It’s been a while…

It’s been a long time since I last wrote a blog post. I got to the point where blogging had become a chore and I’d forgotten what I was even doing it for.

A lot has happened, a lot is still happening, and I think maybe if I got some of it down, it might help me process things.

I don’t even know where to start.

Mum has Alzheimer’s. She has declined so much over the last two years to the point where she can barely string a sentence together. She can’t go to the bathroom alone, she gets scared if she’s alone for more than a minute or two. The grandchildren she adored and who were her world are now nothing but a noisy irritation to her. She’s not my mum anymore, not really, and it’s horrible.

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My parents are selling their house, my childhood home, and buying a bungalow. Whilst I know this is the best thing for them, I’m sad that they have to. And quite frankly, I’m not sure how mum will cope.

The people I thought might understand and might be there for me, aren’t. I know that people have lives to get on with, I’m not so completely ignorant of that, but sometimes it might be nice for people to involve me, to include me in things where I don’t have to be “on call”. I have elderly parents who need me, I have a husband and children who need me, but I still have feelings, and it seems as though not many people care about them.

I’ve reached a point now that I’ve made a decision.

I’m going to stop trying to fit in where there clearly isn’t room for me. I’m going to stop making the effort. Because I can’t do everything. Getting through each day is struggle enough.

Life-is-too-short

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Fallen at the First Hurdle

I was so determined to get off to a good start on the whole weight loss thing. I’d started c25k week 2. And then I got ill. And then the snow came.

I’ve had a horrible chest infection/cough/cold and still have it. I started antibiotics the other day so hopefully they will start to kick in soon. That and the snow has meant that I haven’t been able to continue with my c25k. So I am wishing away the snow, and I am wishing away the illness. The boys have both been poorly too, although they seem to be on the mend now – touch wood!

So this week has brought a maintain in weight, whereas last week was a 2lb loss. Hoping to feel better soon, and hoping that my motivation comes back.

Mum Reinvented has a competition over on her blog called Get Fit, Feel Epic from moneysupermarket.com so I am entering to see if I can get my hands on a Fitbit Zip Wireless Activity Tracker, worth £49.99 and Fitbit Aria Wi-Fi Smart Scales, worth £99.99. Why don’t you go and have a look?

In GP’s We Trust?

At the end of July 2009, I went to the GP’s for the first time about my Hodgkin’s Lymphoma symptoms. I say symptoms plural. Although, back in the July, it was just one symptom. Alcohol induced pain. It took a further two visits over another four months before I even got referred for an x-ray and then another two months until I was finally diagnosed. A total of six months and twenty days from my first visit, until diagnosis. By that point, I had a persistent cough. When I say persistent, I couldn’t even get through a sentence without coughing.

This might sound unusual, however, a survey undertaken by the Teenage Cancer Trust has shown that out of 300 patients they asked, doctors had missed common signs of cancer in a third of them. And on top of this, a quarter of the patients said they had to go back to their GP at least four times before they were diagnosed. I guess I should be grateful I only had to go back three times.

You don’t always get a lump when you have cancer. I didn’t. My mass was in my chest and there was no cancer present anywhere else. So, often, the symptoms are mistaken for a virus.

Last week, the Teenage Cancer Trust launched it’s first cancer awareness week and are trying to get schools to talk about cancer in the classroom to make youngsters aware of the signs and symptoms.

The most common cancer in youngsters is Lymphoma, and Lymphoma is the 5th most common cancer in the UK.

We trust our GP’s. And most of the time we should, Most of the time it will be a virus, or something non serious. But we need to make ourselves aware of the signs and symptoms that it could be something more serious and not be worried about being persistent with doctors if we feel the need.

Sweet Relief

The last 3 weeks, it’s safe to say that I have been a bit of a mess. Since being released from hospital, I’ve had a varying amount of hospital appointments, tests, and finally an MRI. I was trying to stay positive and believe that it wasn’t a relapse, but the more I tried, the more I failed and I was carrying around this big weight on my shoulders.

They weren’t sure if the thing pressing on my heart was nothing, a relapse of Hodgkin’s, a relapse of thyroid cancer or something that could cause me to go into heart failure within 48 hours of giving birth.

I’d convinced myself it was the Hodgkin’s. And I knew what that meant. It would mean delivering the baby early. It would be inpatient chemotherapy and a stem cell transplant, which would basically mean a month in hospital. A month away from my boys. Someone else looking after and bonding with my newborn, so that when I came out of hospital he wouldn’t know who I was. Not being able to breastfeed.

I have not been in a good place.

The MRI scan yesterday was horrible. I don’t usually get claustrophobic, but I really didn’t enjoy being in that confined space. I kept my eyes closed throughout the whole thing so I couldn’t see the tunnel so close to my face, and the baby was kicking the whole time. I don’t think he liked it much either.

I didn’t expect to hear anything until next week when I go for another haematology check up, but last night around 6.30pm, the phone rang and it was the cardiologist who referred me for the MRI. He had the results for me.

ALL CLEAR!

I cried on the phone, when I heard his voice I was convinced it was bad news. Why would he be calling so soon if it wasn’t, but then he told me that he’d seen the radiologists report and that it was all normal. He said some other things as well, but I can’t remember exactly what as I was just focusing on the all clear bit.

To say I’m relieved is an understatement. I feel like the weight of the world has been lifted off my shoulders. It means I can enjoy my pregnancy again, and I might actually feel like packing my hospital bag and sorting through newborn clothes. I’ve been putting it off for the last few weeks, not really knowing what was going on, and whether I would need to buy tiny baby clothes.

I know the chance of relapse is still there and I know I’m not really out of the woods until I reach the 5 year mark (just another 3 to go), but for now I am still cancer free, and that is enough.

Roll on 5 weeks and 4 days!

The Week It All Went Wrong

Even though I’m a high risk pregnancy, apart from a tiny bit of spotting at 18 weeks, I made it to 31 weeks without any problems.

Then, quite quickly, everything went down hill.

I’d had, in the space of about 10 days, some episodes of seeing flashing lights. The last one was last Monday evening, and it lasted for about 15 minutes, whereas the others had only lasted about 2, so I thought I’d make an appointment with my GP to get it checked out.

I went to the GP on the Tuesday morning, and my blood pressure was fine and there was no protein showing in my urine. She called triage anyway to see if they wanted to see me. Apparently, the did, so I called my dad to watch Jake, and up I went. I only expected to be gone for a few hours, but I was sat in the waiting room for 2 hours before I was even seen.

I was seen, baby’s CTG was fine, blood pressure was fine, but urine now had some protein in it. How exactly it magically appeared in the 3 hours since I was at the GP, I don’t know. I think they also decided there were some white cells in it, and decided to give me some antibiotics to treat a water infection and to take some bloods to be on the safe side. I was discharged with a prescription and an agreement that they would call me if my bloods were abnormal.

I got a phone call about an hour later saying that in hindsight they should have kept me until my blood results came back, because one of my liver functions (ALT) had come back abnormal. So they had found me a bed in the antenatal ward and were expecting me about 7pm. So, time to pack a bag, wait for Neil to get home from his meeting in Coventry and organise for my in-laws to have Jake over night.

We got to the hospital just around the same time that shift change was happening, so it took ages for anyone to come and see me, and she had to go and get my notes from triage in order to find out what was happening. It works out that the normal range for this liver function is somewhere between 5 and 35. Mine was 54. So not too high, but high enough with the trace of protein they found and the flashy lights for them to be concerned. I found out they wanted to keep me in a minimum of 2 nights as they wanted to do a 24 hour urine collection starting from 9am Wednesday morning. They also wanted to repeat my bloods to see what was happening with the liver function (the next blood test showed it had dropped from 54 to 51).

So, two nights in hospital. I was then discharged on Thursday with no major concerns, but told to go back if I had any more flashy lights etc.

Friday came, and I just had a day at home. The phone rang, and it was the cardiologist I saw last week. I have seen a cardiologist twice and had two echo-cardiograms this pregnancy due to my chemo and the fact that one of the drugs is potentially cardiotoxic. The consultant told me last week that all looked fine and that he would see me again in a year. So I put it to the back of my mind.

When he called me on the Friday, he told me that he and his boss had looked at the echo together and noticed that my right atrium looked slightly narrow when looked at from a particular angle. In order to get a better look, they have referred me for an urgent MRI. He says that this is because the further along in my pregnancy I am, the more likely I am not to fit into the machine, and that I should expect an appointment in the next week. Later on, I get another phonecall saying that the MRI department is extremely busy and can’t get me in until the 28th Feb, which is over 2 weeks away. They may have a cancellation on Wednesday though, so I am to wait and see.

I thought we were all done, and then about 5.30pm, I had a phone call from my endocrine consultant who is responsible for my care throughout this pregnancy. She apologised that she hadn’t had chance to see me whilst I was on the ward and asked how I was feeling. Apparently, they have a “plan” for me. I need to see my haematologist this week (luckily I already had a routine appointment booked anyway) and ask to see the head of the department as that is who she has been speaking to. I am to have more blood tests done, as well as the aforementioned MRI, but now also an ultrasound of my neck.

“Let’s be blunt…” I said to her. “All these tests, are you worried the cancer is back?”

“We just want to make sure everything is ok, it being back would be worst case scenario, and there is only a slim chance.”

That there should have been the sentence that reassured me, but it didn’t. The last two times I have been told “it’s only a slim chance” I have been told I have cancer.

I have been trying to stay calm and not worry, but it is hard. Things that should reassure me are the fact that surely if there was a mass on my chest causing my atrium to narrow, that would have been seen on the echo cardiogram? And surely, if a mass had been seen on my chest, with my previous cancer history, they wouldn’t make me wait until the 28th Feb?

My white count is perfect at 9.7. When I had Hodgkins, my white count was high, even in the early stages.

When I had Hodgkin’s, I had alcohol induced pain with even a few sips of wine. I had half a glass on wine on Friday (no lectures please) and didn’t even feel a twinge.

So, I am hoping beyond hope that they are just being cautious based on my history and based on the fact that I am pregnant. But it doesn’t stop me worrying. I don’t think I could cope going through all of that again.

Here’s hoping I don’t have to.

My Body, My Baby, My Choice?

Apparently not. Not when it comes to the decision of where I have my baby.

The hospital I am being looked after at, has a very lovely birthing centre. Originally, when I was pregnant with Jake, that’s where I wanted to give birth, then we decided on a home birth, then I had a bleed at 35 weeks which put an end to anything like that, and I was only permitted to have a birth in the delivery suite, after being induced and being hooked up to monitors. It wasn’t a “bad” experience, it just wasn’t the experience I wanted.

This time, Neil and I chatted and we agreed that after seeing how down right messy childbirth is, we would opt for the birthing centre this time, and not go for a home birth, although, if I am totally honest with myself, I would still go for one if Neil weren’t so against it.

Fast forward to me seeing my consultant for the first time and asking her if the birthing centre was an option and I am met with an almost certain no. I’m told that because I don’t have a thyroid, it’s more than likely a no for me. So I left it and said no more, thinking that if all my tests come back clear that I would ask again.

So I did, and again am told “I wouldn’t like to say, but becuase of your thyroid…blah blah blah”.

Now, I know that I’ve had medical issues, but these are all dealt with now, and I am being tested every 4 weeks to check my thyroxine levels. My blood pressure is fine, my echo-cardiogram was fine, so if my GTT (gestational diabetes test) comes back fine and I continue to have a problem free pregnancy, then I don’t see what the problem is, especially when the midwife led birthing centre has an adjoining door to the delivery suite should any complications arise.

So I’m unable to choose to give birth in the birthing centre, but I am allowed to request a c-section? Am I the only person this doesn’t make sense to? Am I entitled to ask for a second opinion?

The Story So Far…

So, I announced my pregnancy, and then I disappeared. I’ve had so many lovely comments from people, so thank you. We are very excited, but at the same time wondering how we are going to cope with two!

I found out I was pregnant on August 1st, very early on actually, I was only 3 weeks and 3 days. I left it a few days before I went to the GP, because I wanted to make sure it was really happening, and not another chemical pregnancy/early miscarriage again. Quite frankly, I’m not sure how I would have coped with another. But at the same time, I knew I couldn’t leave it too long before I went to the GP because I had to be referred to the endocrine team because of my thyroid.

To be totally honest, I thought that if anything was going to make for a complicated pregnancy, it would be because of my 6 months of chemo. I was wrong. What makes for a complicated pregnancy, is my thyroid, or lack of. I never thought that not having a thyroid would class me as a high risk pregnancy. Apparently, it does.

I need to have blood tests every 4 weeks to monitor my thyroxine and calcium levels. I must have extra growth scans at 28, 32 and 36 weeks. Because mum is a diabetic, I must have a Gestational Diabetes test done at 26 weeks, add to the mix that I am rhesus negative, and because of my chemo I must have an ECG done fairly soon and another one done in my last trimester.

The hospital I am under has a very lovely birthing centre. I was unable to use it when I was having Jake, because I had a bleed at 35 weeks and therefore they wanted to monitor me in labour. We were really upset about this, because we had agreed that we were going to have a home birth. So this time, I really wanted at least a birthing centre birth, but it’s looking like that won’t be allowed. However, if all of these tests I’m having come back normal, I will ask again, and ask for a second opinion if necessary.

I am now 12 weeks and 1 day pregnant, but don’t have my official dating scan until Thursday (12+6) and the wait is driving me crazy, although I think we need to take out a second mortgage for the scan pictures we want to buy as they are a whopping £6 each!

We paid for a private scan at 7 weeks and saw a little heartbeat flickering away, and we had a scan at 10 weeks as I had some spotting and some pain, so the doctor sent me to our local Early Pregnancy Unit for a scan. Again, all was fine and we saw a tiny baby measuring 31mm with a healthy heartbeat. So we decided to announce it to our friends and family because they say that if you see a heartbeat at 10 weeks, the chances of miscarriage drop to 1%. Fairly good odds, I’d say.

I have felt completely different throughout this pregnancy to how I was with Jake. I was never sick with Jake, but this time I have been very sick. The lovely Jax is very kindly sending me some  Lillipops Iced Soothies designed for pregnancy nausea.

So that, in a fairly big nutshell is the pregnancy so far. I’m so glad to be able to share this new journey with you, rather than a cancer one!