Rainy Sunday

I’m afraid to say that I’m in danger. Only a teensy bit of danger but it’s there. I have never been a particularly domestic woman. I do what I need to. I don’t enjoy cooking or cleaning.

Today I dodged the showers to pot up some of my plants. I managed to get 3 pots done before the heavy rain started again.

When i went into the kitchen to get myself some lunch I did something that is very rare for me. I made a Victoria sponge cake. Which we both had a slice of with our late afternoon cup of tea. It must be over a year since I last made a cake. Certainly not since my hospital stay last August, or even the weeks leading up to that as I was too poorly.

I have also occupied my time today reading and knitting. I’m making the sleeves for a cat face jumper. This will be my third one. I have made two for my granddaughter. One with a cream background and one grey. This one is white and has been commissioned by my daughter in law for her niece.

During the afternoon while I was knitting we watched two episodes of a Danish crime serial. I generally listen to the TV more than watch but with the foreign programs that mother likes I really have to keep up with the sub titles if I want to follow the plot.

This afternoon seems to have flown by but then I realised that I fell asleep for about half an hour.

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

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.

A cold lunch

Monday morning brought flurries of snow. By the time I set of to get my car fixed it had been snowing constantly for at least 3.5 hours. Not that it was doing anything much. It was settling but it was such tiny granules that it didn’t look much more than a layer of frost.

Driving to the garage you wouldn’t have known there was any snow. The roads were completely clear. Arriving at my destination, an industrial estate I drove around and around for 20 minutes looking for the garage. In the end I had to pull over and phone them. Ha ha I was behind the units I needed to find. literally just yards (or meters) away.

I parked up went into the unit and hander over a set of keys. The young man said he would phone me when it was ready, (about an hour).

There was nowhere for me to wait. I walked down the road to a small takaway food unit. Joining the queue I awaited my turn to enter the premises to get something hot to eat. I watched the occasional wagtail flitting around. Never staying long enough for me to remove my gloves to take a photo. I like to take photos of wildlife.

Once I had purchased my hot pastry I walked a little further along the road, having spotted a picnic table. I settled onto the bench to wait out the time. With flakes of snow swirling around I warmed my fingers eating my hot pastry. It didn’t take very long before my fingers were hurting even with woolen gloves.

After about 40 minutes I couldn’t sit there any longer. I made my way slowly back to the unit containing my car. It was too early so I continued further on. Because I can’t walk very far I came back slowly. I did think of sinking down onto a kerb but knew that I wouldn’t be able to get back up easily. Then I spotted my car in one of the parking spaces. I hurried, if you can call my hobble hurried to find out the verdict. Apparently it wasn’t fixed. I wasn’t charged because they were unable to put it right. He gave a recommendation of where to take it next though.

If you can believe it I the had trouble getting into my car. The driver’s door refused to open. I had to get into the passenger side and climb over. Not easy.

Now I begin the search for another newer car.

Secrets

This one is from 2010

some secrets are good
some secrets are bad
this secret was just a secret
neither good or bad
but now it is nolonger
the cat is out of the bag
they all know
there is no more hiding the truth
they are relentless
they will not rest
a secret once revealed
is no longer a secret
in time it might be forgotten
but it won’t be a secret again

Now that they know
they will bully and cajole
until they get what they want
they will plead
some might beg
demands are made
no excuses are acceptable
now that they have realised
mother makes the best roast potatoes ever!!

What they don’t tell you

As I have said before as in my last post, in 2001 I was diagnosed with stage III cervical cancer. In September (just a week or so after 9/11) I was given the all clear. My treatment had been successful. Yippee, hurray, I got my life back. I remember one of my boys saying “I’ve got my mummy back”. It was a time to celebrate.

What they didn’t tell me (I was told a few people have long term bowl/bladder problems). I would from then on be terrified of food that I had always loved. I look at the fruit bowl with longing. Grannie smith apples beckon to me with their glistening green peel. Crisp pears appeal to me. Peanuts and Cashews tempt me. In short anything with fibre is dangerous to me. Last week I treated myself to a small handfull of dried fruit in the evening. I woke up in agony and had to rush to the toilet not quite getting there in time.

I can and do occasionally eat small amounts of the foods I desire but fear. I have to plan when I can eat these things ie when I don’t expect to be out of the house for long the next day. Going for long walks are a thing of the past unfortunately. Apart from the time the activity makes my bowels work harder.

As I talked about in my last post ” the cost of surviving cancer” my bladder is badly damaged and I am now awaiting major surgery to make my life better. However over the last 18 years although my bladder has been a problem it has been my bowels that have made my life so difficult. It is only the last year that my bladder has over taken my bowel problems.

This doesn’t mean that my bowel problems have become less annoying. For 18 months until this April I was delivering parcels for a living. Not the best career for someone with my problems. I would be working when I would get a feeling and have to make a mad dash either home or to the nearest place where I could use the public toilets. I didn’t always get there in time even though it might have only taken me 5 minutes. Many times I only get seconds let alone minutes notice that my body is about to eject it’s contents. I can’t begin to count the number of times that I have needed to get completely changed and showered. During the years I worked in an office there were times I had to dash home to get cleaned up.

I love to wear pretty clothes, skirts, dresses, bright colours. I have had to learn to wear clothes that are dark (black or navy trousers) long tops that camoflage any accidents that may occur.

I wonder how many women would think twice about not being tested for cervical cancer if they knew that apart from the treatment which can be harrowing. If they knew that their reluctance to under go the indignity of a smear test could lead to a life like mine.

During the months of treatment there are rules that have to be adhered to. There are reasons for these seemingly odd rules. When I attended my first radiotherapy session (following weeks of tests measurements, scans etc) I was given a list of foods I couldn’t eat. Basically I could only eat food that is generally considered to be unhealthy. I still keep to this diet now because my body gives me no choice. I couldn’t wear perfume. Showers were out. Baths had to be luke warm and no bath oil or bubbles. How disconcerting to be laying in a luke warm bath with nothing to hide the floating hair. I didn’t lose the hair on my head as I didn’t have chemo, but the hair on my body.

How many women would willingly put themselves through all this for the sake of a five minute appointment if they knew what they were letting themselves in for.

I know I am lucky to be alive, others didn’t make it, however I wouldn’t wish anyone to live this way if they can avoid it.

Stepping back

Right now I feel as though I have stepped back two years to when I was ill for 4 months. I have very little appetite, it is an effort to eat even a slice of bread. Consequently my energy levels have plummeted. I find myself feeling cold particularly my upper body and spend hours in bed sleeping fully dressed with the duvet tucked under my chin.

Not so long ago I was prescribed some tablets from the hospital to help with my bladder problems. I didn’t know if it was a coincidence but at the same time that I started taking them I started getting the painful shivery flu like symptoms that I used to get when I had  kidney infections. After a few days I stopped taking the tablets to see if that helped.

I went to see the Dr, she confirmed that no infection was present. I was advised to wait until I felt better then start taking the tablets again. At this point I had also been struggling to eat properly for maybe a month or so. Some days have been better than others.

On Sunday 31st March I took one of the tablets again as I was feeling better just a little on the weak side. By the evening I was feeling not right, by about 9pm I was having the painful shivery symptoms again. Luckily I wasn’t working on Monday but felt so bad that I again spent most of the day in bed. By Tuesday it had worn off a little. I went to work as usual (Tuesday is normally the quietest day of the week). I loaded up my car then went home or an hour to rest before doing the first part of my round. After an hour I had to go home again for a break. What I would do in 2 hours took me 4.

On Wednesday I went off to do my work knowing that I would have to keep going home as I had done the previous day. Because of my feeble state I left about 18 parcels behind I knew I didn’t have the energy levels needed. Again I went home had a rest before setting out again. After an hour I went home. I repeated this pattern, apart from my sorry state my car decided to play up. Each time I tried to restart the engine it was getting harder and harder until it decided not to start at all. I still had an hour’s worth of parcels to deliver. I phoned RAC and was told it could be upto 3 hours as the rush hour was about to start shortly. After waiting about half an hour I tried the engine again and it did start although reluctantly. I managed to limp my car home. I wasn’t going to risk it stopping.

I thought it only fair to let my field manager know what was going on. I wasn’t due to work the following day, plus my car was booked in to the garage for a safety recall. Funny how in the days leading up to going into the garage my car had started playing up, overheating light flashing, If I turned the heater up I was suddenly plunged into fog.

Anyway I decided that I needed to take Friday and Saturday off so that would give me Thursday through to Tuesday to build up my strength again. The stress this gave me in trying to find someone, anyone to cover my round for a couple of days was more than I needed. I told my field manager that because of my health I had decided to give up my round. We had a chat later in the day and I will not be doing any more parcels until I feel fit enough. When I feel up to it I can go back and do one or two days when I want to. For now my priority is to get better.

In this past week I have done nothing for my Avon business I am a week behind with putting out my books and I have a few boxes that I have yet to unpack and sort for my customers. Now that I am not doing the parcels for the moment, I am determined to catch up with my Avon.

I think that when I was ill 2 years ago I just let myself get swallowed up in it. This time I am adamant that I will fight it and get my strength back sooner rather than later. I have to be strong enough to make the journey to see my son and grandson next weekend and again on 27th for his first birthday.

I took my car out for a run to try to clear the fuel blockage. It was really noisy today, I was just starting to think about pulling into a layby. Just then the oil light came on. followed quickly by a clunk, there was a cloud of smoke and the car cut out just as I reached a slip road. (my first and only piece of luck). It took an hour and a half for my rescuer to arrive with his RAC van. It took him less than a minute to decide it was the Cam belt. So my car was towed home. He wasn’t able to get it near our home so he left it in a car park further up the road. This looks like it will be an expensive problem. By the time I had staggered home from where my car now is I was as white as a sheet according to my Mum. The poor RAC man had to put up with me retching all the way back.

Update

As it turned out I was too ill to leave the house for 2 weeks. My car was towed to a local garage where the damage was assessed. It was going to cost almost as much as I had paid for the car to get it running again. In my state of ill health I couldn’t think about it so made the decision to have my car scrapped.  I now have another car, one that has 5 seats instead of the 7 my previous car had but the boot is big enough to accommodate my mother’s pink wheelchair. I have not gone back to delivering parcels. I am doing Avon but barely have the strength to be out for an hour at a time. I sleep a lot too.

I am frustrated that I have not been able to step back into the life I had before falling ill in the spring. I am now in a routine of quiet companionship with my mother. I am now officially her carer. This was not something either of us could have envisioned a year ago. It would be easy for me to say that I am not going to carry on doing my Avon, I’m just too tired but I am continuing because it gets me out of the house, meeting people, getting some exercise and fresh air as well as a small income. I am gradually increasing my business, I’m definitely a tortoise not a hare. It allows me to pay for my own fuel, phone bill and buy gifts for my family without having to ask for a hand out from my mother.

My Decision

Around 10 years ago I wrote this piece about my decision to divorce the other parent. How I felt 2 years after the event.

It has been a couple of years now and I don’t have any regrets. Some time ago, I think it was the middle of last summer my mother asked the question.

‘If you had known how hard it was going to be would you still have done it?’

I consider this carefully before replying. I am not sure why as I knew the answer, there was never any doubt in my mind.

‘Yes most definitely, it was the best thing I could have done.’

Indeed it was the only thing I could have done. I had given it my best shot. 19 years of my life I had given to that man.   But the day had come when I realised that enough was enough. He couldn’t understand it when I told him I didn’t want to continue living with him. He couldn’t work out what was wrong with me. We had a good marriage didn’t we, we never argued did we?

He was right in a way, as until the last few months we had very rarely had a row. Firstly he was never around to have a row with as he was always either at work, pub or asleep. (the perfect marriage in some ways).

Secondly we never rowed because, when he was around he made me feel so useless and weak that I never dared to argue with him and on the occasions when I tried to vent my anger on him he would turn it around to be my fault. Like the many Saturday mornings when he came home from shopping. (I wasn’t allowed to shop I spent too much, whereas he always bought bargains – you know the deals where if you buy this you get that free or the end of date things).  We had a freezer full of things we would never use and a fridge full of things that had to be eaten in one day but nothing for the rest of the week.

He often came in with a mood on, this would make me grumpy, (no one likes to be moaned at for no reason). Because I was now grumpy he would complain about my mood and stomp off to the pub.

During all these years he would tell me that I was

‘fat, ugly, useless with a brain like a sieve’

Now after so many years of being told this it becomes hard to believe otherwise. I believe that if you get married you should try to make the marriage work. I was not going to give up easily. I had to try to make it work. Besides I had nowhere to go and 4 children to consider. Because I had done such a good job of trying to make our marriage work he had no idea that it wasn’t working. The end of our marriage came as a big shock to him. For me it never really was a marriage. I had never been in love with him. We had never courted as such, just fell into a relationship as when we met we were both getting over broken hearts and needed someone to turn to. If I hadn’t got pregnant the marriage would never have happened.

Now, though we are divorced and I have never been happier. Financially we were never really solvent as a couple. Does anyone know a solvent alcoholic?  But we did have two wages coming in, his full time wage and my part time wage (part time!! I worked longer hours than he did for half the money).

Now it is just me and the boys, I am the only one bringing any money into the home. It has been a struggle and there are days when we have to keep our coats on because it’s too darn cold and I don’t have any spare cash to buy gas. (Yes I have had to get a key meter for both the gas and electricity). There are days when we have just 2 slices of bread and no milk. But we manage, I have not killed any of them off yet.

Are we better off now? Financially no we are worse off but I can see the light at the end of the tunnel, it isn’t going to be like this forever and now that I have a full time job that I enjoy things can only get better.

However we as a family unit are much happier. Gone are the days of dreading the door opening, wondering if he is in one of his soppy drunk moods or in a nasty bad tempered mood that has everyone either cowering behind a cushion or hiding away in the bedrooms. Gone are the days where everyone had to be silent or risk his bellow of

‘Stop that noise’ or ‘be quiet’

In the past two years there has very rarely been a cross word spoke between any of the five of us. It took me a few months to realise that he was never going to be here again chastising me for staying up late or reading when I should be doing something else. I can have friends here if I choose. (visitors were forbidden when he was here).

Our house rings with the sound of music (not always to my taste, teenagers!!) and laughter where before there was only silence broken by shouts of ‘silence’.

There is an air of confidence about us all that was not there before. I have learnt that I am worth so much more than I ever knew. I am happy, I laugh, I joke, I feel sexy, I feel worthy, I have finally come to love the person I am.

As I said at the start this was around 10 years ago. The first few years after our divorce were challenging to say the least.  Harassment charges, death threats, an injunction to keep him away. Things have moved on. We are now able to be civil, we share a grandchild and communicate far more frequently than in the past. We are even able to be in the same room with our offspring. The next big challenge will be when we both attend our son’s wedding later this year. I’m sure it will be fine. I couldn’t have imagined this 10 years ago.

Owning my cancer -part three

Ages ago now, I emailed all my female colleagues the open letter I had written back in October 2001. This resulted in a discussion between myself and my colleague, who was very forceful in stating that some people just don’t like Drs and should be left alone, she says that if she suspected that she had cancer she would rather not be treated but be left alone to die. I happen to disagree, we all have at times to do things we don’t like. I don’t like needles in any way shape or form but I put up with them because I have to. As I have said before cancer affects not just the patient but all the family. I can not even begin to contemplate what life would have been like for my four boys if I had not had treatment for my cancer.

Talking of treatment that is what I want to talk about this time. On looking back now I guess when I was told I had cancer and would need chemotherapy every week and radiotherapy daily I thought it would be simple. I would lead a fairly normal life except that I would go to the hospital every day for 5 minutes of radiotherapy. But on Tuesdays I would be there for hours for the chemo treatment which I did realise would make me feel ill. But I could cope with feeling ill once a week for a month if it was going to get rid of this growth.

What I hadn’t expected was the weeks of tests before my treatment could be started. There were chest x-rays, nuclear x-rays to test my kidneys, MRI scans to check for cancerous cells in other parts of my body most importantly to make sure my lymph glands were clear. There was the measuring to make a personalised stencil for the radiotherapy machine. Three tattoos to mark the spot so that the stencil could be lined up accurately for each treatment. All the time I felt as though I was fading away I was becoming weaker and paler by the day, the pain was increasing, but I was not going to let this get the better of me.

Eventually and it did feel as though it had been a life time although in reality only a couple of weeks, my treatment was to begin. I think I even felt a little excitement mixed in with the anxiety. This was after all the start of getting better. I had always been a fairly patient person (laid back) but these weeks were when I really learnt to be a patient patient. There were two radiotherapy machines in use in the clinic, often one or both would break down causing a backlog of patients to be treated. It became more the norm than not to have to sit for two hours waiting for my turn. But going back again to that first treatment day. Having waited an hour or more among the other people who were very ill some terminal I was called into a cubicle. Here I was given a leaflet listing the foods I wouldn’t be able to eat during the weeks of my treatment. I hadn’t been prepared for this. Because my tumour was situated so close to my bladder and bowels I would need to be careful not to eat any foodstuffs that consisted of fibre. That meant a blanket veto on fruit or vegetables, brown bread, potato skins, baked beans and very many more. There were times it was difficult to find much that I could eat. It seemed that any food deemed to be healthy would be unhealthy for me. So I began a diet of stodge, eating lots of pastries and pies, things I would normally try to avoid. Now in 2019 I am still not able to eat much food that contains fibre. I can only eat small amounts of fruit and vegetables. I love nuts but have t be careful how much and when I eat them.

But it wasn’t just the food issue, there were other rules too. No hot showers or baths, no bubbles in my bath, nothing on my skin that could react. I had to learn to have daily luke warm baths of plain water using only the minimum of things like shampoo. It was during these baths that I made the awful discovery. Because I wasn’t having chemo I wasn’t in danger of my hair falling out of my head, I wasn’t about to go bald. But to my horror I was finding that with no bubbles in my bath I could find hair floating in the water. As the weeks passed this was becoming more and more irksome, I couldn’t understand it but put it down to being normal but I wouldn’t normally notice, it was only because the water was clear. But then one day I realised why I was finding hair. My pubic hair was falling out, so much so that on one occasion my husband asked if I had been shaved, I hadn’t.

We fell into a routine where each day my husband would head off to work early, then return mid morning to take me to the hospital on alternate days. My mum did the other days, we worked it out so that one week my husband did three days and mum two then the following week they swapped. Both had incredibly understanding bosses who allowed them the time to do this for me. Each Friday my appointment was earlier so that I could attend clinic afterwards to check my progress. More opportunity to practice being patient. There were blood tests and more x-rays. I was still weak but the pain had begun to ease. I was very anaemic and required a blood transfusion the day before my 39th birthday. I did suggest they choose the blood of someone who had been partaking of gin or vodka.

Weeks passed and I knew I was beginning to feel better. My six weeks of daily treatment were coming to an end and my consultant told me that they wanted me to have a few weeks break then I would be admitted for a few days while I was given a dose of internal radiation treatment. I wanted them to forget giving me a break and just get on with it, lets get this out of the way. They wouldn’t do this, my body had taken a real battering even if I didn’t realise it. My body needed time to get stronger before the next stage of my treatment. It wasn’t long before I realised the wisdom of this.

Even now I don’t understand this but my treatment had made me so sore down below that each time I passed water it burnt so badly as though I had an open wound. One of the worst experiences there are. Then weeks later I was admitted onto one of the oncology wards. I had a single ground floor room with a tree outside my window. My room was very basic but I did have a tv although as I was to discover the remote didn’t work which meant every time I wanted to watch something I had to get a member of staff to do this for me as I was near enough immobile on my bed. The next three days were possibly the worst of my life. I was taken into theatre where three nuclear rods were inserted into my vagina whilst I was under general anaesthetic. With these rods inside me I couldn’t move much as their presence caused me a great deal of pain. For the duration of this treatment I was effectively radioactive. Visitors were at a minimum and those who could come in had to stand behind a large lead screen so I could just about see their head above it for the allotted 5 minutes. My boys were not allowed on the ward. Staff could only be in my room for a maximum of 10 minutes during any one shift. The constant sickness caused by the anaesthetic didn’t help this situation.

Finally the prescribed time came to an end and on the third evening I was given morphine so that I would be better able to cope with the pain as the rods and the accompanying packing materials were removed. What a relief that was to be able to turn over and sleep on my side. Next day I was told I would be able to go home providing the sickness had stopped. It had diminished but not cleared up completely but I managed to hide it from the staff so that I could be discharged.

That was the end of my treatment but not the end of the agony for me. Our life was still in limbo as we waited for more tests, more scans, another operation to examine my cervix to determine if all the cancer cells had been eradicated. Finally after months I was given the all clear on 19th September 2001. I thought this would mean that my life would no longer be affected by my cancer. I was wrong. The cancer itself was gone but now there were the Dr’s appointments, hysterectomy clinic appointments, hormone implants 3 monthly check ups at the hospital. I still couldn’t get back to a healthy diet. I couldn’t go anywhere without knowing where the nearest toilet was and that I could get to it quickly and easily. Before I could go anywhere I needed to take precautions which often left me doubled up with constipation. I was left with very little control over my body functions, when I needed to go I needed to be quick. But gradually over the months it did begin to improve. I still find that eating fruit can be unwise but I am no longer afraid of it.

The weight I had lost at the start of my treatment soon piled back as I continued my non fibre diet but lacked the energy to do much so didn’t burn off. Now all these years later I still have bladder and bowel problems. The cancer has not returned for which I am grateful. It took six years before I was officially signed off from hospital checks. There have been a couple of occasions when I have been ill and had to under go tests to make sure it wasn’t cancer back again. 

I am fully aware that I was very lucky to get the treatment I did when I did. My tumour (which at the time was described as being the size of an orange) I later learnt was 7cm x 8cm x 7cm. No wonder I was in pain. Others were not so lucky. If I had been given a smear test sooner maybe I wouldn’t have had such invasive treatment. Please please be vigilant and get any changes in your body checked out.

It’s a wrap

Feeling rather weak after my delivery round whilst suffering from a rotten cold, I am beginning to get my appetite back. I fancied making a cheese and beetroot sandwich providing that the bread I bought last week hasn’t gone off.

Surprisingly when I got home my husband was sat in the kitchen watching tv and drinking beer. He made me a cup of tea for which I  am grateful, and said he had bought me some lunch. I was then presented with a plate containing a wrap. I so appreciate the effort but when he told me it was my favourite I was excited to eat a mexican chicken wrap. What I found in front of me was southern fried chicken. We have been together for over 6 years, surely by now he must know that I never ever eat southern fried chicken of any description from any source.

I have lost count of the number of times we have discussed which wraps I like and which I don’t. I would rather he didn’t bother, than get it wrong every time.