IVF3

27 Mar

Bet you thought you had heard the last of me! This is a post that I wrote a few weeks ago, but only uploading it now.
IVF 3:

You may remember IVF 1, and there was an IVF 2 in October this year that didn’t work. IVF 2 didn’t fail in the normal way, as there are still 3 little embryos that were created, but the cycle was cancelled after egg collection as they couldn’t find a way to return them into the uterus. This was despite a recent operation to dilate the opening. So we now have a dozen frozen embryos living in the Lister hospital!

I referred to these operations and IVF 2 in this post, but the operations were both for fixing the problem I had with my monthly cycle as well as getting access for IVF.

IVF number three really started early in December. I had another dilatation operation with Professor Shepherd on December 3, and he stitched in part of a small catheter to try to keep the cervical canal open. All went well (I’m used to that operation now!) but just a few days later, while we were out on a Santa pub crawl, I suddenly felt something strange, and the catheter basically had fallen out. It was like a punch in the stomach. Made harder by being out having fun, when I just wanted to go home and have a good cry. I was also a bit lost as to what to do. I knew insurance wouldn’t pay for another operation, but if the clinic couldn’t get access then they just wouldn’t try again. Anyway, we had an appointment back at the Lister Clinic a few days later and had a chat to the IVF doctor. She was disappointed to hear it had fallen out, but said we could think about a frozen emrbyo transfer in Janary anyway. But, since very little had really changed, I didn’t really see the point! We left feeling pretty deflated without much hope.


 What is the problem? A little bit of info about IVF will help.

IVF is a three step process. 

  1. The woman injects a combination of drugs for somewhere between 2-6 weeks, depending on whether you are doing a long or short protocol. These drugs force the ovaries to produce lots of follicles, each hopefully containing a developing egg. They do this to give you the best chance of one sucessful embryo. Normally you just have one single egg a month. You are monitored by regular scans, usually every 2-3 days towards the end. Then you are given a ‘trigger shot’ which pushes the final development. 36 hours later the eggs are surgically removed via a giant needle through the side of the vagina. They drain the fluid from each follice, and hope they catch the egg. This is done under anaesthetic, sometimes a general and other times ‘sedation’ where you sort of drift away but are awake. 
  2. The eggs are taken to meet sperm ‘in vitro’ (in glass). Either just by putting them together and letting them get jiggy with it, or via ICSI where an embryologist picks a specific sperm and injects it into the egg. That is known as day zero. On day 1 you find out how many fertilised to create embryos, then wait for 3-5 days biting your nails and going insane. 
  3. The best embryo(s) is chosen and put back into the womb. This procedure is similar to a smear test. They gently push a catheter through the cervix, and place the embryo in the right place.

My problem is step 3. The cervix is easy to find normally, but since my surgery it seems the normal markers are gone, and for a while there was scar tissue that had actually blocked it. The small operations were to try to open it up further, to clear out scar tissue, and try a few options to hold it open so that scar tissue will form around the istmus (cervical canal) instead of closing it up. Until they doctors can get access to do step 3 they refused to start the IVf. Then in November they said they could get access, did step 1 and 2, but by step 3 said it had blocked up again! Frustrating…


Back to the story! Co-incidentally, at the same time I actually had a long awaited appointment for IVF on the NHS. I met then on 13 Dec, and came back on  20 Dec for another dummy embryo transfer, which is when the doctors try to get access to the womb as per step 3 above, but without the embryo. The doctor there was on a mission to prove he could do what the Lister clinic could not! The process took about two hours, and ended up with me taking a fair bit of gas and air as it got more and more painful. BUT – it worked! They suddenly found the access, and the doctor virtually high-fived the nurse!! An odd experience if I’m honest… They then tried to talk to me, but I was pretty out of it by that stage, but very pleased. I saw later on my notes that there is a little map with an x marking the spot!

XmarksthespotSo, after so many months with the Lister, we decided to give this new clinic a go. I liked the strong optimism and hope they managed to re-create, which had been beaten out of us for a while. Plus this was a fully funded cycle, meaning we decided to do one more fresh cycle. Starting on 1 January I did a short protocol, using a very high dose of Menopur, and Centrotide. I think it was 2 shots each day, and things went as normal. 2 weeks of stimulation, trigger shot and EC took place on the 15th of January. EC wasn’t under general anaesthetic which was a new experience. They sedated me, which makes you very hazy, but I do remember the process. Not too bad, although I was pretty nervous about it.

Then we entered the unchartered territory of letting the embryos grow. I had 9 eggs, 8 of which were mature. They were all ICSI’d, and one didn’t survive the process. Of the remaining 7, 2 didn’t fertilize properly, so we were down to 5 by day 2. It’s so stressful!

By day 3 there were still 5, but only 3 looked ‘right’. Normally with only three they would put a couple of them back there and then, but I am only allowed a single transfer (long story), so we took the scary decision to give them 2 more days to get to Blastocyst. You can’t transfer on day 4, not sure why.

On the 20th we didn’t get a call and I was convinced they had all died. When we arrived they told us we had 1 little embryo which had made it to Blastocyst. It was a surreal experience really. The embryologist talked us through where the embryo was at, and showed us some general images, but not our own embryo. I was convinced they were all quite poor, but they decided to put one back anyway just to give something a chance. Then next thing I’m signing a form agreeing to allow the remaining 4 to ‘perish’. Its sounds so silly, but it felt sad to say goodbye so soon!

5 Day blastocyst

5 Day blastocyst

The actual transfer was a non-event after all that prep! The map clearly worked, although I was encouraged to take some nitrox anyway just in case it was painful.

Then you are sent home to relax for a day, then go back to normal. Normal?!!?? Let me tell you that there is no ‘normal’ in the 2 week wait. The first week I was ok, lots of strange cramps, but that can be caused by your body just recovering a bit from the IVF process. The cervix has to relax back and close, and your womb is dealing with something going on… hopefully…

The second week I was a wreak. I was taking progesterone, which is the hormone that causes all the normal pre period symptoms (bloating, breast changes, headaches, moodiness) and also all the normal early pregnancy symptoms (bloating, breast changes, headaches, moodiness) so it’s very hard to know if any symptoms are pregnancy or period!! And I was analysing every twinge, every feeling, every minor change going on in my body. It drives you slowly insane!

The day before I’d decided to test I was also on a strange work course all about maximising your potential, where we were expected to talk about what personally motivated us, what crisis we have faced and how we recovered. I can tell you with certainty that is the LAST thing you should do when charged up on hormones, stress and fear! There may, ahem, have been a very embarrassing moment of near tears in front of my colleagues… followed by a proper cry on the tube. I realised I had to test to sort out my sanity if nothing else.

My official test day was meant to be 2 weeks after the transfer, but I knew that I should get a result one way or the other a few days earlier. Plus the OTD was a Monday, and I couldn’t face a negative test and then going to work. So, 1 Feb, I woke up at 6am and worried for a while. Then worried a bit more, and procrastinated. Finally I had to get up (largely driven by an impatient bladder), had another little cry, and then pee’d on a stick. And I watched nothing happen… I watched that stupid control line appear that I had seen many times before, and then… and then… amazingly, miraculously, wonderfully, a second line slowly began to appear. Pale, but definatly there.

FRER

Shock

With shaking hands (not a cliche in this case) I got out the posh digital test, and tested again.

Digi

OH MY GOD! This is an everyday, perfectly normal event that the vast majority of women will experience in their lives, but still a wonderful overwhelming magical moment. After almost 4 years of heartbreak, 3 IVF’s, a little bit of cancer – there was that elusive second line. I didn’t quite believe it, so a checked a few extra times. 😉

Tests

Baby brain already kicked in by the last tests. Date should be 6/3/14, and the last one who knows!

So here we are! I’m 10 weeks pregnant now, and just had another look at my little resident. I’ve had a few scans, a bit of a scare with some bleeding, but now he or she seems to be settled in (its definitely only one). There is still lots going on medically, and I will blog about the upcoming next steps, which are unconventional to say the least, but right now I’m just an everyday normal pregnant woman and we are both so happy to have this chance. It’s just so amazing and wonderful (and scary, and stressful and terrifying) but mainly wonderful!

Update: Actually I’m now 12 weeks, I couldn’t bring myself to post this until this latest round of tests were completed. I still can’t really believe it. But the baby passed all tests today with flying colours, and operation ‘lock that baby in to cook for 6 more months’ starts tomorrow. Literally an operation… which I will post about soon.

Clinical Trial

2 Feb

I found out the other day that during my treatment I was involved in a clinical trial. I didn’t actually realise! Although now I think about it there were a lot more forms for that scan.

Scan offers baby hope to women with cervical cancer

Another Article

I met Professor DeSouza, who is referred to in this article and she was very gentle with me at a super stressful time. I don’t think the scan changed my treatment plan. However, my surgeon did say that he has put me in newer group of patients where he left some cervix behind, which perhaps was influenced by the scan that allowed him to see exactly what amount of cancer was left.

I feel slightly famous! 🙂

Farewell 2013

30 Dec

It’s that time of the year when there are lots of shows on TV looking back on the year, and starting to look forward to 2014. So I thought I would do the same – it’s been an eventful year!

Going back exactly 12 months, this time last year I was just home from Australia and preparing for my first MRI on NYE 2012. Even thinking about it now reminds me of how frightening that whole time was. It seems bizarre now to be afraid of scans, but I suppose they held my fate at the time. Nowadays I enjoy a good MRI! I can even provide tripadvisor style reviews of the facilities in various hospitals.

Reviews

January was the month of appointments and IVF. And probably most importantly I was referred to Dr Shepherd

dr-shepherd-photo

Ahem.. I mean, Prof Shepherd. 😉

I think it was when I had my first appointment with Prof Shepherd, and got the all clear back on the MRI and CAT scans that things felt different. It was from then that I felt optimistic that it was going to be all right, that the cancer was small and early and I was in good hands. Maybe the 9 embryos helped, but my normal optimism came back sometime in January, after really struggling in December. I actually had a bit of a breakdown at work in January and went to see a counsellor. She told me to stop doing anything I ‘should’ and only what I had to. That was a great relief, as I think I needed someone to say to me – stop trying to keep everything normal. This isn’t a normal situation, so stop trying to make it seem normal! It was great advice.

January to June:

Well, that’s all covered in the rest of this blog really. Operations, and another one , lots of daytime TV (including a wedding!), some travel, fundraising for Macmillan and Cancer Research UK (thanks!) and then back to work.

After June:

The last post I had was in June, and a lot has happened since then. My MRI in June came back clear, but I was really knocked sideways when my friends didn’t.  It just feels so incredibly unfair for me to be fine, and for her to have to continue down the next steps. It reminds me both how lucky I am, and how random and heartless cancer is. But that is not my story to tell.

Then things got a bit quiet as I returned to reality. Getting back to work was ok. As always I rushed it a bit, thinking I would be able to hit the ground running, but it did take about 3 months (my manager may say more!) to get back into the rhythm of things. My boss said he struggled to manage me to start with as my attitude has changed – which I would have to agree with. I enjoy my work, but I’ve definitely got less desire to constantly be pushing ahead. Things that would annoy (such as missing out on an important project or meeting) just don’t bother me much anymore. I think I appreciate more now that I have a nice job, lovely people, not too many hours and well paid. Why was I ever pushing for more!!?

October:

As the year progressed a minor problem/side effect from the operation has become more and more of an issue. I understand now that treatment for cancer means the cancer goes away, but your body will be changed by it forever.

(Warning – Womens parts discussion approaching!) 

Basically there is now scar tissue causing a partial blockage where my cervix used to be. That has resulted in blood being trapped inside me, random bleeding/hemorrhaging (oh what fun that day at work was) and generally the need to have another operation to try to fix it.  I’ve now had two quite minor operations to try to fix it with limited success. But I’m optimistic the doctors will find a way! The procedures themselves are not too bad, and easy to recover from, it’s just frustrating that I am not allowed to move forward until it is finally resolved.

We did in fact look at attempting IVF, but after much excitement it all came to a grinding halt due to this blood blockage  issue. We will hopefully get to try it in 2014, but I think we have learned not to try to plan too much, as plans fail and it’s just depressing. Hope can be very cruel!

But – despite such negativity – I know things will improve – so BRING ON 2014!

201314

2103 has been a tough year overall for my family. Without going into details, Cancer wasn’t the worst thing we had to deal with! Generally everything that could go wrong did go wrong. On the flip side, I was also successfully treated, my sister found her dream job, and while there are still problems lets hope 2014 brings better luck!

But – back to the point of this post – basically Happy New Year!!

I will celebrate the New Year tomorrow with a hope for a better 2014, and a celebration that 2013 is finally over, thinking particularly of all the ladies who have contacted me through this blog, who are at various stages of their treatment and recovery.

So, to everyone who passes by this blog – here’s to a healthy and happy 2014!

new-year-eve_2096433b

What’s the point?

16 Jul

I had a nice chat to my cousin the other day, and she was asking me if it was ok that she had been reading this blog. I appreciate that in many ways it was very personal, but I made the decision early on that this wasn’t something to be embarassed about, and to try to be as factual as possible. However, she made me think about the various people reading here, and what the point of the whole thing is/was.

Teaching myself.

I wanted to understand what was going on, and I find writing things down in a way that is clear and logical forces you to clarify your own thoughts, and double check your assumptions. Maybe it is my long lost legal training, but I feel the need to ensure anything I write is backed up with facts – or at least the selective facts that I choose! There is lots of information scattered across the web, and this blog gave me a way to pull it together and remind myself where I was up to.

Informing family and friends:

With so many of my family and friends around the world, it is easier to let them know what is happening via the blog rather than lots of conversations. Treatment is tiring, and while I know people are worrying, making 10 phone calls straight after operations, or even when you are at home feeling a bit flat, isn’t easy.

Also, when I do see people it means we can skip a little over things that have already happened.

During the early stages, when I was so stressed and unhappy, I did find that everyone asked so many questions. Please please… no-one take this the wrong way – I love that you were asking, and would be upset if you hadn’t, but I did find it helpful (for all parties) to give people a little more knowledge.

why

At the start of cancer treatment, the big problem is that you just don’t know where it is, has it spread, or what is to come. The first operations were actually mainly diagnostic, plus all the scans, endless meetings with a variety of doctors, and then even more tests. At that stage things move really fast, and plans change day to day. I had to learn to stop trying to control things, and just take each change in direction as it happened.
However, logically at this stage family and friends want to know what are the likely outcomes, what are the treatment options, what’s the prognosis for various results – and sometimes you just want to say ‘I don’t know, I’m not thinking about it yet. I’m trying to take each day as it comes – but it’s great you want to know, so go read the blog for details’

(To be honest, more often it came out as ‘I don’t know – I DON’T F*%&£NG KNOW!!’ –> then tears and disappear to bed. Or I would end up in a random argument about something else. But the nice controlled statement above is what I really meant!)

Despite how calm I may have appeared on this blog, I was a mess for quite a while, especially early on. I know in the end this was a pretty ‘minor’ cancer, but at the start you can’t help but imagine every scenario, and all the fears that cancer brings with it. I spent many nights literally walking around the flat in circles – not able to sleep, and just trying to shut up my mind from worrying about everything and anything. This blog helped me by clearing my head, and removing one worry – which was how to tell people quickly and effectively what was happening.

The sleeping pills also helped!

The support of the crowd

crowdsurf

I really liked that so many people would view the blog. It did make a big difference heading into operations knowing there was goodwill coming from around the world. I’ve always loved the idea of how small the world is, and how we are held together despite long distances.

You know those maps you get on the plane – showing you path from start curving around the earth to your destination? I imagined something like that with goodwill and thoughts, all working their way to my little room in the Marsden hospital. I’m not sure I believe in the power of prayer, but the mental image of support from so many people was definately in my mind as I shut my eyes going into surgery, and it makes a big difference.

Flightpaths

Helping others:

I can see the search terms used for people who find this blog. Although the most popular is ‘legs’ 😉 , followed by ‘I’m fine’ (!!) the rest mostly are various searches by people dealing with early cancer, CIN3, colposcopies, and some heart wrenching searches like ‘how much longer will I live with cervical cancer’. They come from all over the world, and even without me posting for a long time there are hits every day.

Some get in touch with me, but many don’t, and I hope this blog has helped some people with their fears, and to understand that they are not alone.

guidance

So that’s why this blog exists! It’s overpersonal in many ways –  but writing it is easier than explaining a trachelectomy in person!

I’m fine… really… I am!

21 Apr

Firstly, a little retrospective on being ‘fine’.

Obviously I’ve been asked a lot recently how I am, and I think I always answer ‘I’m fine’. That’s not just me being polite, I do really think at the time that I am fine. People close to me know I am a terrible terrible liar, and so trust me, I do (and did) believe it every time.

But, I have learned over time that I am often wrong on how I feel, strangely enough. I’m not trying to be a martyr, or selfless. It’s more that I really do think I’m fine at each stage, but it’s amazing how every time I look back I think ‘wow, I’m so much better now, I really wasn’t fine then… but I’m fine now!’. And then a few weeks/months later I think… I really wasn’t in as good shape as I thought. It seems that as well as being a terrible liar, I am excellent at kidding myself.

Image

This image is a bit dramatic, but in many ways it was me hiding things from myself. Insane I realise.

Some key moments I look back at when I was ‘fine’, include the mistake of going back to work at a time when I was dealing with leaving family, accepting I have cancer, doing IVF and somehow thinking I could manage a smooth handover. I thought I was fine… but clearly I wasn’t, and I’m not sure what planet I was on thinking work was a good idea – either for me or my uncomfortable workmates. It took a minor breakdown in the bathrooms, and a visit to a counselor to snap me out of it and realize I had to stop going to work. Lets be honest, I wasn’t actually doing any effective work anyway.

Another good moment was the excellent decision to walk to the GP the day after I was out of hospital, because I was ‘fine’. And numerous others… not quite as individually silly, but things that look totally different looking back at them, and I find that quite interesting.

I’m sure psychologists have theories about why we kid ourselves that things are fine when they aren’t, but I do think it’s a useful part of recovery.Perhaps I am naturally optimistic and I think once the treatment started I never really believed it would go badly (except at 3am when my brain wouldn’t shut up – but no one is asking then!). This document captures it a little.

BUT – ignoring all that, I thought I’d let you all know that I’m fine! For sure this time! 

I reserve the right to look back and change my mind if necessary, but at the moment I feel stronger than I have in a long time. I’ve learned that getting better is a long road, as much mental as physical, and I shouldn’t be surprised to look back and see things differently in time.

And even looking back a few weeks to the afternoon tea, I’m better now than I was then. I think the holiday was great as it got me out of the house. I feel physically stronger, and mentally more resilient too. We did a lot of long walking touristy days, that were soooo tiring to start with, but by the end I felt so much more confident in myself and in my body. It’s easy to be ‘fine’ at home with everything familiar around you, but now I also feel like I can confidently face the world.

Tomorrow is the next big step – going back to work. I’m a little nervous, but I’m sure all will be back to normal soon enough, the only change will be that Health and Safety will make sure I have a fancy new chair and and as much desktop egonomics as they can find! It is an insurance company after all, they know a risk when they see it.

Image

Next appointment with the doc is actually only a week away, so I will do a quick update after that, but I’m assuming everything will be ok as it’s a standard checkup. I will also find out when the next set of scans are planned, which will be another good milestone.

End of tonight’s rambling. 🙂

Thank You

8 Apr

As we prepare to go on holidays, this is just a quick note to say thanks to everyone who came to the Afternoon Tea yesterday, as well as all those who have donated online. We also raised another £100 yesterday from our mini race meeting, and thanks to everyone as I sense that most of the winnings were returned to the pot.

We totally forgot to take any pictures, so apologies I have nothing to show apart from this one before people arrived.

IMG-20130407-WA0001

As you can see – we have to give special thanks to the sun, which made a surprise appearance on Sunday! It was last seen around August last year, so it was some good timing. Hopefully when we get back it this winter will finally have finished properly.

As promised, I will add £500 to each fund, but I will leave them open for a few more days just in case anyone has forgotten! Here are the links again

Cancer Research

MacMillan

7 April Afternoon Tea Fundraiser and Celebration

1 Apr

invited_4665c

This Sunday, 7 April, I am opening up my little flat to have an Afternoon Tea Fundraiser, and general celebration of getting better! Technically this week is my last week of sick leave, then we are headed off to Spain for a proper holiday. I go back to work on the 22nd of April, so the end of my long winter ‘holiday’!

It won’t be too posh, but I can promise homemade scones, cakes, various savouries, and Disney movies to keep the little people distracted if needed! And, of course, alcoholic beverages to keep the adults distracted.

Devonshire Tea

 

The cakes and champagne will be laid out from 2pm, and if you are in the area I would love to see anyone who I may not have already spoken to directly. Please get in touch on kmmr99@hotmail.com and I’ll send you all the details. While I have pretty much given up all my sense of privacy these days on this blog, I’m not quite there with giving out my address!

If you can’t make it – then can I please ask you to have a read of the posts below and make a small donation.

party