After effects

It’s now three years since I had the face sarcoma, I’m feeling frustrated and low at the moment. Having survived the cancer for the third time, I found myself out of work in August 2014 and I’ve found I either don’t have enough qualifications for posts that I should be able to do or as soon as a perspective employer discovers that I have no teeth doors seem to close for me.

It has been a long wait to have my reconstruction completed and having finally been granted funds for implants and then new teeth on the NHS I discovered that I’m on yet another waiting list that could be anything from six months to a year.

In the mean time I’m lucky if I get some agency work to keep the wolves from the door, along with this I’ve discovered if you work for agency you don’t get much support from unemployment who just want you to sign off if you’re working for an agency.

With the fact I now use a stick to get from A-B but not whilst at work, I just need some support on my leg and ankle but enough that some positions would leave me in pain and my ankle swells up so jobs standing up all day are out.

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A different journey

Cameron Von St James contacted me through my email and asked me to share his story of his wife’s’ cancer journey which I am very happy to do.

My Caregiver Story: Helping My Wife Through Cancer

I will never forget the day that my wife was diagnosed with cancer, malignant pleural mesothelioma. It was just days before Thanksgiving in 2005. We had only been thinking of what we were grateful for at the time. The birth of our first and only child Lily had come only three months earlier. The news was so shocking to my family. How could Heather have this deadly cancer? At a time when we were most happy, everything fell apart.

I instantly became my wife’s caregiver when we heard the news. I was going to be there for her no matter what. Together, we went to the doctor’s office that day, not knowing what was going on with Heather’s health. When the doctor said mesothelioma, my wife froze. She was falling apart beside me and I with her, but I wasn’t going to show anything but love and support for her. The doctor was really clear on one point. Heather was not going to live past 15 months without treatment. He started to talk about different places where we could go to receive treatment, including local hospitals. However, what we really needed a mesothelioma specialist. I said to the doctor that we had to go to see the specialist in Boston named Dr. Sugarbaker, who was known for his work with mesothelioma patients.  I had to believe that this man would be able to save my wife.

That day was the start of chaos. Heather was going to go through an intense surgery and treatment regimen. Mesothelioma takes about 95 percent of the people who have it. Knowing that, I faced each day as strong as I could be but often felt overwhelmed by what was happening to my family and to myself. I couldn’t take care of everything like I wanted to. I was working, helping Heather and taking care of a newborn. The stress compounded on some days with the doubts, and I found myself on the kitchen floor, sobbing. I had nightmares of what life could be like without Heather. I saw us spending all we had to save her and still losing her. However, I could never show these fears to Heather or anyone really. I had to be a rock for my family.

Help came when we needed it the most. Family, friends and even people we had never met heard of Heather’s story and wanted to do something. They gave in so many ways, both big and small, and we appreciated every offer of help we received. Heather’s parents were especially helpful. They helped us with childcare for Lily while Heather had her surgery, and even chipped in to help us pay our expensive medical bills. I don’t think that I ever could thank these people enough for what they did for my family. That was another huge lesson that I had to learn. You should always accept help when facing a crisis. In the beginning, I was reluctant to accept these offers of help, especially financial help.  However, I had to learn that there is simply no room for pride in a battle with cancer.  Every offer of help can lift a huge weight of your shoulders, and at the very least will remind you that you aren’t alone.

My family’s journey has proven that you can make it through dark days. Today, Heather is cancer free. She beat mesothelioma after undergoing months of surgery, chemotherapy and radiation treatments. I’ll always remember what it felt like to overcome this challenge with her. That’s what has made my family so strong all of these years, and it’s what will continue to make us strong enough to face other challenges.  Now, we hope that by sharing our story we can help inspire others in their own battles today.  Never give up hope, and never stop fighting for the ones you love.

Thanks again Cameron for sharing this with me and allowing me to publish this on my blog.

The roads straightens again

This past week I finally returned to work after being off for the last eighteen months. I thought I would be changing my career but fate decreed otherwise so I’m back working with children. I didn’t realise how much I’ve missed the kids. Only one child commented on my speech but that wasn’t until Thursday by then I found it easy just to say I’d been ill but was now on the road to recovery. I thought it would be difficult as my cancer was in my mouth but the children accepted me as I am still with no teeth.

I think it will be another year before I have teeth again and felt I couldn’t stay off work that long it was starting to drive me a little nuts not to mention lonely being at home on my own all the time. It was time to get back out and face the world again.

So my journey continues on but going a little straighter now. I didn’t even have to go through an interview the part of the process I always dread.

I attended a back to work job-club with McMillan up in London on Friday which has helped this is the first one they have run I would strongly recommend it to anyone if you get the chance.

My new job is only a short term job so will be looking out for another position in May.

Before and After

2013-02-12

The picture on the left was taken in 2008 after my first cancer treatment and whilst still married to my ex-husband. The picture on the right was taken last week. Admittedly I have been aware of what I eat since this last bout of cancer.

Since the first picture I’ve lost 8cm off my hips and 7cm from my waist. This has probably been made easier by the fact a lot of foods that are not good for you I can’t eat anyway. I do now consciously watch what I eat and exercise on a stationary bile and use a pro swinger.

I’m quite proud of the new me.

 

Marvellous group of people.

Yesterday I went to the hospital where my treatment is taking place. There I attended a head and neck cancer patient group. This has never been done before. It came about because when I had one of my stays in the hospital I helped another lady who was very distressed after her reconstruction operation and the hospital realised that there was a gap in the services that they offered.

There were around seven of us all with sarcoma but different types plus a few support partners. During the course of the afternoon which was very emotional for some we discovered that although we had different types of sarcoma’s there were also similarities between us and our treatment.

There were some amazing stories of different journeys some finished and some like mine still ongoing.

I also found out about an organization called changing faces which I will blog more about when I’ve looked into it in more detail.

I wish to thank you all for sharing your journeys with me and listening to mine. Thanks also go to the McMillan support centre for hosting the meeting and listening to our views on how future patients maybe helped and supported,

Head and neck cancer is such a difficult journey as everything is out there for others to see, we have all had our dark periods and come out the other side. Now we have to learn how to live life after the cancer and move on to a new stage in our lives.

Hoping to hear from you all in the future.

 

Ten Things

I got this idea from a friend on Facebook but I’ve added what I’d like to do in 2013, Thank you for the idea, my friend.

Ten things I did in 2012:

  1. Passed Word Specialist 2007.
  2. Passed Excel Specialist 2007.
  3. Passed PowerPoint Specialist 2007.
  4. Created a blog.
  5. Passed Better Blogging with CTJT, with a Merit.
  6. Watched my daughter leave home.
  7. Was finally discharged from Breast Clinic.
  8. Finished Chemotherapy for the second time.
  9. Had tumour in mouth removed, plus five other operations.
  10. Survived CANCER again.

Ten Things I’d like to do in 3013:

  1. Make new Friends.
  2. Support others.
  3. Complete Teaching Assistant NVQ3.
  4. Complete and pass Proof Editing Course.
  5. Get a new job.
  6. Have a good relationship with my daughter.
  7. Pay off some debts.
  8. Have my mouth reconstruction finished, and have a full set of teeth implanted.
  9. Eat a meal without worrying if I can eat what’s on the menu.
  10. Survive Cancer another year.

What would you put on your list?

 

 

My favourite things

With Christmas just round the corner I was thinking about what my favourite things about Christmas. For me Christmas dinner is what makes Christmas for me is sitting down to dinner at the table. With all our rushing around these days Christmas dinner is the one meal that everyone can sit down together as a family.

With my children now grown up and have their own lives my Christmas dinner this year has already happened and with me not being able to eat everything, but this didn’t spoil our family Christmas dinner.

What makes Christmas special for you?

I’ve just had operation number six for this year, and made it home for Christmas thanks to all the staff at University College Hospital, London, UK.

My mouth is very tender and sore.

Wishing you all a very Merry Christmas!