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Time to start a new journey.

2 Sep

This post will hopefully be the last one on this blog, apart from perhaps the odd confirmation that things continue to go well.

Our big news is that we were joined by our beautiful baby Elliott Lewis on 25 August 2014! Weighing 2.140kg and at 33 weeks 4 days gestation.

Luckily we had a little warning so were able to get some steroids in a week before he arrived and he was able to breathe unassisted from the start. His little tiny organs have done their job wonderfully and only a week later he is actually off all support and just sleeping in a warmed cot. He is still in hospital but after 7 nights he was moved from NICU and is now working his way down to special care. The last thing we need to do is get him to feed by himself as the instinct to suckle hasn’t quite developed yet.

But we feel so lucky! It’s a great gestation after an adventurous pregnancy and he is simply beautiful. Beyond beautiful.

 

 

First picture

 

 

IMG-20140829-WA0015

 

 

1622218_10152689383863210_3795710373421148138_n Last photo is 1 Week later.

But for me this is the end of a long road, and the start of a new one. I couldn’t have believed we would be in this place only 20 months ago when I was diagnosed, Elliott is surely a miracle baby, helped here by the hands and love of many many people. There were lots of hard days, frustrations and just the ongoing fear and stress that illness brings – but every single moment was worth it when we hold our son in our arms.

My only advice would be to keep pushing on, even when doctors might give up, or the options available seem years away and the problems look insurmountable. However, I am fully aware that luck has played the biggest part in us getting to this point, so we are simply grateful.

Hopefully I’ll still hear from people through this blog and that it gives hope to women facing scary times and tough decisions. There can be happy endings!

Kath and Elliott

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23+4

15 Jun

Quick update from me. First, and most importantly, both of my teams have lost in the world cup this weekend! C’mon boys… I’ve got lots of time to watch sport at the moment and it’s no fun watching teams I don’t care about!

Since the last post I’ve been quite busy. Lots of doctors appointments of course, but also trying to squeeze in some work from time to time! I’ve had some visitors and thankfully took a trip to Ireland a few weeks ago which was wonderful. Great break and lovely to see all the kids, even including a quick trip to the beach. Few pictures below.

Nat History Museum 1

Day at the Natural History Museum

Nat History Museum 2

 

 

So, I’ve learned the pregnancy lingo and I’m now 23+4, which is 23 week and 4 days. It’s lovely to be this far and although I’ve still not got a ‘proper’ belly I can feel the baby shifting around and giving me the odd kick. It’s lovely and reassuring. Of course it’s also the opposite because as soon as I go a day or so without a kick I can’t help worrying. However I do know that the baby doesn’t like any pressure on my tummy, so I’ll put pressure on until I get a complaining kick! Probably not in the parenting handbook, but works for me. 🙂

Here is baby Martin at 20 weeks

20 week scan

(Edit: For those that don’t know, my surname is Martin! We are not telling the sex of the baby just yet.)

In slightly less good news, I’m really glad I went to Ireland as I’ve also had a bit of a setback medically and am stuck at home on bedrest for a while. boooooo…. The TAC doesn’t seem to be doing what it should and I am starting to ‘funnel’ through it. My short cervix is still holding closed, but the additional protection we’d hoped for from the TAC doesn’t seem to be working – which is a pity as it was a bit of a pain to get put in!!  Obviously as the baby gets bigger the pressure will increase and so the general advice is to minimise the effects of gravity – basically feet up all the time, or as much as possible. I’m still allowed to walk around and shower etc for the moment, but not really leave the house. Once I hit 24 weeks, and if my cervix is still closed I may go back to work, but at the moment I’ve been told that this time is critical for the baby so to take no chances. To be honest I’m a bit scared to really get back to being active – it just feels safer for the baby with my feet up!

Sounds wonderful doesn’t it! But, I can tell you it gets boring very quickly. I’m working from home for the moment, and will keep that up as long as possible. I’m allowed myself out to go to a painting course I’ve been doing for a while, so hopefully can keep that up until I can show you all my dodgy attempts at oil painting! I’m even thinking of finally making all those photobooks everyone always plans but never has time for. And crossstitching of course… I may have to broaden my craftyness at some stage. A baby can never have too many cheesy handycrafts surely ;).

But I’ve got some lovely things to look forward too, including hopefully seeing my little nephew and letting him ‘meet’ his cousin in early July. Oh and my brother’s coming too of course (but in truth we all know its all about the kids these days!).   Mum and Susan I think are planning to come in August, and I have warned everyone that I may be VERY dull to hang out, but will be fantastic to see some faces from home.

I’m happy enough though, and this will only go on for a few months and so is totally worth it. The longer the better of course!! I’m desperate to get to 28 weeks as I know the risks to the baby reduce significantly from that point.

p.s. I am going to set up another blog (two is never enough!) as I think all this happy pregnancy stuff doesn’t quite fit in here. Most hits I get are still mostly from people in the dark early days, and pregnancy stuff can be painful. I will let you know when I create it.

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.

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

Thanks for the comments!

7 Feb

First posted 25 Jan:

http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/25/thanks-for-the-comments.aspx

I do greatly appreciate the effort it takes to comment! Not sure why they make it so hard… but it seems the joy of achieving it is working for you all. 🙂

Good news today! We have 9 little embryos in the freezer. We didn’t get a quality report as it’s quite early to freeze them, but they do as we aren’t trying to select the best one for a fresh cycle. Apparently the embryos are more stable at 1 day, so we will take our gambles if/when we get to defrost them.

Tonight I have celebrated with the first wine in a while! I will update in a more sober and perhaps more Australia day manner tomorrow.

Quick Update

7 Feb

First posted 24 Jan:

http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/24/quick-update.aspx

EC day today. Things went fine, and we will find out tomorrow the results.

Few minor issues at the hospital, like missing blood tests, missing my vein with the sedative, but otherwise ok.

Got out after 2 (arrived at 7!) so pretty tired this afternoon. Things went well, but I feel a bit flat after all the excitement.

I missed one test with my list on the last post. They also did a nasal swab which actually came back positive for a Staph infection. Nothing serious, but it has to be cleared before the 4 Feb operation. So another week of antibiotics, plus the Synarel. Would have been good to have a break – presumably that means some tests next week to confirm it’s gone. Tests take 3 days apparently.

The antibiotics include a body wash which is also to be used as a shampoo. She said it will be very drying for my already dry frizzy hair! I see this in my future –

🙂

Shamelessly stolen from this website: http://www.buzzfeed.com/skarlan/the-woes-of-having-curly-hair-82j3

p.s. I know its a pain to register on this website, but I would welcome any comments! 🙂

Stage 1b1 Squamous cell carcinoma. Moderately Differentiated

7 Feb

Originally posted 17 Jan. http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/17/stage-1b1-squamous-cell-carcinoma-moderately-differentiated.aspx

That’s what I have. Sounds quite scary when it’s written down, and someone has said to me I need to think a little more about cancer, and probably a little less about the IVF stuff.

So I’ll tell you what I know about Mr Stage 1b1 etc…

Squamous cell carcimona: This means the cancer is in the sqaumous cells. These are the cells that make up one of the layers of your skin, but also the lining of things like inside your mouth, throat, and of course cervix.

Stage 1b1: 

Basically it’s less than 4cm, and has not spread beyond the cervix. It was at least about 2cm as that was what was removed in December.

The next stages all relate to how far it has spread to within nearby and then more distant organs. Lets hope I don’t need to know much more about that!

Stage 1b1, and possible 1b2 may be able to have the trachelectomy. I think it’s not allowed in stage 2.

Moderately Differentiated:

This one is slightly harder for me to understand. I’ve never really heard it talked about, but as I understand it it relates to how likely the cancer is to spread.

Well differentiated is good, cells are similar to normal cells, moderately means cells are changing, and poorly differentiated means that cells have changed, it is a lower prognosis when it reaches this stage. Mine are moderately differentiated, and the other day the consultant was umm and ahh about this. He indicated that if it was poor then I would have to do chemo.

I looked for some images, but I think I might avoiding google image searching for proper cancer things.. some of those pictures are pretty scary.

So – as you can see, I’m kind of on the cusp for both the size and the grade to be allowed to have a surgical option.

The MRI I had yesterday was to get a clearer picture of the stage (size), and I think I will get the results tomorrow. The histology (grade) is based on the information from the cone biopsy in December, and they won’t know more about that until they do the surgery.

Tomorrow is a very busy day actually! I’ll let you know the schedule.

 

18 Jan

  • 08.45: IVF scan at the Lister hospital
  • 10.00: Meeting consultant near Harley Street
  • 12.45 (for 1pm): Marsden hospital for ‘fitness for surgery’ assessment. 

21 Jan

  • IVF Scan at Lister in the morning
  • EUA (Examination under anaesthetic), to decide again if they will do the tracelectomy, but I suspect also just to have a closer look at the tumour. 
  • They will also take a lymph node or 2 to do a biopsy. 

The doctor said the EUA would be 48-72 hours in hospital. But I’ll find out more about that tomorrow.

Now… last time we saw the doctor he said he wouldn’t do the EUA before the egg collection, to not put the cycle at any risk. But now he seems happy to do it ahead of the EC. I’m not that happy about it and will again ask lots of questions tomorrow.

23 Jan

  • 06.10 23 Susan arrives!

23-26 Jan

  • Egg collection

Then I think I get a week off as the consultant is on holidays. Would be nice to go a few days without some random person having a feel around! Next steps all depend in test results, so I am not ready yet to plan.