I've had a couple of interesting experiences over the last few days that I thought I would share with you.
I like to think I'm a pretty good mummy. I do shout, but mostly when I'm in pain and I live in pain so I don't shout as much as I could. When I do shout I always give the children a hug afterwards and say sorry to them. I explain that mummy's baddies are hurting her and she is cross with them and shouldn't shout at Isaac and Imogen.
Sometimes they just push my buttons. It is hard to discipline in that case. You need to make a distinction between why you are cross with them then and not at other times.
Anyway I digress. Let me take you to yesterday tea time.
It had been a long day, we got back from school, got straight in the car to go to the hospital to have my PICC line flushed and redressed. I'd already decided to treat the children to McDonalds for tea. We didn't leave the hospital until 16:30, so that made sense.
I don't apologise for giving it to them. They enjoy it. There are worse things they could eat, but actually the experience I had this time relates to Hope.
I'd given her a few carrot sticks and broken one of Imogen's chicken nuggets in half for her. She was happily chewing away when a lady launched herself at me and began a tirade about how irresponsible I was feeding my 'tiny baby' solid food, about how she was obviously choking and did I not know that. I was shell shocked. I have only ever had positive feedback about the way I weaned all three of my children. I think I managed to mutter something along the lines of 'as she's my third I think I know what I'm doing, thank you' but it didn't stop her sitting staring at me for the rest of the meal.
Why do people do this? Why do complete strangers feel that it is ok to judge your parenting? As a parent you can't win. You're made to feel uncomfortable breastfeeding or formula feeding. If you choose to co sleep you face harsh critics, but move your baby into their own room and you risk more judging. Wean with puree's and your told there is no need as you shouldn't wean until your baby can decide what they want to eat and when, but do BLW and you face the woman I did yesterday!!
I have a thick skin, but recent events have made me wary about doing things with Hope in public. I often sit feeding her wishing I was breastfeeding rather than bottle feeding. I wonder how many people are judging me for bottle feeding, because unfortunately I don't have a sign that says I'd rather be breastfeeding, but cancer means I can't.
(Hmmm maybe there's a business opportunity there, dragons den here I come)
Experience number two came this morning, when cbeebies didn't work. My schedule in the morning relies on certain programmes at certain times. This morning my children had to entertain themselves. Thus resulted in Imogen eating breakfast while wearing her pajama's, Cinderella dress and devil mask and Isaac having Hope in fits of giggles while wearing a Dracula mask.
Then, as we left for school they decided to be robots and marched like robots the whole way to school.
I might now leave cbeebies off and watch the news instead!!!
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.
For more inane ramblings, follow me on twitter
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Showing posts with label breastfeeding. Show all posts
Showing posts with label breastfeeding. Show all posts
Thursday, 28 November 2013
Friday, 15 November 2013
Coming to terms with my changing body
I have posted a lot about the factors that led to me nagging my GP for every test under the sun to find out what was wrong with me.
One of the big factors was weight loss.
I have always been comfortable in my body. I have never dieted or religioùsly weighed myself ( apart from the 4 months before I got married when I used slim fast)
When I conceived Isaac in 2007 I was a size 18/20. I probably weighed about 100kg. However I was happy, I had no desire to loose weight, I did a lot of yoga, walked a lot and ate healthily. At 6' (1.8m) tall I carried it well. Ok, I was overweight but not scarily so.
After Isaac was born I lost some weight through breastfeeding. Yes, really, I did loose weight and then when Imogen was born in 2010 I lost more through breastfeeding and running around after a toddler. I was then between a 16/18, probably about 85-90kg. Still doing the yoga, not so much walking but eating a lot more healthily.
Fast forward to 2011 - more weight loss, people were starting to comment on it. I was doing nothing differently except for running around after 2 toddlers and using the car a lot less as petrol prices crept up and the Volvo drank fuel like it was water!!
I now know that the 2011 weight loss should have been a wake up call to get things looked at. I had a tumour growing inside me which was causing the weight loss. I was down to 80kg and a size 16.
Once I was diagnosed and started treatment things seemed to stabilise. I was a comfortable size 16 and celebrated getting the all clear with some new clothes. I felt good in my body, it had beaten cancer and survived 8 cycles of chemotherapy.
Then 4 short months later, even more amazingly I found out I was expecting baby number 3. At my booking in appointment with the midwife I weighed in at 81.2kg. However I did not have an easy pregnancy and clothes that fitted at the start of the pregnancy seemed to get bigger rather than smaller as I struggled to eat 3 meals a day due to a combination of sickness, pain and exhaustion.
Once Hope was born I was back in my pre pregnancy jeans within days. I took Isaac to a birthday party on April 14th wearing size 18 jeans, that were too big.
Within a month of her birth I was buying jeans in a size 14. I was thrilled. According to my scales I was 75kg, and this meant I was no longer overweight. I was healthy.
But the weight loss didn't stop there. By the time Isaac finished his first year at school the size 14's were too big and I was down to 70kg. I couldn't afford to buy more new clothes. When you are as tall as me, you can't just nip to primary and pick up a few cheap pairs of jeans unless you want them to end mid calf. Charity shops are out too, there aren't generally tall ranges in them.
Over the summer I tried to eat better. But I couldn't keep the weight on. By the time Isaac went back to school I was 60kg. I had lots of positive comments from people about how lucky I was to be loosing so much weight, how well I looked and what was my secret. Luckily these were people who didn't know me well. The people that know me knew how worried I was.. The tests weren't showing anything. Clear colonoscopies, clear CT scans, clear blood tests. But something was wrong.
I hated my body now. Clothes hung off me. I looked gaunt and, to me, ill. The Ruth looking back at me was not someone I knew.. I was half the women I used to be. I joked a lot about feeling like a Trainspotting extra, a drug addict. I could fit my belt around me twice. The only benefit was I could occasionally go bra less (not that I did, I was still breastfeeding, but I did not need the support offered by my 38GG feeding bras, I actually got re measured in Debenhams as a 32E and had perky boobs again).
The cancer reappearing has been a blessing in disguise. I knew what was wrong. I was not imagining it. I really was proper poorly. This raised new issues for me. I started to realise that I wasn't going to put all the weight back on.
In my new Box of Love was an envelope. I picked it up when we went across to Cardiff as I thought I might need cheering up. When I opened it on Friday night I was stunned. Several people had clubbed together a got me a voucher for Next. I couldn't wait to spend it. Imogen, Hope and I went shopping in Cardiff. We got something for each of the girls and then gleaned directions to Next. I'd decided I would get at least one pair of jeans, which I did, in a size 12. They were a little too big but I hoped I would put some of the weight back on. I also got a scarf and some long sleeved tops for layering as I knew that the chemo, cancer and weight loss were going to mean I was cold a lot. To the people that bought me that voucher, you know who you are. The thoughtfulness was amazing. You made me come to terms with my changing body.
I've been picking up a few more bits and pieces now. Mostly PJ's as they are comfy and multi purpose. I tend to put them on as soon as I know I don't have to go out again in the afternoon.
I still have a way to go before I am comfortable in my body though. Being slim, makes me feel taller and seems to make people more aware of my height. Today I went into Next and thought I would try some skinny jeans. I was not ready for that. A size 10 gaped at the back and was baggy around the thighs, as well as making my legs look like matchsticks.
I'll be sticking to cosy PJ's and boyfriend fit jeans for now.
One of the big factors was weight loss.
I have always been comfortable in my body. I have never dieted or religioùsly weighed myself ( apart from the 4 months before I got married when I used slim fast)
When I conceived Isaac in 2007 I was a size 18/20. I probably weighed about 100kg. However I was happy, I had no desire to loose weight, I did a lot of yoga, walked a lot and ate healthily. At 6' (1.8m) tall I carried it well. Ok, I was overweight but not scarily so.
After Isaac was born I lost some weight through breastfeeding. Yes, really, I did loose weight and then when Imogen was born in 2010 I lost more through breastfeeding and running around after a toddler. I was then between a 16/18, probably about 85-90kg. Still doing the yoga, not so much walking but eating a lot more healthily.
Fast forward to 2011 - more weight loss, people were starting to comment on it. I was doing nothing differently except for running around after 2 toddlers and using the car a lot less as petrol prices crept up and the Volvo drank fuel like it was water!!
I now know that the 2011 weight loss should have been a wake up call to get things looked at. I had a tumour growing inside me which was causing the weight loss. I was down to 80kg and a size 16.
Once I was diagnosed and started treatment things seemed to stabilise. I was a comfortable size 16 and celebrated getting the all clear with some new clothes. I felt good in my body, it had beaten cancer and survived 8 cycles of chemotherapy.
Then 4 short months later, even more amazingly I found out I was expecting baby number 3. At my booking in appointment with the midwife I weighed in at 81.2kg. However I did not have an easy pregnancy and clothes that fitted at the start of the pregnancy seemed to get bigger rather than smaller as I struggled to eat 3 meals a day due to a combination of sickness, pain and exhaustion.
Once Hope was born I was back in my pre pregnancy jeans within days. I took Isaac to a birthday party on April 14th wearing size 18 jeans, that were too big.
Within a month of her birth I was buying jeans in a size 14. I was thrilled. According to my scales I was 75kg, and this meant I was no longer overweight. I was healthy.
But the weight loss didn't stop there. By the time Isaac finished his first year at school the size 14's were too big and I was down to 70kg. I couldn't afford to buy more new clothes. When you are as tall as me, you can't just nip to primary and pick up a few cheap pairs of jeans unless you want them to end mid calf. Charity shops are out too, there aren't generally tall ranges in them.
Over the summer I tried to eat better. But I couldn't keep the weight on. By the time Isaac went back to school I was 60kg. I had lots of positive comments from people about how lucky I was to be loosing so much weight, how well I looked and what was my secret. Luckily these were people who didn't know me well. The people that know me knew how worried I was.. The tests weren't showing anything. Clear colonoscopies, clear CT scans, clear blood tests. But something was wrong.
I hated my body now. Clothes hung off me. I looked gaunt and, to me, ill. The Ruth looking back at me was not someone I knew.. I was half the women I used to be. I joked a lot about feeling like a Trainspotting extra, a drug addict. I could fit my belt around me twice. The only benefit was I could occasionally go bra less (not that I did, I was still breastfeeding, but I did not need the support offered by my 38GG feeding bras, I actually got re measured in Debenhams as a 32E and had perky boobs again).
The cancer reappearing has been a blessing in disguise. I knew what was wrong. I was not imagining it. I really was proper poorly. This raised new issues for me. I started to realise that I wasn't going to put all the weight back on.
In my new Box of Love was an envelope. I picked it up when we went across to Cardiff as I thought I might need cheering up. When I opened it on Friday night I was stunned. Several people had clubbed together a got me a voucher for Next. I couldn't wait to spend it. Imogen, Hope and I went shopping in Cardiff. We got something for each of the girls and then gleaned directions to Next. I'd decided I would get at least one pair of jeans, which I did, in a size 12. They were a little too big but I hoped I would put some of the weight back on. I also got a scarf and some long sleeved tops for layering as I knew that the chemo, cancer and weight loss were going to mean I was cold a lot. To the people that bought me that voucher, you know who you are. The thoughtfulness was amazing. You made me come to terms with my changing body.
I've been picking up a few more bits and pieces now. Mostly PJ's as they are comfy and multi purpose. I tend to put them on as soon as I know I don't have to go out again in the afternoon.
I still have a way to go before I am comfortable in my body though. Being slim, makes me feel taller and seems to make people more aware of my height. Today I went into Next and thought I would try some skinny jeans. I was not ready for that. A size 10 gaped at the back and was baggy around the thighs, as well as making my legs look like matchsticks.
I'll be sticking to cosy PJ's and boyfriend fit jeans for now.
Wednesday, 30 October 2013
A 6 month old newborn baby
2 weeks ago, an angel arrived in Crawley and proceeded do something no mother, grandmother, parent or carer should have to do. Force a 6 month old baby to do something which goes against all their natural instincts and is completely alien to everything they have known so far.
This is not a bottle bashing, breastfeeding praising post. This is about the pain and struggles that my family, including my mum have been through in the last 2 weeks due to the reappearance of my cancer.
We had bought the formula a few days earlier and tried half heartedly to get Hope to take a little bit from a bottle. Tony had tried using the avent bottles that I had from when I went back to work after having Isaac. She took 3 oz at one point, but that was it. We would offer her the bottle at bed/bath time but if she didn't take it, no biggie, I still had my boobs and she was still more than happy to latch on and feed as normal.
All this changed on Tuesday morning. As soon as cancer, then chemo, then the aggressiveness of the tumours were mentioned I knew that this was it. My fabulous breastfeeding journey was coming to an end.
When I say fabulous, I mean it. I never intended to be an extended breast feeder. I just wanted to do what came naturally. For Isaac that meant he fed until I was 5 months pregnant with Imogen and he was 16 months old. For Imogen that meant feeding her until I was admitted to hospital in 2011, she was 17 months old. I fully intended doing the same with Hope.
I love breastfeeding, I love it's intimacy, accessibility, and the ability to be able to offer comfort to my baby. It is no faff, no fuss and quick, convenient and easy.
I have never judged people that chose to feed their baby infant formula. I recognise that every one has a choice and what works for me, might not to for you.
When I knew I had to stop, I knew I needed 2 things. My mum and some Tommee tippee bottles from my sister in law. Mum arrived on Wednesday and we sat down a worked out a plan.
The plan had 2 goals, by the following Thursday Hope had to be comfortable and able to take formula from a bottle. Also I had to drop feeds gradually enough to prevent myself getting mastitis or engorged and suffering from any of the painful side effects of stopping breastfeeding as I found out the drugs you can take to stop milk production are incompatible with chemo!!
I won't lie, I spent a lot of time hiding upstairs while Hope screamed at my mum. I sobbed my heart out, repeatedly, I felt guilt, I felt regret, I felt suicidal at one point. But after a little bit of trial and error Mum found that Hope liked a size 2 teat and very warm milk.
The next step was Hope taking a bottle from me. We accomplished that over the weekend. Then on Monday, when I had my nurse led clinic appointment I took bottles and managd to feed her in the waiting area at the hospital.
My final step was leaving Hope. I did this on Wednesday when I had my PICC line put in.
I was heartbroken, I was not Hope's sole carer anymore. Now anyone could look after her. Some people are more willing to give her bottles than others.
So on Thursday morning, I gave Hope her last ever breastfeeding. I sobbed, I couldn't stop apologising to her for not giving her the same opportunity that Isaac and Imogen had had.
Now I am in a whole new world. It is like having a 6 month old newborn. I am having to learn a whole new set of feeding cues and associations. I need to plan, I can't just leave the house. I need bottles, formula powder, boiling water. Hope spends a lot more time screaming now because I cannot anticipate when I might need to feed her. Her sleeping is all over the place and I don't know how much she needs.
Over the weekend she was having 4 7oz bottles a day. Today she has had 3 4oz bottles, 2 6oz bottles and a 2oz bottle. I don't know how many times she will wake up tonight.
Then there are the nappies, ok so we are weaning as well, but no more lovely smelling breastfed baby poo. Formula nappies are unpleasant and far more frequent than her one every 2/3 days.
Finally the cost. This is really annoying me. I don't want to feed my baby formula, but added to all the associated increasd costs with cancer I now have to add an extra £10 a week to my food shop, because of cancer.
So cancer, screw you, I will beat you again because of what you have robbed me off.
This is not a bottle bashing, breastfeeding praising post. This is about the pain and struggles that my family, including my mum have been through in the last 2 weeks due to the reappearance of my cancer.
We had bought the formula a few days earlier and tried half heartedly to get Hope to take a little bit from a bottle. Tony had tried using the avent bottles that I had from when I went back to work after having Isaac. She took 3 oz at one point, but that was it. We would offer her the bottle at bed/bath time but if she didn't take it, no biggie, I still had my boobs and she was still more than happy to latch on and feed as normal.
All this changed on Tuesday morning. As soon as cancer, then chemo, then the aggressiveness of the tumours were mentioned I knew that this was it. My fabulous breastfeeding journey was coming to an end.
When I say fabulous, I mean it. I never intended to be an extended breast feeder. I just wanted to do what came naturally. For Isaac that meant he fed until I was 5 months pregnant with Imogen and he was 16 months old. For Imogen that meant feeding her until I was admitted to hospital in 2011, she was 17 months old. I fully intended doing the same with Hope.
I love breastfeeding, I love it's intimacy, accessibility, and the ability to be able to offer comfort to my baby. It is no faff, no fuss and quick, convenient and easy.
I have never judged people that chose to feed their baby infant formula. I recognise that every one has a choice and what works for me, might not to for you.
When I knew I had to stop, I knew I needed 2 things. My mum and some Tommee tippee bottles from my sister in law. Mum arrived on Wednesday and we sat down a worked out a plan.
The plan had 2 goals, by the following Thursday Hope had to be comfortable and able to take formula from a bottle. Also I had to drop feeds gradually enough to prevent myself getting mastitis or engorged and suffering from any of the painful side effects of stopping breastfeeding as I found out the drugs you can take to stop milk production are incompatible with chemo!!
I won't lie, I spent a lot of time hiding upstairs while Hope screamed at my mum. I sobbed my heart out, repeatedly, I felt guilt, I felt regret, I felt suicidal at one point. But after a little bit of trial and error Mum found that Hope liked a size 2 teat and very warm milk.
The next step was Hope taking a bottle from me. We accomplished that over the weekend. Then on Monday, when I had my nurse led clinic appointment I took bottles and managd to feed her in the waiting area at the hospital.
My final step was leaving Hope. I did this on Wednesday when I had my PICC line put in.
I was heartbroken, I was not Hope's sole carer anymore. Now anyone could look after her. Some people are more willing to give her bottles than others.
So on Thursday morning, I gave Hope her last ever breastfeeding. I sobbed, I couldn't stop apologising to her for not giving her the same opportunity that Isaac and Imogen had had.
Now I am in a whole new world. It is like having a 6 month old newborn. I am having to learn a whole new set of feeding cues and associations. I need to plan, I can't just leave the house. I need bottles, formula powder, boiling water. Hope spends a lot more time screaming now because I cannot anticipate when I might need to feed her. Her sleeping is all over the place and I don't know how much she needs.
Over the weekend she was having 4 7oz bottles a day. Today she has had 3 4oz bottles, 2 6oz bottles and a 2oz bottle. I don't know how many times she will wake up tonight.
Then there are the nappies, ok so we are weaning as well, but no more lovely smelling breastfed baby poo. Formula nappies are unpleasant and far more frequent than her one every 2/3 days.
Finally the cost. This is really annoying me. I don't want to feed my baby formula, but added to all the associated increasd costs with cancer I now have to add an extra £10 a week to my food shop, because of cancer.
So cancer, screw you, I will beat you again because of what you have robbed me off.
Friday, 18 October 2013
Cancer insomnia kicks in and pain prevents sleep
So, 2 days after diagnosis, cancer insomnia sets in. Actually that's a lie really it's not so much cancer related insomnia as pain prevents sleep.
And the beauty of this blog and my iPad is that I can blog when I feel like it and be honest.
Remember that, everything you read on here is the raw truth, there is no sugar coating, I tell it like it is.
At the moment it's a roller coaster.
On Wednesday , on my way back from toddlers with Hope, on my way to pick up Imogen I got a phone call. I was driving I ignored it. When I checked my voicemail it was St Luke's calling to ask me to arrange treatment. I thought I would have a week or so to get used to the idea that I was going to go through chemo hell again.
Nope, when in called them back it turns out they had had a cancellation and could I start next week.
Now starting chemo is not quite as easy as rocking up at the hospital and getting some drugs.
My treatment actually started yesterday with my lovely blood transfusion. I needed to increase my blood count so I can actually tolerate the chemo. So I spent yesterday on the 6 th floor of Crawley hospital in a lovely private room, chilling with Hope and watching the planes take off at Gatwick.
This weekend the focus will be on reducing breastfeeding and getting Hope to take most of her feeds from bottles. I am hoping to do one last feed on Thursday morning, which will break my heart, but I know it is for the best.
On Monday I have to go to St Luke's to e nurse led clinic where they give you all the information that you need about your particular chemotherapy regime and what the side effects may be. This is the chance to ask any questions and I have a lot this time. The basic Macmillan info I have been given about my new regime looks intense and there are some inconsistencies with what I have read and what I have been told so I need to iron these out.
I get Tuesday off, although Hotpoint are coming to fix my dishwasher which appeared on watchdog a couple of weeks as one that might potentially catch fire!!
On Wednesday it it back to Guildford, this time without Hope to get my PICC line fitted. You know, that annoying line that goes into my arm, under my skin and means no more baths, swimming or generally getting my arm wet for a long a time. Although I have decided that this time I am going to invest in something called a limbo Cover so I don't have to keep wrapping my arm up in cling film for a shower.
Then Thursday, Tony, Hope and I will be starting my new chemo adventure, although I won't be able to feed Hope while I am having chemo I need my family with me for my first cycle.
I am putting my body through all this again to kill these tumours so I can watch my children grow up and become parents. Watching my mum playing with the children today has scared me.
Because of the nature of these new tumours I am facing the very real (at 2.30am) possibility that I might not get to see my children get married or have children. I may never be a grandparent. I am trying to stay so strong for them, but this thought keeps creeping into my head and lodging there.
I know I can beat this, I have done it once, what I don't know is if I have the strength to beat it over and over again. If it comes back how many times can I keep fighting.
If anyone knows, answers on a comment please. No postcards, the stamps are too expensive!!
And the beauty of this blog and my iPad is that I can blog when I feel like it and be honest.
Remember that, everything you read on here is the raw truth, there is no sugar coating, I tell it like it is.
At the moment it's a roller coaster.
On Wednesday , on my way back from toddlers with Hope, on my way to pick up Imogen I got a phone call. I was driving I ignored it. When I checked my voicemail it was St Luke's calling to ask me to arrange treatment. I thought I would have a week or so to get used to the idea that I was going to go through chemo hell again.
Nope, when in called them back it turns out they had had a cancellation and could I start next week.
Now starting chemo is not quite as easy as rocking up at the hospital and getting some drugs.
My treatment actually started yesterday with my lovely blood transfusion. I needed to increase my blood count so I can actually tolerate the chemo. So I spent yesterday on the 6 th floor of Crawley hospital in a lovely private room, chilling with Hope and watching the planes take off at Gatwick.
This weekend the focus will be on reducing breastfeeding and getting Hope to take most of her feeds from bottles. I am hoping to do one last feed on Thursday morning, which will break my heart, but I know it is for the best.
On Monday I have to go to St Luke's to e nurse led clinic where they give you all the information that you need about your particular chemotherapy regime and what the side effects may be. This is the chance to ask any questions and I have a lot this time. The basic Macmillan info I have been given about my new regime looks intense and there are some inconsistencies with what I have read and what I have been told so I need to iron these out.
I get Tuesday off, although Hotpoint are coming to fix my dishwasher which appeared on watchdog a couple of weeks as one that might potentially catch fire!!
On Wednesday it it back to Guildford, this time without Hope to get my PICC line fitted. You know, that annoying line that goes into my arm, under my skin and means no more baths, swimming or generally getting my arm wet for a long a time. Although I have decided that this time I am going to invest in something called a limbo Cover so I don't have to keep wrapping my arm up in cling film for a shower.
Then Thursday, Tony, Hope and I will be starting my new chemo adventure, although I won't be able to feed Hope while I am having chemo I need my family with me for my first cycle.
I am putting my body through all this again to kill these tumours so I can watch my children grow up and become parents. Watching my mum playing with the children today has scared me.
Because of the nature of these new tumours I am facing the very real (at 2.30am) possibility that I might not get to see my children get married or have children. I may never be a grandparent. I am trying to stay so strong for them, but this thought keeps creeping into my head and lodging there.
I know I can beat this, I have done it once, what I don't know is if I have the strength to beat it over and over again. If it comes back how many times can I keep fighting.
If anyone knows, answers on a comment please. No postcards, the stamps are too expensive!!
Tuesday, 15 October 2013
Guess who's back, back again
I can't help but have the lyrics to Eminems 2002 hit going round and round my head at the moment.
I have had a feeling since Friday, let me explain why.
I saw my GP for the results of my blood test. My HB (blood count) was down to between 7 & 8. It should be 12. Deja vu there, this happened in 2011 and I needed two blood transfusions to get it back up.
He then expressed his surprise that I hadn't heard from the MDT team yet. That's the colorectal nurses, surgeons, oncologists etc who review everyone's files and decide on their treatment paths.
Finally, he is the GP who does the baby clinic, asked whether I had managed to introduce a bottle to Hope and he strongly recommended that we do it ASAP. I thought that this was because he wanted to be able to prescribe me stronger painkillers. I now know differently.
When I got home I phoned the upper GI nurses who I had spoken to before and left them a message asking why I still hadn't heard anything.
Later on I got a call from Jackie, which was lovely, but she's a colorectal nurse and she talked about arranging me an appointment with Dr Cummings, who is my oncologist. It's OK she said he knows your history, he'll be able to help.
Alarm bells start going off gently. These start blaring on Saturday when a letter arrives dated 10th October telling me of my appointment with Dr Cummings and having the 'bring a friend or relative line'
So fast forward through the weekend, cancer rolling around my head, staying away from Google, but hoping it could be nice and straightforward like last time. Operation, tumour out, chemo to kill the rest, boom cancer free.
Nope, nothing so simple this time.
I have peritoneal disease and liver metastases, these are inoperable. So the only solution is chemo. But before I can have chemo I need to stop breastfeeding.
So, we are persevering with the bottle as Hope screams at Tony while he tries to feed her and I hide upstairs.
I am coming to terms with the fact that I have inoperable, Incurable cancer. The chemotherapy can shrink and manage the tumours but my understanding is that they won't go and they could spread.
I always knew that cancer could come back. I never thought that it would be so soon.
On Thursday I need to go and have a blood transfusion, and sometime in the next couple of weeks I'll be getting another PICC line and starting a new killer regime of drugs to beat and reduce these tumours again.
I have had a feeling since Friday, let me explain why.
I saw my GP for the results of my blood test. My HB (blood count) was down to between 7 & 8. It should be 12. Deja vu there, this happened in 2011 and I needed two blood transfusions to get it back up.
He then expressed his surprise that I hadn't heard from the MDT team yet. That's the colorectal nurses, surgeons, oncologists etc who review everyone's files and decide on their treatment paths.
Finally, he is the GP who does the baby clinic, asked whether I had managed to introduce a bottle to Hope and he strongly recommended that we do it ASAP. I thought that this was because he wanted to be able to prescribe me stronger painkillers. I now know differently.
When I got home I phoned the upper GI nurses who I had spoken to before and left them a message asking why I still hadn't heard anything.
Later on I got a call from Jackie, which was lovely, but she's a colorectal nurse and she talked about arranging me an appointment with Dr Cummings, who is my oncologist. It's OK she said he knows your history, he'll be able to help.
Alarm bells start going off gently. These start blaring on Saturday when a letter arrives dated 10th October telling me of my appointment with Dr Cummings and having the 'bring a friend or relative line'
So fast forward through the weekend, cancer rolling around my head, staying away from Google, but hoping it could be nice and straightforward like last time. Operation, tumour out, chemo to kill the rest, boom cancer free.
Nope, nothing so simple this time.
I have peritoneal disease and liver metastases, these are inoperable. So the only solution is chemo. But before I can have chemo I need to stop breastfeeding.
So, we are persevering with the bottle as Hope screams at Tony while he tries to feed her and I hide upstairs.
I am coming to terms with the fact that I have inoperable, Incurable cancer. The chemotherapy can shrink and manage the tumours but my understanding is that they won't go and they could spread.
I always knew that cancer could come back. I never thought that it would be so soon.
On Thursday I need to go and have a blood transfusion, and sometime in the next couple of weeks I'll be getting another PICC line and starting a new killer regime of drugs to beat and reduce these tumours again.
Wednesday, 18 September 2013
Colonoscopy round 2
At 7.15 yesterday morning Tony dropped me off at the hospital for another go with the colonoscopy.
I was eventually reunited with Tony and Hope, who had refused the bottle he offered her, and then the consultant came round.
I'm still processing what he told me.
My colon is clear, no problems, nothing to worry about. But he did take some biopsies for microcollitis.
We had a bit of a chat about my symptoms and he is referring me for an endoscopy, to check my stomach, but he agrees something is definitely wrong with the way my body is processing my food.
In the meantime I am the proud owner of a photo of the inside of my colon!!
Having been up most of the night with the preparation going on, the moment I walked through the doors I HAD to go. If I had known how much of a problem this was going to cause later on, I would have rather waited. Alas hindsight is a marvellous thing.
I got to the unit and gave my name, was asked where my baby was and then took a seat. A this point Tony was dropping the 2 bigger children off with childcarers who would be able to look after them and drop them off at school etc.
After about 45 minutes waiting I was called to meet my anaesthetist who was lovely and went through a few questions about me and my history. We talked about my crappy veins and she reassured me that this would not be a problem.
I went back into the waiting room and then was called to be admitted by a HCA. Again the bowel related urgency struck and I needed to go. She gave me a sample pot, and I really tried, but having not drunk anything since about midnight, all I could produce was bowel motions.
I went into her room and went through all the questions again. I mean the NHS could be so much more efficient if one person did this rather than the 3 that I eventually saw, who went through the same thing. She told me that I really needed to try and produce a sample.
About 9am Tony & Hope arrived, as the anaesthetist had told me I was first on the list I decided to feed Hope fairly soon. Just after I had finished feeding her I was called to meet the consultant who would do the procedure. I signed all he consent forms and was told to change into a hospital gown and the lovely stockings.
Then a nurse came in and told me I couldn't go until I had passed urine. At this point I had tried three times and was not able to pass urine. I couldn't understand why it was so important and told her I had passed urine when I entered the hospital as due to the colonoscopy prep I had had to go, and was not able to produce anymore.
As I was explaining this, the nurse walked out of the room and I could overhear her talking to a colleague about how I was shouting and abusing her. I DID NOT SHOUT AND I CERTAINLY WASN'T ABUSING HER. I had calmly pointed out that this was stressful for me due to having just fed my baby because I knew I was due to go up, and I could not always produce urine on demand.
Eventually, probably about an hour later, someone else, I don't know who she was, came in and told me I had to pass urine. I explained I couldn't. All they wanted to know was whether I could be pregnant. I can definitely confirm there is no way I am pregnant. All someone had to do was ask.
Eventually I was taken up to theatre and met my anaesthetist again.
She couldn't find a vein, so gave me some lovely gas, which I took three puffs and I was out.
I woke up in recovery, with a cannula in the crook of my elbow and a lovely nurse checking all my vital signs.
I was eventually reunited with Tony and Hope, who had refused the bottle he offered her, and then the consultant came round.
I'm still processing what he told me.
My colon is clear, no problems, nothing to worry about. But he did take some biopsies for microcollitis.
We had a bit of a chat about my symptoms and he is referring me for an endoscopy, to check my stomach, but he agrees something is definitely wrong with the way my body is processing my food.
In the meantime I am the proud owner of a photo of the inside of my colon!!
Tuesday, 10 September 2013
Thinking outside the box
Thank goodness for managers and people who can think outside the box. I'll elaborate more in a second.
On Saturday I had my colonoscopy pre assessment appointment. This was basically a tick box exercise which I found very unsatisfactory. The lack of understanding about breastfeeding amongst healthcare professionals never ceases to amaze me.
The nurse who completed my assessment was very dismissive of my need to breastfeed Hope before & after the procedure and TOLD me that anaesthetics and breastfeeding don't mix, you have to express or give formula. When I told her that wasn't really an option as Hope resists the bottle I was told that I'd probably have to wait until I'd finished breastfeeding as you CAN'T feed for 48 hours after a general anaesthetic.
I questioned this as I know people have babies under general anaesthetic and feed pretty much straight away and was told that doesn't happen!!
The appointment was left that she would speak with an anaesthetist and call me on Monday.
Monday came and went & no phone call. Today I was gearing myself up to call, when my phone rang.
It was the endoscopy department. After confirming who I was she launched straight into her rant.
'We need to know whether you are having your colonoscopy on 17th as we have been told you refuse to stop breastfeeding'
Wow, talk about confrontational. I stopped her at this point.
I am not refusing to stop breastfeeding, I was waiting for a phone call to confirm whether a suitable anaesthetic was available for me as a breastfeeding mother.
She told me...I am not a clinician, but no anaesthetic is suitable for breastfeeding you have to express for 48 hours or give formula.
Again I said that I thought this was not correct and would like to see what an anaesthetist said.
She reluctantly agreed and I prepared to vent my spleen on here about how breastfeeding unfriendly my local hospital was, when the phone rang.
It was the manager of the pre assessment unit, she was not interested in ticking boxes, but interested in working with me to find a solution.
I explained what I saw happening, so that we could make this work. It's simple really.
Tony & Hope come with me, I feed before I go under, Tony & Hope wander around the hospital, I come round and pump, dump, then feed.
Fine, she said no problem.
In reality, I have to be at the hospital for 7:30 so, we will all go to the hospital and drop me off, Tony will bring all three children back and drop them at respective childcarers, then come back, see where I am and follow the plan.
All I can say is thank heavens for managers who have common sense and can think outside the very narrow boxes the NHS seems to use.
On Saturday I had my colonoscopy pre assessment appointment. This was basically a tick box exercise which I found very unsatisfactory. The lack of understanding about breastfeeding amongst healthcare professionals never ceases to amaze me.
The nurse who completed my assessment was very dismissive of my need to breastfeed Hope before & after the procedure and TOLD me that anaesthetics and breastfeeding don't mix, you have to express or give formula. When I told her that wasn't really an option as Hope resists the bottle I was told that I'd probably have to wait until I'd finished breastfeeding as you CAN'T feed for 48 hours after a general anaesthetic.
I questioned this as I know people have babies under general anaesthetic and feed pretty much straight away and was told that doesn't happen!!
The appointment was left that she would speak with an anaesthetist and call me on Monday.
Monday came and went & no phone call. Today I was gearing myself up to call, when my phone rang.
It was the endoscopy department. After confirming who I was she launched straight into her rant.
'We need to know whether you are having your colonoscopy on 17th as we have been told you refuse to stop breastfeeding'
Wow, talk about confrontational. I stopped her at this point.
I am not refusing to stop breastfeeding, I was waiting for a phone call to confirm whether a suitable anaesthetic was available for me as a breastfeeding mother.
She told me...I am not a clinician, but no anaesthetic is suitable for breastfeeding you have to express for 48 hours or give formula.
Again I said that I thought this was not correct and would like to see what an anaesthetist said.
She reluctantly agreed and I prepared to vent my spleen on here about how breastfeeding unfriendly my local hospital was, when the phone rang.
It was the manager of the pre assessment unit, she was not interested in ticking boxes, but interested in working with me to find a solution.
I explained what I saw happening, so that we could make this work. It's simple really.
Tony & Hope come with me, I feed before I go under, Tony & Hope wander around the hospital, I come round and pump, dump, then feed.
Fine, she said no problem.
In reality, I have to be at the hospital for 7:30 so, we will all go to the hospital and drop me off, Tony will bring all three children back and drop them at respective childcarers, then come back, see where I am and follow the plan.
All I can say is thank heavens for managers who have common sense and can think outside the very narrow boxes the NHS seems to use.
Sunday, 18 August 2013
Colonoscopy prep, this might be graphic!!
So, at 2pm today operation preparation began.
The 10 senna tablets went down during the first episode of 24 series 8 that I had decided to watch to pass the time and keep me close to the toilet.
Coupled with the copious amounts of water I have been forcing myself to drink this kept me on the loo for a while, although things were not really moving as well as I wanted.
Come 4.30 I went and put the kettle on for the preparation of the citramag (ok I lie, Tony actually did it, but I went and made the stuff). After letting it cool for the requisit 30 minutes I attempted to drink it, which I managed. And then added more water into the mix, as well as a strained vegetable cuppa soup.
This had the effect of making me feel very bloated and almost looking pregnant again!!
Come 7pm it was time for more citramag, which my loving husband prepared and delivered to me. I took one sip and that was it, I knew that this was not staying down and boy was it not staying down.
Other than returning to bed to briefly feed Hope I have been vomiting & defecating with alarming regularity and ease for the last two hours.
I have missed Dragons Den ( thank goodness for BBC iPlayer) and am now trying to catch up on Dexter, but having missed the last two episodes and with no time for a sky plus catch up, I have no idea what is going on.
Things appear to be calming down now, and hopefully I can settle down and get some sleep in.
Send me sleep vibes please ;)
The 10 senna tablets went down during the first episode of 24 series 8 that I had decided to watch to pass the time and keep me close to the toilet.
Coupled with the copious amounts of water I have been forcing myself to drink this kept me on the loo for a while, although things were not really moving as well as I wanted.
Come 4.30 I went and put the kettle on for the preparation of the citramag (ok I lie, Tony actually did it, but I went and made the stuff). After letting it cool for the requisit 30 minutes I attempted to drink it, which I managed. And then added more water into the mix, as well as a strained vegetable cuppa soup.
This had the effect of making me feel very bloated and almost looking pregnant again!!
Come 7pm it was time for more citramag, which my loving husband prepared and delivered to me. I took one sip and that was it, I knew that this was not staying down and boy was it not staying down.
Other than returning to bed to briefly feed Hope I have been vomiting & defecating with alarming regularity and ease for the last two hours.
I have missed Dragons Den ( thank goodness for BBC iPlayer) and am now trying to catch up on Dexter, but having missed the last two episodes and with no time for a sky plus catch up, I have no idea what is going on.
Things appear to be calming down now, and hopefully I can settle down and get some sleep in.
Send me sleep vibes please ;)
Friday, 16 August 2013
My body has given up
Since December 2007 I have either been pregnant, breastfeeding or battling cancer and as a result I think my body may have decided it is time to throw in the towel.
No, no, I am not dying but there are a lot of things wrong with my body and I am annoyed that in this quick fix era there is no quick fix for the human body.
Before Hope was conceived I was a comfortable dress size 16. I was happy with this and had started running and doing yoga to try and tone up some of those Mummy Wobbly bits, but was not planning on loosing any more weight. Fast forward to today. I am wearing a pair of size 14 jeans that I bough when Hope was 6 weeks old and they are too big. I have lost at least 15 kgs since she was conceived and I am worried.
I know that this statement puts me at odds with the vast majority of my sex. Most women would kill to loose weight without having to watch what they eat and excersise, but not me. I have never worried about my weight. Other than 3 months before my wedding where I used slimfast to try and loose a few pounds I have never dieted. Yet, I cannot keep weight on at the moment. I look in the mirror and see an ill looking stranger looking back at me. According to the NHS BMI calculator here I am healthy, but I was also healthy when I was 15kgs heavier and I was also a lot happier.
Add to the unexplained dramatic weight loss all the other health complaints I am suffering and you would be forgiven for thinking that I am on a one woman campaign to use every bit of the NHS!!
I am still having physio for the back pain which came on when I was pregnant.
Then there is the bowel stuff
If you do not like poo related discussions you might want to stop reading now :)
Since having Hope my bowels have become somewhat unpredictable again. I almost feel like I have regressed to how they were acting post surgery. It is explosive, unpleasant smelling, urgent and frequent. Combined with incredible bloating & stomach cramps like I have never experienced before my GP has been able to refer me for another colonoscopy (on Monday so I am starting my preparation tonight) and I have seriously considered cutting things out of my diet.
No, scratch that I have cut something out of my diet. On Wednesday I made the decision that the agony I have been suffering after a sandwich is something not worth the pain so I have decided to cut out gluten/wheat. Actually I do feel better for it. But it is unscientific as I have no diagnosis to confirm whether or not I need to do this. But it does help.
What doesn't help is this TV advert which has me crazing a large slice of hot buttered home made toast and marmite.
But hopefully come September we will have some answers or some tablets and I will be able to move further away from the toilet!!!
No, no, I am not dying but there are a lot of things wrong with my body and I am annoyed that in this quick fix era there is no quick fix for the human body.
Before Hope was conceived I was a comfortable dress size 16. I was happy with this and had started running and doing yoga to try and tone up some of those Mummy Wobbly bits, but was not planning on loosing any more weight. Fast forward to today. I am wearing a pair of size 14 jeans that I bough when Hope was 6 weeks old and they are too big. I have lost at least 15 kgs since she was conceived and I am worried.
I know that this statement puts me at odds with the vast majority of my sex. Most women would kill to loose weight without having to watch what they eat and excersise, but not me. I have never worried about my weight. Other than 3 months before my wedding where I used slimfast to try and loose a few pounds I have never dieted. Yet, I cannot keep weight on at the moment. I look in the mirror and see an ill looking stranger looking back at me. According to the NHS BMI calculator here I am healthy, but I was also healthy when I was 15kgs heavier and I was also a lot happier.
Add to the unexplained dramatic weight loss all the other health complaints I am suffering and you would be forgiven for thinking that I am on a one woman campaign to use every bit of the NHS!!
I am still having physio for the back pain which came on when I was pregnant.
Then there is the bowel stuff
If you do not like poo related discussions you might want to stop reading now :)
Since having Hope my bowels have become somewhat unpredictable again. I almost feel like I have regressed to how they were acting post surgery. It is explosive, unpleasant smelling, urgent and frequent. Combined with incredible bloating & stomach cramps like I have never experienced before my GP has been able to refer me for another colonoscopy (on Monday so I am starting my preparation tonight) and I have seriously considered cutting things out of my diet.
No, scratch that I have cut something out of my diet. On Wednesday I made the decision that the agony I have been suffering after a sandwich is something not worth the pain so I have decided to cut out gluten/wheat. Actually I do feel better for it. But it is unscientific as I have no diagnosis to confirm whether or not I need to do this. But it does help.
What doesn't help is this TV advert which has me crazing a large slice of hot buttered home made toast and marmite.
But hopefully come September we will have some answers or some tablets and I will be able to move further away from the toilet!!!
Sunday, 4 March 2012
March madness
Wow, March already.
In knitting novice news - the 29th signalled my last trip to Guildford. I saw my consultant and despite having felt shocking for the last few days I was still healthy enough to have chemotherapy. I finall talked to him about what happens next. He said I would receive an appointment for a CT scan and then would have a follow up. When I told him I already had a date for a follow up he was slightly confused but said that as long as my CT scan is before the follow up then it will be fine.
In knitting news - after almost 2 years I finally finished my bobble cushions from this book and have started a new project...... 12 knitted boobs from this blog for a breastfeeding counsellor friend of mine. So far, 2 down, 10 to go. In family news - littlest novice survived to her 2nd birthday and we celebrated in style with a trip to Drusllas zoo including a ride on Thomas the Tank Engine and some feeding of Lorrikeets.
In knitting news - after almost 2 years I finally finished my bobble cushions from this book and have started a new project...... 12 knitted boobs from this blog for a breastfeeding counsellor friend of mine. So far, 2 down, 10 to go. In family news - littlest novice survived to her 2nd birthday and we celebrated in style with a trip to Drusllas zoo including a ride on Thomas the Tank Engine and some feeding of Lorrikeets.
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