’t something I had ever thought would happen to me. I feel so much better now, than I had for a number of years. I still get extremely tired. I try not to do too much but I’m gradually getting stronger.

Life will never go back to normal for me but then I doubt it truly will for anyone now. I am leaning how to live my new normal.