Lymphatic Cancer Awareness Week 15th – 19th September

This week is Lymphatic Cancer Awareness Week. Did you know that more than 14,000 new cases of lymphoma are diagnosed each year in the UK, making it the most common cancer in the under 30s and the 5th most common cancer diagnosed overall. Despite this, awareness of lymphoma is relatively low and many people have not heard of it unless they have been affected in some way.

I’ve always been open about the fact I had Hodgkin’s, I’ve never tried to hide it. I think people don’t always realise that Lymphoma is cancer, and I think it’s important to raise awareness.

I will never forget the day that I got taken into a room, with a young female doctor, and told “You have Hodgkin’s Lymphoma”. Obviously, I knew what it was. I’d been telling the doctors for 6 months that I thought I’d got it. But hearing those words and it becoming real, your world just shatters. Yes, it’s one of the most curable cancers, but it doesn’t have a 100% cure rate. There was still a chance I could die.

Jake and I a few days after diagnosis - the day I had my hair cut off

Jake and I a few days after diagnosis – the day I had my hair cut off

I guess I am one of the “lucky” ones. I’m four years out of treatment now, and the chances of it coming back are slim. Slim, but not nil. Once you have been diagnosed, it never goes away. I’ve got physical and mental scars. It was a scary time, it was awful. Being used as a pincushion when they couldn’t find a vein for cannulas, losing my hair, knowing that the chemo was going to make me feel like s**t, but having to endure it anyway, whilst looking after an 8 month old, having to ask for help to look after him on days I knew I just wouldn’t be well enough to, spending a week in hospital with pneumonia, including a stint in intensive care.

Rocking the bandana

Rocking the bandana

Just because people aren’t aware doesn’t make it any less real.

The Lymphoma Association have lots of information and support available, so go and read up on it, but I am also aiming to write a couple of posts this week to tell you the signs and symptoms to look out for.

Jake and I after the all clear

Jake and I after the all clear

Three Years

Yesterday was three whole years since I started chemotherapy. Jake was this big:

Image

It doesn’t seem like it was three years ago, and a lot has happened since.

I still remember how people used to say “You’re so brave.” I wasn’t. Not in the least bit, I was just doing what I had to do and what anyone else would have done.

I probably wasn’t the most sensible at times, going to soft play with Jake when there was loads of people around, and kids with coughs and colds. And I probably shouldn’t have done Race for Life that year (I ended up in hospital for a week with pneumonia) even though I took it at a slow pace, and our group was one of the last to finish! But, I was just getting through in any way I could.

RaceforLife

Three years on and things are “normal” again, in as much as normal can be. I still have check ups, although I have finally moved onto six monthly appointments now. Hopefully, in two years I can be discharged completely.

Zack will be one soon, the baby I wasn’t sure I’d be able to have. And I do feel guilty about the fact that I get to spend more time with him, and that the time I do spend with him isn’t tainted with hospital stays and general post chemo yuckiness, whereas I never got to do that with Jake. And when Jake is old enough to understand, I will explain to him as best I can.

Zack

Jake will be starting school this year, and I am proud of the little boy he has become. He has his moments, like all three year olds, but he is mostly a well behaved, lovely little boy. Me? I’m just glad I get to be there to see him off on his first day of big school 🙂

Jake

You can be a victim of cancer, or a survivor of cancer. It’s a mindset. – Dave Pelzer

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.

Lymphatic Cancer Awareness Week

This week (12-18th September) is Lymphatic Cancer Awareness Week. The Lymphoma Association have launched their PITS campaign to help us be aware of the symptoms.

Lymphoma is the most common cancer in the under 30s (and the 5th most common cancer in the UK) but despite this, the first time that most people hear of it is when they have been affected by it. And that can be pretty frightening.

That’s where the Lymphoma Association come in. They provide free information and support to anyone affected by lymphoma and thanks to funding from sponsors, they have launched the PITS campaign, where their aim is to raise awareness of the signs and symptoms of lymphoma:

  • Persistent lumps
  • Itching
  • Tiredness
  • Sweating

I didn’t get any of those symptoms, mine was pain on alcohol consumption, but that is an unusual symptom anyway.

As part of the PITS campaign, I was on Central New yesterday talking about my experience. It was quite scary having someone come to film me in my house, and for the hour and a half that she was here, they actually only used a minute and a half! You can watch the video here if you like.

Be lymphoma aware! It could save your life!

Hope

I am natural born worrier. I can’t help it. It’s what I do.

I worry that the cancer will come back. I worry about my mum’s forgetfulness. I worry that we won’t be able to have more children and that Jake will never have a brother or sister.

It would have been so easy for me to give up fighting when I was ill. To say “Enough, I can’t do this anymore”, but I couldn’t. I had to fight, I had to stay around for my little boy. I did. I fought, and I won round one. I fought and I won round two.

It wasn’t easy. It was by far the hardest thing I’ve ever had to do. In fact, I would rather give birth again (with just gas and air I might add!) than have another bone marrow biopsy.

Today, marks the one year anniversary of me finishing chemotherapy. It doesn’t feel like it. It seems to have gone so quickly. Neil came with me that day. I’d made cupcakes for the nurses. I left, and it felt like an anticlimax. I don’t know what I expected,  but it just felt weird.

Now, I hope. It’s all I can do. I hope that the cancer doesn’t come back. I hope my mum’s forgetfulness is just her being scatty. I hope that soon, we can give Jake a brother or sister (preferably sister if that’s doable at all).

So whilst I worry, I also hope, and I don’t think that’s a bad place to be.

When the world says, “Give up,”
Hope whispers, “Try it one more time.”
~Author Unknown