What drives you to advocate?

Last night I was talking with my local Resolve infertility support group leader about some things.  I asked her how she was able to find the courage within to tell her story to the world in order to advocate for change in family building policies.  She has done many inspirational things as an advocate and has an amazing way with finding the right words that hit home.  Quite frankly, sharing your infertility journey in the public’s eye is terrifying.  She told me her courage comes from an underlying belief that we have to fight for change so that our children don’t have to go through what we have been through.  It is so so simple, but so so powerful.  And it probably seems obvious, but it really hit me hard. In fact, I love it.

If I don’t advocate for change in family building policies…who else will? Who else will make the difference so that my unborn child and her friends won’t have to struggle with the road blockages that face us in growing our families when infertility hits?  Financial stresses, friend and family stresses, work stresses all on top of the physical and mental stresses of being infertile.  Some of these stresses can be removed with a little help of legislation and education.

I’m going to raise my voice and share my story of success.  I may be judged, I may be scrutinised, others’ words might hurt me on the way…but that won’t compare to the potential opportunity for positive change in the future for my children if I don’t speak out.

My blog is one way…writing letters to politicians is another, but there are many other ways, and I’m going to start by having the courage to fight with this mantra supporting me.

Watch this space my friends, I’m feeling empowered 🙂

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Happiness Lies in the Present Moment

Nearly three years ago I went to my very first yoga class.  I actually went to an Adult Learning College and took a ten week class for beginners.   As I had just arrived in the USA I thought it would be a great way to meet new people and make new friends.  I was the youngest in the class by about 30 years, so I didn’t make many new friends, but I did meet some wonderful people.  I was excited to be trying a new fitness ‘thing’.  What I didn’t expect from this course was what I would learn about myself.

I arrived 2 minutes late for the very first class (whoops!!!) and everyone was lying down…was I in the right class?  So I lay down my mat and followed along.  The teacher was trying to explain to us the importance of breathing in yoga.  As we followed along with inhales and exhales, I began to laugh at myself, this was way too hippy for my liking.  I felt uncomfortable just closing my eyes and following my breath.  The teacher asked as to think about each breath as we inhaled and exhaled, not about what we were going to have for dinner, or that work project, or that friend you need to call back.  Just to focus our attention on the air flowing in the mouth, down the throat, expanding the lungs and back out again.  Suddenly, I was lost in the present moment.  My mind was quiet.  I don’t remember the last time my mind had truly stopped racing….even when I sleep I dream a lot.  Little did I know this was my first step towards a love of yoga and a new skill of meditation.

After several terms at the Adult Learning College I decided I was no longer a beginner and so joined a nearby yoga studio.  The classes were small, often there were just a couple of us so there was a lot of teacher attention, it was great!!! One of our teachers liked to share with us some of her favourite motivational readings, and from this I discovered even more about myself as I took the time to listen and contemplated the reading after the class in the car on the way home.  It was so peaceful.

The one thing that I have learned from yoga is that happiness is now.  It lies in the present moment.  It can be found quite easily when I allow my mind to rest and take the focus of my attention of my concerns and problems, and allow my mind o relax and remain in the moment.  I find breathing techniques help me do this quite well.

I learned that happiness cannot occur when we attach conditions to meet it.  As this is an infertility blog, a good example is….. “I will be happy once I finally have a child in my arms”.  It is too easy to fail to recognise the feeling of happiness for what it is and inadvertently let it drift away with our thoughts of the future, looking for happiness somewhere else.

I discovered that after my yoga classes I felt a wave of warmth and happiness within myself.

I need to find this feeling again…My yoga studio went bust last year and there isn’t another one that is as close, so I have found excuses.  I could do it myself, use online videos, but I enjoy being lead to that feeling and some times I find it difficult to motivate myself on to the mat.  But excuses no more!  Inner happiness in the present I shall find!!!

(Hopefully!!)

‘Tis the season…Pt 1.

‘Tis the season to be jolly.  True.  But my feelings can’t help but be a bit up-and-down like a see-saw.  So I decided to split my post into two.  Depending on how you are feeling this season, you may only want to read one or the other.  Maybe you feel a little bit like me, so read both!

Pt 1: ‘Tis the season to be jolly

Pt 2: ’tis the season to be not so jolly


Pt 1: ‘Tis the season to be jolly

I don’t know why I love the festive season.  Maybe it’s the food, maybe it’s the weather, maybe it’s the gift giving/receiving, maybe it’s the family coming together or maybe it’s just that time when the year is coming to an end where you can draw a line under the past 12 months and feel excited to start afresh with the New Year.  Or, in my case, perhaps it’s because it is also my Birthday ;-p

This is the first Christmas we will spend in Virginia.  The first Christmas in the US we spent it in Vermont skiing, this is where we decided to make a go of becoming parents.  The second Christmas we returned back to the UK and rented a cottage so both our families could stay with us for the holidays.  This third Christmas is less exciting in comparison, we are staying put.  But this is exciting to me because I can finally buy Chris a gift that is bigger than my suitcase!!!

This past week has been filled with festivities abound.  Not just in the physical sense, but the emotional sense too.  Here is a summary of the amazingness (or jolly, if you like) that I have experienced so far:

1. Home made mince pies.  If you read one of my previous posts you will know that these are not easy to come by in the US.  I made Nigella Lawson’s Domestic Goddess Cranberry studded mincemeat pies (recipe here).

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Home made Cranberry Studded Mincemeat star topped pies

My goodness, that pastry was so flaky and the mincemeat so juicy I couldn’t believe that I actually made them.  I shared them with some of my non-British colleagues at work who were intrigued as to what these ‘mincemeat pies’ were.  They didn’t spit it out in front of my face so that had to be a good thing 🙂

2. Decorating my house with a CHRISTMAS TREE!!!  The first time in the US!  OK so we still didn’t buy a real christmas tree, we wanted to see how our terrorquisitive cat Diesel would deal with one.  So we bought a small fake one.  He eats anything that has a dangly bit or rubber on it.  So far so good…everything remains in one piece and the tree still stands.

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It’s starting to look a lot like Christmas!

I also treated myself to one of those German wooden spinning pinwheels.  I have wanted one for aaaaages.  Every time I go to Germany I go to buy one and realise I don’t have enough room in my bags.  Plus they are quite expensive!

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I don’t know why I love it so much!!!

When the lady at TJMaxx rung it up, she exclaimed -“$40 for that!!!!”, I pointed out that in Gemany these were usually over $100.  Anyway, I love it.

3. My first Resolve support group meeting.  Resolve is the US national infertility association and they provide various forms of support for people with infertility. I picked up a flyer from my clinic about this local Resolve monthly meeting about 8 months ago when we were going through our third IUI procedure.  I left it in my ‘to do’ pile of paper work and each month thought about going and never got round to it.  Finally I got round to it!!!  I am so pleased I did.  I met some lovely ladies who just get it.  It was good to talk, and good to listen to their stories too.  I will definitely be going again.

4. The #TTCMugExchange2015.  I participated in the Mug Exchange that Chelsea from Starbucks, Peace and Pursuit of a Baby organised.  This week I received my mug and a few extra lovely goodies!

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I was spoilt with a box of goodies as well as a mug, cosy socks, an Irish Angel of Hope and a travel journal.

The mug I received was so beautiful.  Quite honestly, I think it is the best one I have seen 🙂

mug.jpg

My exchange partner is a bright and bubbly girl from Northern Ireland, she was originally told she would have to do IVF privately but just found out that the NHS will do IUI, so she is preparing for her first treatment!!!  She doesn’t blog, but is on Instagram.  As a result I’ve taken to trying out Instagram you can follow me @thegreatpuddingclubhunt if you have an account!

5. Just feeling the love around me.  We have received lots of invites for Christmas day so we are not alone; we have received lots of cards sending us well wishes and Christmas pressies that now sit under our tree.  And sometimes, it’s the little things that make a difference.  At a work gathering our big boss spoke about a whole bunch of work things and then he turned to talking about the holidays.  He pointed out that this is the time to look around at our neighbours and check they are doing OK.  The holiday season can be difficult for some people, and if we notice someone looking sad, down or simply stressed, take a minute to stop and ask “Are you doing OK?”  then listen.

love

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning

The cost of a suspected ectopic pregnancy

You can’t put a price or a value on having both your fallopian tubes intact.  In fact I imagine that anyone who has lost one or two of their fallopian tubes wouldn’t be able to put a price on how much they are willing to pay to have them whole and functioning again.  Without a doubt.  And so when the doctor told me that there is a risk that I had an ectopic pregnancy and a fallopian tube could rupture at any point, you simply don’t think about the $$$ money.;

After I found out that my pregnancy was non-viable, the whole process of determining whether or not I had an ectopic pregnancy was absolutely soul destroying and mentally exhausting.  I tried to research what the likelihood was of having an ectopic pregnancy was with IVF.  I tracked my hCG levels to try and determine what my odds were.  I even joined several online groups to talk to other women who had experienced what I was going through.  (I have probably mentioned this before, I dislike online forums because you get exposed to some real stupid, dumb, insensitive and simply irritating people.  And you just can’t get rid of them.)  All of this led me to some tiny hope that I was going to be one of those women who was going to beat the odds and carry a pregnancy despite the slow doubling hCG levels.

The doctors cared a lot about my wellbeing and were concerned of an ectopic.  I mostly followed their recommendations:  We both dropped everything to come in to the clinic for blood tests, consults and ultrasounds.  What they didn’t tell us was how much it is all going to cost.  Like I said, when there is a risk of losing a body part or even worse, your life, the money doesn’t matter.  And now I can finally say how much it all cost.

I am not complaining about the cost because we are lucky, we have amazing insurance and we can afford to pay the bills.  What I would like to know is what about those people whose insurance wouldn’t cover the costs?  It’s just another slap in the face if you have saved up or taken on debt to pay for IVF.  Of course, most insurance companies cover the cost for maternity healthcare, but the treatment of an ectopic or any other type of pregnancy loss doesn’t come for free.  Remember I told you about the woman who couldn’t afford to have an ‘abortion’ to end her life threatening pregnancy at her hospital because of a CRAPPY law? (You can read about it here).

When you save up and take on debt for IVF, no one tells you to save a little bit extra in case things go slightly wrong.  I have discovered, however, that most hospitals and healthcare providers will negotiate the costs if you can’t afford this type of care.  There are also some charities out there that can help.  I also believe that friends and family will be there too to help out.  We have helped out some friends in the past when they got caught out with unexpected medical bills.  It’s not only a difficult emotionally, it can quite quickly become difficult financially.

So how much did it cost?  Luckily for us, not much.  The total cost was $3,107 of which our insurance covered most of it, and so cost us $140.   I have updated my ‘Cost Lowdown’ page with the breakdown of where the biggest costs lie here. But this has made me think about putting aside more savings specifically for unexpected healthcare costs.

My appreciation for the UK National Health Service has simply sky rocketed.

Abortion and the grey space

We hear this word used in everyday life – abortion. We can all formulate an idea of what abortion is….someone choosing to end the life of their baby. But this isn’t a wholly accurate or fair description and is certainly not what medical professionals use the word ‘abortion’ for.

According to Wikipedia, the term ‘abortion’ can be defined as:

“The ending of a pregnancy by removing a fetus or embryo from the womb before it can survive on its own.”

The unintentional expulsion of an embryo or fetus before the 24th week of gestation is called a ‘spontaneous abortion’. This is the clinical term that is used by medical practitioners in their notes to describe what most lay people would understand to be ‘miscarriage’.

The intentional expulsion of an embryo or fetus is called an induced abortion. Reasons for intentionally inducing abortion are either therapeutic or elective:

  • Therapeutic abortion is performed to save the life of the pregnant woman; prevent harm to the woman’s physical or mental health; where indications are that the child will have a significantly increased chance of premature morbidity or mortality or otherwise disabled.
  • Elective abortion is voluntary when it is performed at the request of the woman for non-medical reasons.

And then there are the methods of abortion, including medical abortion and surgical abortion:  Medical abortion (sometimes also called chemical abortion) is induced by drugs or pharmaceuticals.  Where as surgical abortion includes procedures such as vacuum aspiration, Dilation and Curettage (D&C), Dilation & Evacuation (D&E) and hysterotomy.

The use of methotrexate to terminate my pregnancy of unknown location or ‘ectopic’ pregnancy is described as a medical abortion and can also be described as therapeutic abortion. Clinically, I did not miscarry.  Although I am sure I had started the process of miscarrying before I took the methotrexate, and would consider it to be a spontaneous abortion – or – miscarriage – or – early pregnancy loss. However you want to ice it, in my medical notes it will be described using the word abortion.

For those who are not aware that this is actually a clinical term it can come as quite a shock to see those words on their medical records.  For example, here is a link to a news article: “Mom to be shocked when miscarriage called ‘abortion’ in medical records” that shows how easy it is mis-perceive the term abortion.

But definitions of abortion vary across and within countries as well as among different institutions. Language used to refer to abortion often also reflects societal and political opinions and not only scientific knowledge. Popular use of the word abortion implies a deliberate pregnancy termination, whereas a miscarriage is used to refer to spontaneous fetal loss when the fetus is not viable (i.e. not yet unable to survive independently outside the womb).

Paul Freeling and Linda Gask* explain the problem well:

“As children many of us learnt the old rhyme “Sticks and stones may break my bones but words can never hurt me”. As we grew older we discovered that the adage was untrue. For most of us whose profession involved interacting with other people it became obvious that clumsy or inapposite use of language could cause pain. An attempt to avoid such pain has provoked…to suggest that distress in women who have miscarried would be reduced if changes were made in the language used by professional carers…the word “abortion” should be avoided because the lay public interprets it as applying to a termination of pregnancy.”

And then there is the grey space in between all of this. This is where in the US definitions and clinical descriptions are all important for insurance companies.

I recently read about a lady who fell right in between this grey space….

At a 13 week scan several doctors told her that her baby had a heartbeat, but the organs were not inside its body, the hands and feet are curled, one limb was missing, the neck was not right. Overall, the baby was unlikely to survive and should be removed as soon as possible before it could cause serious health issues. By definition, in Ohio, this situation was considered by the insurance company as an optional abortion because there was still a heartbeat, therefore, they would not cover the cost of the $10000 operation at the hospital. Planned Parenthood would be able to perform the surgery at a cost of $800.

Eventually, after the doctors re-worded the case, the insurance company agreed to cover the costs. But it came at a cost. You should read the whole article to fully appreciate what this poor woman went through: http://www.huffingtonpost.com/tamara-mann/heartbeat-involuntary-miscarriage-and-voluntary-abortion-in-ohio_b_2050888.html

This blog post is not about pro-life or pro-choice. It is merely a brief peek into the complexities of the use and definition of the term ‘abortion’.

For me personally, the insurance company did not initially cover the cost of my methotrexate treatment because it was being used as an abortion drug. Eventually we managed to claim the cost back directly via our European insurance provider.

I don’t have a solution to propose, I just know that abortion – whether it is spontaneous, elective, optional, surgical, medical – is a confusing grey mess of an area in the US.

* Freeling, P. & Gask, L., Changing terminology is no substitute for good consultations skills BMJ 1998; 317 doi: http://dx.doi.org/10.1136/bmj.317.7165.1028 (Published 17 October 1998)

NaBloPoMo November 2015

Our options widen…but not on the kids’ parties front

I had a great email today from our legal department.  They told us that the US government forsees no legal impediment based on our visa status for adopting in the US, either domestically or internationally. They are also aware of two other families from my organisation who have previously adopted successfully, however one family had a few complications over the legal issues.  However, it sounds like if you have money to burn, the legal issues will disappear.  I don’t mean in a corrupt way, but rather the more you pay the more you get in terms of service.

We asked our legal team to help us look into our visa status so we would know if it was actually possible for us as ‘legal aliens’ to adopt if we decide to stay in the US.  It took about three weeks for everything to be double checked, but it was worth the wait and now we know….we can adopt!

I also had a phone call from our IVF nurse co-ordinator today.  We have an appointment next week with her to go through the whole process in more depth than the doctor did – apparently it will take about 1.5hrs!!  She sounded very friendly and helpful (I guess you have to be do that job!)  She also informed me something the doctor forgot to tell us last week.

The Embryology lab is going through a refurbishment in late June/early July!

Fortunately it sounds like it won’t affect us as we would expect an egg retrieval in mid July.  I hope they don’t over run their re-furb or delay it because that would suck going through all that just to have our cycle cancelled because of some lazy painters!!! But I’m sure they wouldn’t let something like that happen.

I’m currently on Cycle Day 19 and I’m feeling great.  I have had the odd pain, but nothing like the sharp pains from the last two IUI cycles.  Fingers crossed they don’t come back that it was just a side effect of the progesterone and nothing else nasty causing them.  Our break from trying to conceive has been quite fun; next weekend we are planning a trip to our local beer festival and Bush Gardens to try out their new roller coaster ‘Tempesto’!

Physically the break is doing me good.  Mentally, I’ve still had a few odd moments.  This last weekend we didn’t go to our friend’s daughter’s 3rd birthday party at the petting zoo.  Now, I love animals. Love love love them, and who doesn’t love to pet animals!  But I freaked out at the last minute about going someplace where everyone else will have a kid with them and we would be the odd ones out.  I mean, why would anyone go to a petting zoo without a kid in tow?  If it had been a party at their house or somewhere more neutral in that sense I wouldn’t have had a problem. It was just the idea of feeling like we didn’t belong, with the potential for random strangers asking ‘oh which one is your kid’? Or, like the time a random granny noticed us at a Christmas tree lighting ceremony, told us ‘It’s OK that you don’t have a kid’. Yeah, I’ve been there before….and right now it is not for me.  I felt bad that I couldn’t pull myself together to go, I hope they can understand.  I’m sure they do.  I just wish I didn’t feel like this.

So to end this post on a positive note…here is a picture of a cheeky goat that we know.

Who wouldn't want to pet this cheeky goat? Oh that would be me, big chicken pants.

Who wouldn’t want to pet this cheeky goat? Oh that would be me, the big chicken pants.

Can somebody get me a translator in here please?

We moved to the US from the UK over 2 years ago, and even now I still have awkward moments with Americans where the conversation just stops mid flow as we realise we don’t understand each other.  I’m not saying it is a huge language barrier, like it might be if we had moved to Japan, but we have had to learn a new language.  I think it is easier for us Brits to understand Americans because we watch a lot of American TV shows and films, and Americans have a harder time trying to understand us.

I thought about this issue when I was talking to my nurse about prescriptions – it can be like another language, for example a prescription is known as an Rx.  When I have asked some Americans what Rx stands for, they were unable to answer, so upon googling Rx, it turns out it originates from a Latin word – Recipe, to take.  In Europe doctors use the abbreviation Rp.  (Everyday is a school day!).  I also asked about repeat prescriptions, which is actually called a refill prescription here in the US.  The nurse was very understanding and helpful.  Finally, when I picked up my prescription the pharmacist asked for my Date of Birth, I replied “28th December (insert some ‘I am ancient’ year here)”.  Her brain did not compute this immediately because Americans say the month, day, year.  Not her fault…In the UK we say day, month, year.  Still after two years I have not got this into my head – even today as Chris was writing a check he wrote it the wrong way round!!!

So here are some words which mean very different things in each language, some of them lead to funny misinterpretations:

American = Britishamerica

check = bill

bill = note ($$)

chips = crisps

fries = chips

cookie = biscuit

biscuit = savory scone

underwear = pants

pants = trousers

broil = grill

grill = bbq

eraser = rubber

rubber = condom

faucet = tap

silverware = cutlery

first floor = ground floor

second floor = first floor

gas = petrol

trunk = boot

jelly = jam

jello = jelly

pudding = not pudding!!! Angel delight?

br