Everything below I wrote on 2 January 2018, but never got round to actually putting up here.
That's the last milestone since my miscarriage that I had looked forward to... 'before'. The last event that last year I thought about "this time next year" and envisaged a very different time. I think this celebration is even more subdued than what I imagined, and definitely more subdued than last year, when my husband was at work and I was at home, with one alcoholic and one non-alcoholic mulled wine on the stove.
Two or three weeks ago I hit rock bottom. [Shortly after that IVF/PGD/Geneticist appointment.] I didn't want to be here, but thankfully I didn't want to not be here that much that I would have acted on it either. I pictured a Christmas in tears, a New Years in tears, and a feeling of hopelessness. While I am not "looking forward" to 2018 per se, because of the challenges and decisions that I face, I no longer have that feeling. It's not quite a hopeful feeling, but I'd like to think I might make it there in the next few months. I suppose I'm currently hoping for hope.
I don't tend to make resolutions, I haven't for years. I don't think the new year is a good time to try any big changes in my life. I like to think that a change can be made at any time through the year.
Every month in 2017 felt like the previous month. I really did lose a month. The build up to Christmas did not feel like Christmas and crept up on me in a massive way. I suppose in part because we were doing a kitchen refurb (great idea - keep the mind off things! Ha!) and couldn't put the tree up till Christmas Eve. We did carry on with a family tradition with my best friend's family round, and Christmas appeared out of nowhere!
Then Christmas Day, the husband was working, so I got up, had a lovely bath, then sat on my bum watching films. I went back to work on 27 December, and it somehow felt like 2018 already. I got my month back over the course of two bank holidays. I really needed that time.
I called my GP surgery on 13 December to make an appointment because I needed some help, I told my boss [at the time] that I had made an appointment with my GP to discuss my mental health. He wasn't surprised, and asked if there was anything they could do. I think it might have been a switch, I admitted I needed help to a few people, and that was enough, the tears on the drive home from work stopped flowing. By the time I went to see my GP on 22 December, we agreed that asI had a rare 4 days off in a row it might be enough, and I would get a phone call on the day I went back to work, to see if I wanted or needed signed off. I mostly think that I put off even going to the GP because I didn't want work to know any details, given I started in August, and I don't know if I would have taken the time had I been in my old job, although I probably would have broken a lot sooner if I had stayed. I'm glad I told my GP, but I am very glad I didn't need to take things further than that.
It's nice to read that now, over a year later, to see how far 2018 took me. The changes I have seen in my life. I was right when I thought a few more months would give me renewed hope, however the way I was treated at work after that smashed that hope down a little, but it was easier to pick it back up again, because I was able to evaluate what was important, and that was not.
Sunday 20 January 2019
6 December 2017
Finally.
Our appointment with the IVF consultant. And the PGD nurse. And the Geneticist. Three professionals, and us.
Difficult appointment, sitting in the waiting room, with the other couples there, knowing that I have experienced something they may not have: pregnancy. Knowing that we all want that.
We had so many questions for that appointment. questions that were not answered, or were answered in roundabout ways.
I wanted to know what would happen with the viable embryos that were not implanted, I was bluntly informed that I should prepare myself for not getting any viable embryos. I reiterated my question, acknowledging that they had already explained that they only had a 26% chance of success, and I was told that they wouldn't talk about that unless it became a possibility. I figured out that obviously the possibility of that was slim.
We were told (in a roundabout way) that once we got to the top of the waiting list, they would start working on a genetic probe, and once that was done, they would be in touch. They wouldn't be able to let us know how long it would take to look at all the possibilities of chromosomal arrangements until they were done. Essentially, in one fell swoop they told us that we would get to the top of the list, but they had a lot to do before they would tell us that that is where we were, and we would stay there until they were good and ready. The second thing we had to figure out from that was that there weren't just the simplified four options that the geneticist explained to us in that first appointment. It took google, and the balanced translocation support group on Facebook to help me figure out that one. Turns out there are more like 16 "options" and only 2 of them viable (in our case).
[In other cases of balanced translocation, involving different chromosomes, or different breaks on the same chromosomes, there may be more viable options, but only two would be genetically typical. Some other unbalanced translocations can survive through birth and beyond, and may or may not have learning difficulties, physical impairment, or the ability to live to adulthood.]
There is a great infographic on slide 22 found here which shows all the possible permutations - a lot more than the 4 we originally understood it to be. In other parts of the slideshow, it shows that at the time of the study (2011), with the 50 people with reciprocal translocations that they worked with, only 16% of embryos came back genetically normal. (It also notes Robertsonian translocation, which is somewhat different to balanced translocation (which is called reciprocal). I don't know as much about Robertsonian translocation, because it doesn't affect me, but I understand that the miscarriage rates are similar, but they don't have as many possibilities for embryos. This infographic does not indicate the chance of each possibility occurring - I think that varies for each person with a translocation, but I am not 100% on that. I get the impression that it's not as high as a 50% chance of genetically typical, but that the main four possibilities have a much higher chance than the next two, which have a higher chance than the next ones... I think I would need to actually be a geneticist and studying it to have an idea of the true chances, as none that I've met have ever felt obliged to share that type of information with me.
The information, or inability to really give us chances, given it really is such a new field of science, (the combination of IVF with PGD that is) meant that we left that appointment none the wiser, and thinking that we would be getting called for IVF in December 2018. It was that information and a lot of google, and a lot of that Facebook group, that helped us come to the decision that we really couldn't be bothered with IVF if we really don't have to, because it's messing with hormones, to prevent a miscarriage at 3 and a half months. Traumatic as that was, it's grim enough having to go through IVF, and we had to wait a year. We decided to give it a chance on our own, because that would be what we would face after our first IVF child anyway, and go in with the risk of that later miscarriage, knowing that most other possibilities wouldn't slow us down too much in moving towards our goal.
I didn't write about that appointment closer to it actually happening because I couldn't get my head round the fact that I had so little information from it; I had hoped to get all the answers, and instead I was given more uncertainty.
I started writing about this because I thought I was facing IVF as the only way to have children, because at that stage I was so terrified of having another miscarriage. I took such a break from writing because I was so annoyed with the IVF giving me hope, and that hope being taken out of my hands, bashed along the ground, thrown through a mangle, held underwater, then given back to me, gasping for breath, battered, bruised, and diminished. I took that hope, and I threw it towards my career instead, got a wee boost there, I threw myself into aerial a bit more, and trained harder than ever, and I've never been fitter. I took that hope and breathed new life into it, nursed it back to a bigger and better place, and we tried again, and tried again, and tried again...
We got a letter from the NHS in between Christmas and New Year 2018, inviting us to an appointment on 4 February 2019 for IVF. Given I'm on my PGDE, I knew long before the letter came through that I would be going to that appointment to "press pause" so to speak on IVF until after May. As I have written before, the stress of each thing has helped distract from the stress of the other; it's nice to get that letter and have another thing to focus on, so I am not placing too much hope in it. I'm hoping that my renewed hope does not need to be faced with IVF by then, but only time will tell!
Our appointment with the IVF consultant. And the PGD nurse. And the Geneticist. Three professionals, and us.
Difficult appointment, sitting in the waiting room, with the other couples there, knowing that I have experienced something they may not have: pregnancy. Knowing that we all want that.
We had so many questions for that appointment. questions that were not answered, or were answered in roundabout ways.
I wanted to know what would happen with the viable embryos that were not implanted, I was bluntly informed that I should prepare myself for not getting any viable embryos. I reiterated my question, acknowledging that they had already explained that they only had a 26% chance of success, and I was told that they wouldn't talk about that unless it became a possibility. I figured out that obviously the possibility of that was slim.
We were told (in a roundabout way) that once we got to the top of the waiting list, they would start working on a genetic probe, and once that was done, they would be in touch. They wouldn't be able to let us know how long it would take to look at all the possibilities of chromosomal arrangements until they were done. Essentially, in one fell swoop they told us that we would get to the top of the list, but they had a lot to do before they would tell us that that is where we were, and we would stay there until they were good and ready. The second thing we had to figure out from that was that there weren't just the simplified four options that the geneticist explained to us in that first appointment. It took google, and the balanced translocation support group on Facebook to help me figure out that one. Turns out there are more like 16 "options" and only 2 of them viable (in our case).
[In other cases of balanced translocation, involving different chromosomes, or different breaks on the same chromosomes, there may be more viable options, but only two would be genetically typical. Some other unbalanced translocations can survive through birth and beyond, and may or may not have learning difficulties, physical impairment, or the ability to live to adulthood.]
There is a great infographic on slide 22 found here which shows all the possible permutations - a lot more than the 4 we originally understood it to be. In other parts of the slideshow, it shows that at the time of the study (2011), with the 50 people with reciprocal translocations that they worked with, only 16% of embryos came back genetically normal. (It also notes Robertsonian translocation, which is somewhat different to balanced translocation (which is called reciprocal). I don't know as much about Robertsonian translocation, because it doesn't affect me, but I understand that the miscarriage rates are similar, but they don't have as many possibilities for embryos. This infographic does not indicate the chance of each possibility occurring - I think that varies for each person with a translocation, but I am not 100% on that. I get the impression that it's not as high as a 50% chance of genetically typical, but that the main four possibilities have a much higher chance than the next two, which have a higher chance than the next ones... I think I would need to actually be a geneticist and studying it to have an idea of the true chances, as none that I've met have ever felt obliged to share that type of information with me.
The information, or inability to really give us chances, given it really is such a new field of science, (the combination of IVF with PGD that is) meant that we left that appointment none the wiser, and thinking that we would be getting called for IVF in December 2018. It was that information and a lot of google, and a lot of that Facebook group, that helped us come to the decision that we really couldn't be bothered with IVF if we really don't have to, because it's messing with hormones, to prevent a miscarriage at 3 and a half months. Traumatic as that was, it's grim enough having to go through IVF, and we had to wait a year. We decided to give it a chance on our own, because that would be what we would face after our first IVF child anyway, and go in with the risk of that later miscarriage, knowing that most other possibilities wouldn't slow us down too much in moving towards our goal.
I didn't write about that appointment closer to it actually happening because I couldn't get my head round the fact that I had so little information from it; I had hoped to get all the answers, and instead I was given more uncertainty.
I started writing about this because I thought I was facing IVF as the only way to have children, because at that stage I was so terrified of having another miscarriage. I took such a break from writing because I was so annoyed with the IVF giving me hope, and that hope being taken out of my hands, bashed along the ground, thrown through a mangle, held underwater, then given back to me, gasping for breath, battered, bruised, and diminished. I took that hope, and I threw it towards my career instead, got a wee boost there, I threw myself into aerial a bit more, and trained harder than ever, and I've never been fitter. I took that hope and breathed new life into it, nursed it back to a bigger and better place, and we tried again, and tried again, and tried again...
We got a letter from the NHS in between Christmas and New Year 2018, inviting us to an appointment on 4 February 2019 for IVF. Given I'm on my PGDE, I knew long before the letter came through that I would be going to that appointment to "press pause" so to speak on IVF until after May. As I have written before, the stress of each thing has helped distract from the stress of the other; it's nice to get that letter and have another thing to focus on, so I am not placing too much hope in it. I'm hoping that my renewed hope does not need to be faced with IVF by then, but only time will tell!
Saturday 19 January 2019
21 August 2017
I last published anything here one year and ten days ago. Everything still felt very fresh, and my perspective at that time was somewhat skewed. I wrote of a job that was "better" than the one I had at the time of my first miscarriage. A job that were I to describe it now, I would say was less of a frying pan to fire scenario, and more of a fire to frying pan scenario. A job that I started on 21 August 2017. It was an improvement, however a number of incidents during my employment meant that it was still on the heat. The threats and abuse that I received from a customer over the phone was laughed off by my co-"workers"; every request for a contract was met with a promise that it would be given soon. This turned out to be a good thing. In the UK, there's no legal requirement for a contract, but there is a requirement for a written statement of terms, within two months of starting work.
I last published anything on here one year and ten days ago. A lot has happened since that time, and my perspective has changed somewhat. I wrote of "next time", referring to future pregnancies. I wrote of work, and I wrote of genetics appointments.
Lets start with changes in work:
My need to get away from a place that initially promised me "occasional weekend working" and "for events" only to hit me with every Saturday in December and full days, meant that I was spurred to try to apply to get into teaching again. I had a few days at home around Christmas where I put together an application and was offered interviews to 2 institutions. One on 19 January 2017, thankfully I had a midweek day off that worked for me, as I yet again had another "event" that wasn't a proper event that I had to work a weekend day for. The second on 25 January 2018, I called in sick for that one. The only time in my life I've ever been off work illegitimately. It was worth it. On 2 February 2018 I found out I had been accepted to that university to study for a "Professional Graduate Diploma in Education." (I always thought it stood for post-grad!)
19 March 2018
Another positive pregnancy test. Pregnancy number two. Hope, Joy, Dreams for the future.
We had decided to start trying again naturally, not to wait for IVF. After an appointment in December 2017 left us a bit more befuddled and distraught about our options, and we worked things out in our heads. So we tried again naturally, and hit the bullseye first try again. I knew before I took the test, knew for a while.
That pregnancy wound up lasting 10 days.
We had agreed to try the following month, and then hold off until after I had started my course. My employers had other ideas however. After my second miscarriage (which they were aware of) they tried to change my terms of employment, without my consent, and with immediate notice, to rotational 7 day working - and put me on the rota for every weekend for the foreseeable future. Obviously I fought that. It was quite helpful that I had not been given a statement of terms, or a contract. I was right. I had a few meetings with my managers, none with any notice, a few where I ended up in tears, admitting things I didn't truly believe. I was made redundant. "The business is moving towards the leisure market, and away from conference business, which is why you were taken on, and why we need to let you go." Ha! At least they gave me £1000 on top of my notice pay. I drove away that Monday morning laughing ecstatically.
Unfortunately the stress around my job, and not being able to afford to hand in notice without another job to go into, meant that we didn't really try to get pregnant that month, our half-hearted attempts resulted in a period appearing during my brief unemployment period. I managed to find a temp job relatively quickly, I hadn't told them initially that I wouldn't be staying, I was bitten too many times by employers, and didn't want to risk it. It didn't take long to start telling people there that I was leaving to study, nor did it take long to tell people the difficulties I face with conception. I almost wanted to stay, except for really wanting a more fulfilling career. I would however like to return in the summer break after my one year at uni. It turns out, that job, and my unhappiness in it, pushed me to re-applying to teaching, and moved me to a much better (albeit temporary) job, where I made some very good friends. Had that very first pregnancy worked out, I'm not sure I would have given the same effort to my application process, I'm not sure I would have been able to.
20 August 2018 I started uni.
8 September 2018 I attended my best friend's wedding, I didn't drink a lot, but probably a little more than I normally would, and realised shortly after that I was pregnant. I lost that one on 12 September 2018, my best friend's 30th birthday.
24 October 2018 and 5 December 2018 gave me two more losses. None of my four more recent pregnancies lasted long, however we were told by that geneticist back in July 2017 that given where on the chromosomes the breaks were, it was unlikely that any unbalanced possibility (besides that which we had in our first pregnancy) would make it to a positive pregnancy test. So actually knowing about them has amazed me, how quickly I find out about my pregnancies, and notice symptoms.
It's difficult to condense the previous year into a few paragraphs. My mental health has massively improved over the past year though, even with all that. I think because I have been able to come to terms with our new normal. Each loss is difficult, but I'm able to rationalise that this child, this life, was never meant to be.
Each life, when I know that it has been created, gives me joy, gives me hope. That's the hardest part of each pregnancy, it's not the loss. It's not being able to share that joy, share those dreams of a life with our family and friends. The next hardest part is that with each pregnancy it's hard not to feel disappointed, disappointed that I have to have that niggly thought at the back of my head, that I can't relax, that I must start to worry, to pay attention to every little thing and question it. I will never again feel like I did with my first pregnancy, the joy and the hope is now tangled up with fear, but with each loss, hope still wins.
With my first pregnancy, I did the done thing, I didn't tell anyone about the baby until after our 12 week scan. Except for family, who we couldn't hide it from, given they were visiting over Christmas! I then had to pull that joy back. Change that great news for the news of an altered future. Since we found out about the balanced translocation my viewpoint has changed. I want to share my joy, I want to scream it from the rooftops. I want people to know that I am growing a whole other human, and I have dreams for my future with them, for their future with siblings, for our future as a family, and for their life beyond childhood. I hope that they do not share my husband's balanced translocation, but are as lucky as my husband's sister, who is clear of it, and has her third child on the way! I have been very open about our struggles to create a family, and my husband and I discussed last year that with any future pregnancy, we would rather share our joy early. Although we know that we have a much higher risk of loss than most, we want to share that joy. There are hopes and dreams for so many miscarried babies that are never shared, I wish we didn't have to keep that grief so private, as it's such a difficult and unusual form of grief.
I wish people could share pregnancy news and it would be normal to acknowledge that there needs to be luck wished towards the pregnancy, that there was no unwritten rule to wait until 12 weeks. I wish people could share it when it suits them, and people don't question when they share it. I know a couple of people who don't like to share widely until much later than that, and those who want to share earlier but feel that they can't. I know someone who last year didn't share because she wasn't sure if the baby was going to survive, yet it was a planned for pregnancy, why should she feel fear about sharing that news? No one hides the news that their terminally ill relative/friend has only a few days/weeks/months to live, they share, and they receive emotional support. Why are so many women denied this? Why should the mothers and fathers suffer in silence?
I don't bring up my miscarriages with my friends often, I don't hide them, but I honestly have no idea which friends know about which ones. It's not exactly something you chat about during a trip to the cinema, is it?
I had another friend tell me about a pregnancy recently, due around the same sort of time as my sister-in-law. She phoned, she admitted she wasn't sure about how to tell me. I wrote about that before, in a post dated 2 June 2017, with two other friends. It's hard to know how to share happy news with someone who you know wants to be able to share the same kind of news. I wish my friends did not feel like they have to dilute their joy for me. Even my sister-in-law wasn't sure how to share the news with us. It's fantastic news, don't dilute it at all!
I'm halfway through my PGDE, I've passed the first two parts, two more to go. I am going through a course that's known to be very stressful. I have had a lot of miscarriages since I started that course. Funnily enough, the stress of each helps distract from the stress of the other.
I'm happy. I have a lot of joy in my life.
I last published anything on here one year and ten days ago. A lot has happened since that time, and my perspective has changed somewhat. I wrote of "next time", referring to future pregnancies. I wrote of work, and I wrote of genetics appointments.
Lets start with changes in work:
My need to get away from a place that initially promised me "occasional weekend working" and "for events" only to hit me with every Saturday in December and full days, meant that I was spurred to try to apply to get into teaching again. I had a few days at home around Christmas where I put together an application and was offered interviews to 2 institutions. One on 19 January 2017, thankfully I had a midweek day off that worked for me, as I yet again had another "event" that wasn't a proper event that I had to work a weekend day for. The second on 25 January 2018, I called in sick for that one. The only time in my life I've ever been off work illegitimately. It was worth it. On 2 February 2018 I found out I had been accepted to that university to study for a "Professional Graduate Diploma in Education." (I always thought it stood for post-grad!)
19 March 2018
Another positive pregnancy test. Pregnancy number two. Hope, Joy, Dreams for the future.
We had decided to start trying again naturally, not to wait for IVF. After an appointment in December 2017 left us a bit more befuddled and distraught about our options, and we worked things out in our heads. So we tried again naturally, and hit the bullseye first try again. I knew before I took the test, knew for a while.
That pregnancy wound up lasting 10 days.
We had agreed to try the following month, and then hold off until after I had started my course. My employers had other ideas however. After my second miscarriage (which they were aware of) they tried to change my terms of employment, without my consent, and with immediate notice, to rotational 7 day working - and put me on the rota for every weekend for the foreseeable future. Obviously I fought that. It was quite helpful that I had not been given a statement of terms, or a contract. I was right. I had a few meetings with my managers, none with any notice, a few where I ended up in tears, admitting things I didn't truly believe. I was made redundant. "The business is moving towards the leisure market, and away from conference business, which is why you were taken on, and why we need to let you go." Ha! At least they gave me £1000 on top of my notice pay. I drove away that Monday morning laughing ecstatically.
Unfortunately the stress around my job, and not being able to afford to hand in notice without another job to go into, meant that we didn't really try to get pregnant that month, our half-hearted attempts resulted in a period appearing during my brief unemployment period. I managed to find a temp job relatively quickly, I hadn't told them initially that I wouldn't be staying, I was bitten too many times by employers, and didn't want to risk it. It didn't take long to start telling people there that I was leaving to study, nor did it take long to tell people the difficulties I face with conception. I almost wanted to stay, except for really wanting a more fulfilling career. I would however like to return in the summer break after my one year at uni. It turns out, that job, and my unhappiness in it, pushed me to re-applying to teaching, and moved me to a much better (albeit temporary) job, where I made some very good friends. Had that very first pregnancy worked out, I'm not sure I would have given the same effort to my application process, I'm not sure I would have been able to.
20 August 2018 I started uni.
8 September 2018 I attended my best friend's wedding, I didn't drink a lot, but probably a little more than I normally would, and realised shortly after that I was pregnant. I lost that one on 12 September 2018, my best friend's 30th birthday.
24 October 2018 and 5 December 2018 gave me two more losses. None of my four more recent pregnancies lasted long, however we were told by that geneticist back in July 2017 that given where on the chromosomes the breaks were, it was unlikely that any unbalanced possibility (besides that which we had in our first pregnancy) would make it to a positive pregnancy test. So actually knowing about them has amazed me, how quickly I find out about my pregnancies, and notice symptoms.
It's difficult to condense the previous year into a few paragraphs. My mental health has massively improved over the past year though, even with all that. I think because I have been able to come to terms with our new normal. Each loss is difficult, but I'm able to rationalise that this child, this life, was never meant to be.
Each life, when I know that it has been created, gives me joy, gives me hope. That's the hardest part of each pregnancy, it's not the loss. It's not being able to share that joy, share those dreams of a life with our family and friends. The next hardest part is that with each pregnancy it's hard not to feel disappointed, disappointed that I have to have that niggly thought at the back of my head, that I can't relax, that I must start to worry, to pay attention to every little thing and question it. I will never again feel like I did with my first pregnancy, the joy and the hope is now tangled up with fear, but with each loss, hope still wins.
With my first pregnancy, I did the done thing, I didn't tell anyone about the baby until after our 12 week scan. Except for family, who we couldn't hide it from, given they were visiting over Christmas! I then had to pull that joy back. Change that great news for the news of an altered future. Since we found out about the balanced translocation my viewpoint has changed. I want to share my joy, I want to scream it from the rooftops. I want people to know that I am growing a whole other human, and I have dreams for my future with them, for their future with siblings, for our future as a family, and for their life beyond childhood. I hope that they do not share my husband's balanced translocation, but are as lucky as my husband's sister, who is clear of it, and has her third child on the way! I have been very open about our struggles to create a family, and my husband and I discussed last year that with any future pregnancy, we would rather share our joy early. Although we know that we have a much higher risk of loss than most, we want to share that joy. There are hopes and dreams for so many miscarried babies that are never shared, I wish we didn't have to keep that grief so private, as it's such a difficult and unusual form of grief.
I wish people could share pregnancy news and it would be normal to acknowledge that there needs to be luck wished towards the pregnancy, that there was no unwritten rule to wait until 12 weeks. I wish people could share it when it suits them, and people don't question when they share it. I know a couple of people who don't like to share widely until much later than that, and those who want to share earlier but feel that they can't. I know someone who last year didn't share because she wasn't sure if the baby was going to survive, yet it was a planned for pregnancy, why should she feel fear about sharing that news? No one hides the news that their terminally ill relative/friend has only a few days/weeks/months to live, they share, and they receive emotional support. Why are so many women denied this? Why should the mothers and fathers suffer in silence?
I don't bring up my miscarriages with my friends often, I don't hide them, but I honestly have no idea which friends know about which ones. It's not exactly something you chat about during a trip to the cinema, is it?
I had another friend tell me about a pregnancy recently, due around the same sort of time as my sister-in-law. She phoned, she admitted she wasn't sure about how to tell me. I wrote about that before, in a post dated 2 June 2017, with two other friends. It's hard to know how to share happy news with someone who you know wants to be able to share the same kind of news. I wish my friends did not feel like they have to dilute their joy for me. Even my sister-in-law wasn't sure how to share the news with us. It's fantastic news, don't dilute it at all!
I'm halfway through my PGDE, I've passed the first two parts, two more to go. I am going through a course that's known to be very stressful. I have had a lot of miscarriages since I started that course. Funnily enough, the stress of each helps distract from the stress of the other.
I'm happy. I have a lot of joy in my life.
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