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No evidence of recurrent disease

29 Oct

As promised, a quick update to say my delayed one year MRI has come back clear. Or in the language of cancer specialists ‘no evidence of recurrent disease’.

Great news!

I have a colposcopy coming up soon too but it is a relief to get through the MRI, as it was long delayed due to the pregnancy. Hopefully I’ll be able to report a clear result from the colposcopy soon.

Transabdominal cerclage

27 Mar

Just a quick post on the next operation, hopefully the last in a while.

What is the surgery:

When I had the trachelectomy the surgeon put in a vaginal cerclage. This is a stitch to give additional strength to the cervix and it is placed somewhere roughly where the cervix used to be. During last year when I had the additional operations they decided to remove it as it was causing me some trouble.

Once I was confirmed as pregnant, the doctors advised that I needed to get it put back in asap. However this new doctor is a big advocate of the more invasive, but much stronger version that is placed via the abdomen. I was a bit surprised at this but in another way pleased as the success rates seem much better. The doctors will cut down to the uterus, and then stitch in some surgical tape around the base of the uterus/top of the cervix.

This surgery is not very common, but has been done on a lot of women who have experienced cervical incompetence for a variety of reasons. It seems more popular in the US at the moment, and certainly more of them have been done than the other surgery I had. Sadly most ladies find out after multiple late term miscarriages, but I know of the risk in advance.

Cerclages

 

The surgery is done much like a C-Section, and will actually be my first open surgery. It can be done laproscopically, but not by my surgeon and the success rates are quite a bit lower (95% vs 75%). Plus this is on the NHS so my choices are more limited! However, I’m really happy to be getting this done, and I’m glad I didn’t have to try and fight for it. With this abdominal cerclage in place I should have a normal pregnancy, and with the weaker cerclage I would probably need extended periods of bedrest and still lower changes of making it to term.

Why do I need it:

Simply put my cervix isn’t strong enough to hang onto a baby long enough for it to survive. It’s been mostly removed and what is left isn’t visible enough to put the cerclage in vaginally. Once the baby starts to get bigger and put pressure on the cervix there is a good chance it would just give way, and I would suddenly find myself giving birth.

Cerclage2This type of cerclage is permanent and will remain for future pregnancies. This obviously means that my cervix can’t open naturally during labour, and so I will be having a c-section. That was always going to be the case as  I think my dodgy cervix couldn’t be trusted with the job anyway!

Interestingly today I had a scan showing that my cervical length is actually 2.3 cm, which is better than expected. It  may be that all the scar tissue that has caused me problems has actually helped by re-creating some of the old structures of the cervix. This makes me slightly wonder if this surgery is totally necessary, but the results are good and the extra security is worth it.

Surgery and Recovery:

I’m headed into Chelsea and Westminster hospital tomorrow (28 March) and will be there for 2-4 days, then back to recovery at home.  Under the care of Nick Wales. I’ve been advised to take 4 weeks off work, I think partially to recover from the surgery, but also then to give the cerclage a few extra weeks to 100% heal and gain strength before the baby gets bigger and puts pressure on it.

I have to say I am not in the slightest bit apprehensive about this surgery, other than the risks to the baby. The baby will get some of the anesthetic, but it will be proportionate to it’s body weight, as my body will spread everything equally to all the cells, and the baby obviously has less cells. They say the baby will just fall asleep, and will be monitored all through the surgery as well as after.  I’ll try not to go crazy on the painkillers after, which is a pity as I love a good opiate!

I just want to get this done and get to week 16 with a safe and secure baby, and then have a boring and uneventful pregnancy. The baby is due on our wedding anniversary 8/10/14, although it will probably come earlier. A lovely coincidence.

p.s  Sorry for all the postings! I’ve been holding back for a while!

Pregnancy and cancer

27 Mar

I’d like to add a little something here. I have listened to so many pregnancy announcements which for me were tinged with pain and sadness (and bitterness if I’m honest) as we have been through this process, so I know this news can be hard to hear. Especially for ladies who have been through cervical cancer and haven’t been as lucky as I have.

I’m not going to say ‘it’ll be fine’, or ‘just smile through it’, because sometimes you just want to punch someone who says that! Just know I’m thinking of so many of you, and I know this may be bittersweet.

 

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!

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