Shortly after posting last night things took an unpexcted turn for the worse.
Around 3am as I was making another bathroom pilgrimage I was gripped by some of the most intense pain I have ever had. I felt like something was swelling up on my right hand side and nothing I could do would alleviate this.
Let me get one thing clear I can deal with quite a lot of pain. I have been in pain while making bathroom visits on and off for at least 4 years now. The cramping I can deal with as I know it is generally short lived while my bowels evacuate. This was a whole new level of pain. I was screaming and crying with the intensity. It hurt when I moved, it hurt as I breathed even opening my bowels did nothing to alleviate it.
I was screaming and crying so loudly that I woke Tony, luckily it didn't wake the children. Tony did the only thing that seemed sensible dialled 999.
He relayed all my symptoms to them as I screamed and cried and honestly thought that this was it. I couldn't believe that the irinotecan side effects were kicking in this soon. The delayed diarrhoea is not supposed to kick in until about 24 hours until after the chemo ends and that was about what happened before so I was worried.
The ambulance crew of Ben and Jules were lovely. They brought some gas and air. Normally entenox is a fantastic pain killer. I have had it for all three births and when I was admitted to hospital via ambulance before and it was fab. I love the slightly light headed feel you get and how you gauge how well it is working. This time it was not touching the pain. I think at one point they said I was an 11/10 on the pain scale.
I got in the ambulance and Ben gave me a canula and some lovely liquid paracetamol, while I continued to suck on the gas and air. The paracetamol is 10 times stronger than normal paracetamol and started to make a dent in the pain. But then we upped the ante and hit it with the morphine and gas and air.
Things continud along the same lines as yesterday throughout my stay in A&E. I had some blood taken to check infection & HB levels. You can tell the NHS is under pressure, but the nurses absolutely deliver. However I could tell that the to the Dr's and registrars I was dealing with had very limited knowledge of cancer and chemo and I did have to explain things like I was explaining them to the kids again.
After a chest and abdominal X-ray the Dr came and told me there was some distension in my colon and I was being referred back to the lovely Mr Campbell-Smiths team to investigate.
Things swiftly started to go down hill from here. As I was seeing the registrar and running through all my history and symptoms again someone was knocking on the curtain saying I needed to be moved to SAU. The registrar did tell them they would have to wait as I was being examined and she told me she wanted to carry out a rectal exam, but due to their pushyness she would wait until I was on SAU. The reason for the urgency for me to be moved. TARGETS. I had been in A&E for 4 hours and that was it my time was up. If I stayed longer there would be a fine. I mean how stupid is that. I was being examined by a Dr and the powers that be have determined that I have to move now. So the rectal exam was postponed, and I was moved to SAU.
We got to SAU and the nurse was lovely, she would look into me being able to get something to eat. It was about 9.45 and some toast would have been lovely. She tried to get hold of the ADR, with limited success.
Tony and Hope had arrived at A&E about 6am and were still with me, but it's fairly boring so they headed home and the long night caught up with me. I took my morphine and oromorph as I wasn't written up for any pain relief yet, and Tony had to take it home with him because it is a controlled drug.
About 11.30 the Dr came and woke me up to do the rectal exam. I went to the loo (as usual) and came back to find she had disappeared and been replaced with a Macmillan nurse who made a lovely sounding board. The Macmillan nurse listened to me off load for the best part of an hour and left with some next steps and to find out when I could have something to eat.
One of the staff nurses then came and apologised, there had been a major trauma and she was trying to bleep the Dr to find out when I could eat. When I still hadn't heard anything by the time my next lot of observations was done at 2.30ish I again asked when I could have something to eat. This staff nurse didn't acknowledge the question, but I assumed she would go and find out. Still nothing.
At this point I was tired, I was hungry. I didn't dare go back to sleep in case the Dr came back and woke me up. Finally Tony and the kids arrived. I was overwhelmed with joy and started crying. He knew something was up and asked why I hadn't been pushing it.
I just hadn't. I can't explain why. I think it goes back to the feelings of invisibility I have had before. I am in my 30's, I am surrounded by people who generally require a higher level of care as they are in generally 70+. I feel like sometimes the nurses ignore the needs of younger people because we can cope.
I cracked, I pressed the buzzer. Even then no one came immediately. We had the curtains drawn for a bit of privacy. We heard a member of staff say, someone's buzzing, but no one came for about 6 or 7 minutes. Good job I wasn't bleeding uncontrollably of something.
When a nurse arrived I let rip. I told her I was tired, I was hungry. I hadn't eaten since 6.30pm the previous evening, I had been woken up for an exam I hadn't 't had, what was going on. As a patient undergoing chemo and cancer I would have though ensuring my blood sugar remained stable and I ate would have been quite high priority.
Finally at about 4.30 I got some food, there was a choice - tuna pasta salad or corned beef sandwich. I opted for the salad, it wasn't great, but it was better than nothing.
Finally the Dr came back and I asked her why she had not been back to exam me. Turns out she had forgotten all about it, but she had been busy. The team had looked at my X-ray and it appeared that the distension was actually in my stomach so I would need to have an NG tube inserted to try and see if it would take the distension down. I would also need a blood transfusion. I knew that. I was supposed to be going to St Luke's to haveq one tomorrow. My HB levels have dropped down to 7.something again.
So now, I have connected to the free wifi! listened to the new 3 Daft Monkeys album, Of Stones and Bones and had my NG tube inserted and am waiting to find out whether I am speeding the night on SAU or if I am going to be moved to a ward.
Never let it be said I don't live an exciting life.
And people - stop apologising, you have nothing to apologise for. You are reading this, you are thinking of me, you are giving me incredible support. I should be apologising to you for giving you way to much detail about the everyday nuances of my bowels and talking far to much about diarrhoea. But if it makes you think about your bowel habits and go to your GP, or makes you get that lump or mole checked out, it is worth every cringeworthy thing I have shared with you.
About this Blog
This blog started as an online diary and place for me to rant about annoyances in my family.
However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.
On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.
October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.
It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.
It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.
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Thursday, 7 November 2013
The pressure on the NHS
I want to reiterate something before I write this. My blog is not about individuals in the NHS, it is about the massive pressure the system is under to deliver top quality health care with an ever decreasing budget. Today I experienced some of these pressures first hand.
Firstly, there are things about the system that are excellent. After some delays I arrived at St Luke's more than an hour before my appointment time. This is mostly so I could find somewhere to park but also because I hate being late and cannot rely on the M23, M25 and A3 to provide a delay free route to Guildford at 8am. If this was anywhere else you would be seen at your allotted appointment time. At St Luke's the notes of patients who have arrived are being constantly collected so you are seen when you arrive, meaning if you are held up you are not chastised for missing your appointment but seen in turn, and if you arrive early you are called for your appointment while you are on the loo!!
After the normal discussions with the clinician about the management of side effects and the effectiveness of the oromorph for the pain, I was told that everything looked fine and I'd be able to have chemo later on.
A quick time check and it looked like it was nearly time for Hope to have a feed so settling down for the 4 hour wait, we found a secluded corner, I purchased a cup of tea and we got on with waiting it out.
After lunch in Costa, during which Hope helped herself to her first piece of orange, I was getting increasingly bored and Hope was getting increasingly tried, I popped her back in the pushchair and tired to go the long way round back to the chemo day unit. There is a little waiting area outside and I figured although there was just over an hour to go before my appointment I could wait there until my time.
Hope promptly fell asleep in the pushchair and I as I was walking through to the waiting area, one of the lovely chemo nurses spotted me and asked where I was going. Oh no, she said don't bother, your room is free, come and wait there. See above and beyond again.
This meant that I got a lovely hour of uninterrupted sleep before chemo was supposed to start.
Around 2:15 the nurse came and told me that my chemo hadn't come up on the 2pm box (my appointment was at 2pm) but it would be on the 3pm so she would make a start on changing my PICC dressing and flushing the line, so that when it & my notes arrived we were cooking on gas and ready to go.
3pm came and went, the flush had finished and the machine was beeping at me, but couldn't be disconnected as the chemo had not arrived. Another nurse came in and switched the bleeping off and went to find out what was happening. 25 minutes later another nurse came in and asked if I had had any blood taken when my PICC was flushed.
Yes I had, why?
Because I needed to come back in tomorrow for a blood transfusion of 2 units as my HB was low.
Not possible, I cannot possibly arrange that kind of childcare with less than 24 hours notice, but I could do it on Friday. Would that be in Crawley?
No, Guildford as there might be additional complications due to chemo that Crawley cannot handle.
So now, I know I have low HB again, but no chemo and another blood transfusion looming.
Finally, at 3.45, the 3pm box of chemo arrived and there were my beautiful freshly made pouches of irinotecan and folinic acid.
This is where the problems in the system lie. The reason I have to go to Guildford for chemo is everything is made fresh for you. So the 'chemists who make chemo' (there is probably a better, more technical term for them than that, but I don't know what it is and quite frankly can't be arsed to google it. You do it, if you want to know) have to make in 4 hours my chemo, chemo for everyone else on the ward that day, probably in excess of 70-100 people. Plus all the 2 day chemo patients chemo and all the inpatient chemo's.
The poor nurses, and you don't have a nurse each, have to clean and redress PICC lines, portacaths and Hickman lines, make sure lines are being flushed between drugs where appropriate and not when necessary, dole out anti sickness drugs ( I take 5 tablets before my Chemo), carry out the injections of other side effect management drugs ( I get an injection that is supposed to help with he loose bowels!!) and monitor all the patients to check they are all tolerating their chemotherapy.
There are 10-15 people in a room at any one time, 5 rooms, and 2/3 staff nurses per room and probably 2/3 HCA's.
Quite frankly they do an amazing job under an immense amount of pressure and uncertainty. The fault lies in there not being enough of them and enough of the people in the background because there isn't enough money in the system.
Think about that the next time you hear people talking about cuts in healthcare budgets.
Firstly, there are things about the system that are excellent. After some delays I arrived at St Luke's more than an hour before my appointment time. This is mostly so I could find somewhere to park but also because I hate being late and cannot rely on the M23, M25 and A3 to provide a delay free route to Guildford at 8am. If this was anywhere else you would be seen at your allotted appointment time. At St Luke's the notes of patients who have arrived are being constantly collected so you are seen when you arrive, meaning if you are held up you are not chastised for missing your appointment but seen in turn, and if you arrive early you are called for your appointment while you are on the loo!!
After the normal discussions with the clinician about the management of side effects and the effectiveness of the oromorph for the pain, I was told that everything looked fine and I'd be able to have chemo later on.
A quick time check and it looked like it was nearly time for Hope to have a feed so settling down for the 4 hour wait, we found a secluded corner, I purchased a cup of tea and we got on with waiting it out.
After lunch in Costa, during which Hope helped herself to her first piece of orange, I was getting increasingly bored and Hope was getting increasingly tried, I popped her back in the pushchair and tired to go the long way round back to the chemo day unit. There is a little waiting area outside and I figured although there was just over an hour to go before my appointment I could wait there until my time.
Hope promptly fell asleep in the pushchair and I as I was walking through to the waiting area, one of the lovely chemo nurses spotted me and asked where I was going. Oh no, she said don't bother, your room is free, come and wait there. See above and beyond again.
This meant that I got a lovely hour of uninterrupted sleep before chemo was supposed to start.
Around 2:15 the nurse came and told me that my chemo hadn't come up on the 2pm box (my appointment was at 2pm) but it would be on the 3pm so she would make a start on changing my PICC dressing and flushing the line, so that when it & my notes arrived we were cooking on gas and ready to go.
3pm came and went, the flush had finished and the machine was beeping at me, but couldn't be disconnected as the chemo had not arrived. Another nurse came in and switched the bleeping off and went to find out what was happening. 25 minutes later another nurse came in and asked if I had had any blood taken when my PICC was flushed.
Yes I had, why?
Because I needed to come back in tomorrow for a blood transfusion of 2 units as my HB was low.
Not possible, I cannot possibly arrange that kind of childcare with less than 24 hours notice, but I could do it on Friday. Would that be in Crawley?
No, Guildford as there might be additional complications due to chemo that Crawley cannot handle.
So now, I know I have low HB again, but no chemo and another blood transfusion looming.
Finally, at 3.45, the 3pm box of chemo arrived and there were my beautiful freshly made pouches of irinotecan and folinic acid.
This is where the problems in the system lie. The reason I have to go to Guildford for chemo is everything is made fresh for you. So the 'chemists who make chemo' (there is probably a better, more technical term for them than that, but I don't know what it is and quite frankly can't be arsed to google it. You do it, if you want to know) have to make in 4 hours my chemo, chemo for everyone else on the ward that day, probably in excess of 70-100 people. Plus all the 2 day chemo patients chemo and all the inpatient chemo's.
The poor nurses, and you don't have a nurse each, have to clean and redress PICC lines, portacaths and Hickman lines, make sure lines are being flushed between drugs where appropriate and not when necessary, dole out anti sickness drugs ( I take 5 tablets before my Chemo), carry out the injections of other side effect management drugs ( I get an injection that is supposed to help with he loose bowels!!) and monitor all the patients to check they are all tolerating their chemotherapy.
There are 10-15 people in a room at any one time, 5 rooms, and 2/3 staff nurses per room and probably 2/3 HCA's.
Quite frankly they do an amazing job under an immense amount of pressure and uncertainty. The fault lies in there not being enough of them and enough of the people in the background because there isn't enough money in the system.
Think about that the next time you hear people talking about cuts in healthcare budgets.
Tuesday, 5 November 2013
Bucket lists
We all have them, things we'd love to do before we die. The thing with cancer is it kind of creeps up on you unawares and doesn't give you a nice handy expiry date. So you start thinking of things you've never had a chance to do and things you'd love to do.
Then you realise, there are loads of things you'd like to do. So how do you narrow it down and make it manageable.
I've done this. There are 8 things on my personal bucket list. Things that I want to do for me, either on my own or with Tony or someone else. There is also my family list. Things I want the children to experience and I want to do it too, to see the looks on their faces when they experience the magic.
So here is my bucket list. When I was writing it I tried to think realistically of things I would be able to do and, crucially afford to do.
1. Go to Aberdeen. Strange to some, but I have been to Inverness, Fort William, Glasgow & Edinburgh and have heard that Aberdeen is beautiful & so I want to go.
2. Climb Scafell Pike. Since we moved south we have done very little fell walking, but I still love being outdoors with just a map, compass and a backpack. Having climbed Ben Nevis & Snowdon, there is only the highest peak in England to tick off and I will.
3. Go to Camden. Again, strange to some. You would imagine that I have been to Camden, shopped the markets and hung out in the cafés. Nothing could be further from the truth. The closest I gave got to Camden is getting the tube there with my rainbows for LASER's 25th rainbow birthday celebration at London Zoo. Alongside visiting Camden I want to go to a gig at the Roundhouse. This might therefore entail 2 trips ;)
4. Go back to Amsterdam. Tony surprised me with a trip to Amsterdam for my 20th birthday. I was definitely to young and naive to enjoy it. Now I would happily wander aimlessly around the city. That's what I want to do.
5. Go to Italy. I love reading ancient roman fiction - Conn Iggulden etc. I would love to go to Italy and see some of the sites I have read about and become immersed in. Pompeii, Rome, Vesuvius. I don't know where or what yet. But one day.
6. Take Jo to Paris. Paris was the first foreign city I ever visited at 14. Our school was twinned with a school in Paris. I adore the city. The architecture, the history, the dichotomy. Jo has been all over the place, but has never been to Paris. I have always promised that we would go together. Now we have to.
These last 2 are fairly obscure and might not mean much to some people so let me explain. Girlguiding UK has been a massive part of my life since I was 7 years old. I have met some amazing people and have had some incredible experiences with both guiding & through Tonys activity in the scout movement. My connection to guiding is so strong that as Imogen was born during the centenary of guiding, one of her middle names is Olave, who was Lord Robert Baden Powels wife, & the first chief guide.
There are 4 world centres of guiding. Pax Lodge, in London, Our Chalet, in Switzerland, Sangam in India and Our Cabana in Mexico. I have been to Pax Lodge & Our Chalet. So numbers 7 & 8
7. Visit Sangam
8. Visit Our Cabana.
There it is, written down in (purple) black & white. My bucket list. 8 things to accomplish for me. Over the coming months and years I shall update you on my progress!!
Then you realise, there are loads of things you'd like to do. So how do you narrow it down and make it manageable.
I've done this. There are 8 things on my personal bucket list. Things that I want to do for me, either on my own or with Tony or someone else. There is also my family list. Things I want the children to experience and I want to do it too, to see the looks on their faces when they experience the magic.
So here is my bucket list. When I was writing it I tried to think realistically of things I would be able to do and, crucially afford to do.
1. Go to Aberdeen. Strange to some, but I have been to Inverness, Fort William, Glasgow & Edinburgh and have heard that Aberdeen is beautiful & so I want to go.
2. Climb Scafell Pike. Since we moved south we have done very little fell walking, but I still love being outdoors with just a map, compass and a backpack. Having climbed Ben Nevis & Snowdon, there is only the highest peak in England to tick off and I will.
3. Go to Camden. Again, strange to some. You would imagine that I have been to Camden, shopped the markets and hung out in the cafés. Nothing could be further from the truth. The closest I gave got to Camden is getting the tube there with my rainbows for LASER's 25th rainbow birthday celebration at London Zoo. Alongside visiting Camden I want to go to a gig at the Roundhouse. This might therefore entail 2 trips ;)
4. Go back to Amsterdam. Tony surprised me with a trip to Amsterdam for my 20th birthday. I was definitely to young and naive to enjoy it. Now I would happily wander aimlessly around the city. That's what I want to do.
5. Go to Italy. I love reading ancient roman fiction - Conn Iggulden etc. I would love to go to Italy and see some of the sites I have read about and become immersed in. Pompeii, Rome, Vesuvius. I don't know where or what yet. But one day.
6. Take Jo to Paris. Paris was the first foreign city I ever visited at 14. Our school was twinned with a school in Paris. I adore the city. The architecture, the history, the dichotomy. Jo has been all over the place, but has never been to Paris. I have always promised that we would go together. Now we have to.
These last 2 are fairly obscure and might not mean much to some people so let me explain. Girlguiding UK has been a massive part of my life since I was 7 years old. I have met some amazing people and have had some incredible experiences with both guiding & through Tonys activity in the scout movement. My connection to guiding is so strong that as Imogen was born during the centenary of guiding, one of her middle names is Olave, who was Lord Robert Baden Powels wife, & the first chief guide.
There are 4 world centres of guiding. Pax Lodge, in London, Our Chalet, in Switzerland, Sangam in India and Our Cabana in Mexico. I have been to Pax Lodge & Our Chalet. So numbers 7 & 8
7. Visit Sangam
8. Visit Our Cabana.
There it is, written down in (purple) black & white. My bucket list. 8 things to accomplish for me. Over the coming months and years I shall update you on my progress!!
Monday, 4 November 2013
Children and Cancer
So, how do you explain something as complicated and all encompassing as cancer to your children?
I've already faced this dilemma once. Isaac was 3 years and 1 month old when I had my first operation and Imogen was almost 17 months. We explained it to them that Mummy had had a baddy in her tummy and the Dr had to cut mummy open and take it out. We explained chemo in the same way. We didn't want mummy's baddy to come back, so the Dr was going to give mummy some special medicine that would make her feel poorly, but it would make sure the baddies didn't come back. My PICC line became my wiggley, because it kind of looks like a wiggley worm where it goes into my arm.
But now that the cancer is back and inoperable it is a far more sensitive and difficult subject to explain.
When we sat down after their bath on October 15th 2013 to explain that mummys baddies had come back. Isaac immediately said
'Are they going to cut you open again and take them out?'
We were honest with him and told him 'No, mummy has more than one baddy and they can't take them out'
His face fell. You could see his 5 year old brain processing the fact that mummy was not going to be getting better so easily. So we explained that mummy would be able to have some more special medicine. But this time the special medicine would be working on the baddies to shrink them and make them shrivel up like the fruit that we sometimes forget to eat in the fruit bowl. This made sense to him and he now talks about how my baddies are going to shrivel up and explode (I don't correct him on the exploding bit, but I really don't want exploding tumours!!!)
Then there was the blood transfusion. Imogen loved the fact that I would be getting new blood so I didn't feel so dizzy and sleepy anymore. She went around telling everyone that mummy was getting new blood today!!
On Sunday though I got the cracker.
Imogen had obviously been thinking about this a lot and while we were at Crawley Garden Centre, having cake and soft play she asked
'Mummy why do you get baddies and other people don't?'
Now for a 3 year 8month old that is quite deep.
So I racked my brains for a child friendly explanation of cancerous genetic mutations and came up with this explanation.
Mummy's body is like the instruction books for Isaac's lego. There are lots of instructions for how to do things. Mummy's body is missing a few pages and this means that her body doesn't know how to do everything and so mummy gets baddies.
She processed this, and then said 'does the same thing happen to everyone when they get poorly'
'Sometimes, but sometimes people get poorly because they don't wash their hands properly after they have a wee or they get a cut and some nasty things get in. But sometimes peoples instructions are missing pages and they get really sick'
I am so proud of how my children are coping with all that is thrown at them and how well they respond to our explanations and equally that they are not scared to ask questions.
I would never hide the truth from my children and I hope you can see that you can be honest without scaring them.
I've already faced this dilemma once. Isaac was 3 years and 1 month old when I had my first operation and Imogen was almost 17 months. We explained it to them that Mummy had had a baddy in her tummy and the Dr had to cut mummy open and take it out. We explained chemo in the same way. We didn't want mummy's baddy to come back, so the Dr was going to give mummy some special medicine that would make her feel poorly, but it would make sure the baddies didn't come back. My PICC line became my wiggley, because it kind of looks like a wiggley worm where it goes into my arm.
But now that the cancer is back and inoperable it is a far more sensitive and difficult subject to explain.
When we sat down after their bath on October 15th 2013 to explain that mummys baddies had come back. Isaac immediately said
'Are they going to cut you open again and take them out?'
We were honest with him and told him 'No, mummy has more than one baddy and they can't take them out'
His face fell. You could see his 5 year old brain processing the fact that mummy was not going to be getting better so easily. So we explained that mummy would be able to have some more special medicine. But this time the special medicine would be working on the baddies to shrink them and make them shrivel up like the fruit that we sometimes forget to eat in the fruit bowl. This made sense to him and he now talks about how my baddies are going to shrivel up and explode (I don't correct him on the exploding bit, but I really don't want exploding tumours!!!)
Then there was the blood transfusion. Imogen loved the fact that I would be getting new blood so I didn't feel so dizzy and sleepy anymore. She went around telling everyone that mummy was getting new blood today!!
On Sunday though I got the cracker.
Imogen had obviously been thinking about this a lot and while we were at Crawley Garden Centre, having cake and soft play she asked
'Mummy why do you get baddies and other people don't?'
Now for a 3 year 8month old that is quite deep.
So I racked my brains for a child friendly explanation of cancerous genetic mutations and came up with this explanation.
Mummy's body is like the instruction books for Isaac's lego. There are lots of instructions for how to do things. Mummy's body is missing a few pages and this means that her body doesn't know how to do everything and so mummy gets baddies.
She processed this, and then said 'does the same thing happen to everyone when they get poorly'
'Sometimes, but sometimes people get poorly because they don't wash their hands properly after they have a wee or they get a cut and some nasty things get in. But sometimes peoples instructions are missing pages and they get really sick'
I am so proud of how my children are coping with all that is thrown at them and how well they respond to our explanations and equally that they are not scared to ask questions.
I would never hide the truth from my children and I hope you can see that you can be honest without scaring them.
Sunday, 3 November 2013
Saturday, 2 November 2013
The ultimate rollercoaster
No need to spend extortionate amounts of cash on days out to theme parks, no queuing, no bank loans needed for food.
Does this sound like something for you?
If so you need CANCER in your life.
I can honestly say that this week I have gone from the biggest highs to one of the lowest points of my cancer journey.
We'll start with the highs.
After a very lazy day on Monday with Hope and I just chilling and catching up on some sky plus, I accomplished a lot on Tuesday and Wednesday. This was not without its pitfalls. The trip to IKEA on Tuesday was more costly than I was anticipating, but toys need to be stored and I really want to create my rogues gallery of school photos.
Wednesdays playroom decluttering and decorating was immensely rewarding, although there are still a couple of bits of the mural that need completing. Once it is done I will post a photo on here.
Even Thursday and Friday left me with a sense that I had achieved something. Admittedly only rearranging a few bits and pieces in the kitchen and rediscovering my love of the bread maker. But these two accomplishments would not have been possible without the lovely people who organised and invited my children and me to Halloween activities meaning I didn't have to focus on ensuring the children were entertained.
Today however has been a rock bottom moment.
I'm going to talk about it here, where everyone can read it and where people can share it, because I want thoughtless people to realise that cancer is an invisible disease and just because I may look normal on the outside I am anything but on the inside and your comments are really hurtful.
The morning started like most Saturdays as we made the shopping list before heading to Sainsbury's. For a change I had had a reasonable nights sleep (about 5 hours all in). My tummy was feeling a little tender and unsettled but hey what's new!
As we were going round Sainsbury's it became clear that the tummy tenderness was more than normal and with some urgency I needed to go. Luckily we were very near the toilets and as I pushed the trolley towards Tony and headed away I could feel things already starting to move.
I very quickly walked through a checkout and headed towards the toilets overtaking two young people who were heading the same way.
I made it to the cubicle sat down, and let go. I couldn't help it. It was noisy, it was unpleasant, I was doubled over in pain.
Then I heard the door open to the toilets. The two young people I had passed earlier had come into the ladies. No problems normally. It's a toilet.
I am not going to repeat exactly what was said by these two girls, as the language was obscene. But it went along these lines.
'It f'ing stinks in here'
'Why can't people do that at home'
Then as I let rip again (I can't control it)
'OMG, they are still in here, how f'ing disgusting'
Then the door went and I imagine they left.
Now, not only am I doubled over in pain and farting like a trooper I am also sobbing with embarrassment, because I genuinely have no control over this.
This is not the first time I have encountered issues in the toilets. I have had someone knock on a cubicle door and tell me to f'ing hurry up because people are waiting. That time when I went in there was no queue & as I left I apologised that my inoperable stomach cancer was inconveniencing her, but she might like to spare a thought for my 3 under 5's who have to live with a mummy going through this and the thought that one day my consultant might tell me there is nothing else he can do.
So, why am I telling you this. I am embarrassed about this. I am mortified that I almost soiled myself in Sainsbury's due to my condition.
Because the next time someone is taking a long time in the toilet, or there is a queue or an unpleasant smell bare in mind that the bowel and stomach illnesses are invisible. The size 10 (mostly) well dressed mum dealing with 2 exuberant children and an adorable 6.5month old is also battling stomach cramps that leave her unable to stand up straight, have her wincing in pain when she carries her baby and has a stomach that churns so much it feels like a washing machine spin cycle.
Maybe I should use the disabled toilets, I certainly am considering it, but would I then face the backlash of not 'being disabled'.
Does this sound like something for you?
If so you need CANCER in your life.
I can honestly say that this week I have gone from the biggest highs to one of the lowest points of my cancer journey.
We'll start with the highs.
After a very lazy day on Monday with Hope and I just chilling and catching up on some sky plus, I accomplished a lot on Tuesday and Wednesday. This was not without its pitfalls. The trip to IKEA on Tuesday was more costly than I was anticipating, but toys need to be stored and I really want to create my rogues gallery of school photos.
Wednesdays playroom decluttering and decorating was immensely rewarding, although there are still a couple of bits of the mural that need completing. Once it is done I will post a photo on here.
Even Thursday and Friday left me with a sense that I had achieved something. Admittedly only rearranging a few bits and pieces in the kitchen and rediscovering my love of the bread maker. But these two accomplishments would not have been possible without the lovely people who organised and invited my children and me to Halloween activities meaning I didn't have to focus on ensuring the children were entertained.
Today however has been a rock bottom moment.
I'm going to talk about it here, where everyone can read it and where people can share it, because I want thoughtless people to realise that cancer is an invisible disease and just because I may look normal on the outside I am anything but on the inside and your comments are really hurtful.
The morning started like most Saturdays as we made the shopping list before heading to Sainsbury's. For a change I had had a reasonable nights sleep (about 5 hours all in). My tummy was feeling a little tender and unsettled but hey what's new!
As we were going round Sainsbury's it became clear that the tummy tenderness was more than normal and with some urgency I needed to go. Luckily we were very near the toilets and as I pushed the trolley towards Tony and headed away I could feel things already starting to move.
I very quickly walked through a checkout and headed towards the toilets overtaking two young people who were heading the same way.
I made it to the cubicle sat down, and let go. I couldn't help it. It was noisy, it was unpleasant, I was doubled over in pain.
Then I heard the door open to the toilets. The two young people I had passed earlier had come into the ladies. No problems normally. It's a toilet.
I am not going to repeat exactly what was said by these two girls, as the language was obscene. But it went along these lines.
'It f'ing stinks in here'
'Why can't people do that at home'
Then as I let rip again (I can't control it)
'OMG, they are still in here, how f'ing disgusting'
Then the door went and I imagine they left.
Now, not only am I doubled over in pain and farting like a trooper I am also sobbing with embarrassment, because I genuinely have no control over this.
This is not the first time I have encountered issues in the toilets. I have had someone knock on a cubicle door and tell me to f'ing hurry up because people are waiting. That time when I went in there was no queue & as I left I apologised that my inoperable stomach cancer was inconveniencing her, but she might like to spare a thought for my 3 under 5's who have to live with a mummy going through this and the thought that one day my consultant might tell me there is nothing else he can do.
So, why am I telling you this. I am embarrassed about this. I am mortified that I almost soiled myself in Sainsbury's due to my condition.
Because the next time someone is taking a long time in the toilet, or there is a queue or an unpleasant smell bare in mind that the bowel and stomach illnesses are invisible. The size 10 (mostly) well dressed mum dealing with 2 exuberant children and an adorable 6.5month old is also battling stomach cramps that leave her unable to stand up straight, have her wincing in pain when she carries her baby and has a stomach that churns so much it feels like a washing machine spin cycle.
Maybe I should use the disabled toilets, I certainly am considering it, but would I then face the backlash of not 'being disabled'.
Friday, 1 November 2013
NaBloPoMo
Given the randomness of the letters above you might be forgiven for thinking that one of my children had got hold of my iPad, guessed my password and decide to update you on my daily life. But no, November is National Blog Posting Month.
The aim is to blog everyday throughout November. I thought I might give it a whirl this year, I've got nothing to loose a lot to share and I wonder of it might give me a focus to get through the pain, and associated trauma knowing I can offload everyday.
I was never any good at keeping a diary as a child, and even as an adult it is only sine having children that I have been able to remember to add things to my calendar. Even since having children a paper diary is no good. I do love my online calendar though. I have Tony's calendar linked to mine as well as UK holidays so I can see at a glance what is going on.
My calendar syncs across all my various devices meaning I update one thing and it is everywhere else.
I like to think I could go cold turkey with electronic devices and earlier this week I was without my phone for a few days as I left it at my parents house in Somerset. I didn't miss my phone. I like being uncontactable. I can be quit antisocial sometimes. But trying to arrange my various appointments without having my handy phone in my back pocket was somewhat more challenging.
I ended up taking my iPad with me. This does not fit in my back pocket at all!! Not having my phone meant that in order to leave the house I needed Hope, changing bag, feeding stuff (bottle & hot water & formula) and now a bag big enough to have my iPad in as well. No wonder I have backache.
But all is well now, I have my phone back. You can call and text me although I don't promise to reply promptly or answer and I can go back to lumping 2 bags around rather than 3!!
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