Let's all ride the pirate ship

When I was younger, despite being the most travel sick kid in Britain (FACT: I have even vomited on the bus that takes you from the airport terminal on a two minute journey to the plane) I used to love theme parks. One of my particular favourites was the pirate ship as featured below. I'm far too old and far too health and safety conscious these days to enjoy the thrill of lurching from dizzying heights to plunging lows in a matter of seconds. Or so I thought...

Since my recent scare (click here to read Dad's blog if you missed it) I seem to have been emulating the pirate ship in emotional highs and lows for several weeks now. My poor husband and Dad have been the victims of this emotional piracy and it's getting rather tiresome. So I turned to my trusty friend Google, to see if this is 'normal'. Thank goodness. It is. Normal for a cancer 'survivor' anyway.

So for those of you who are wondering whether you're on your own emotional pirate ship, then here are my tips:

1. Be kind to yourself. No-one's expecting you to bounce back immediately. And it's not a linear process. Be patient. (Not my greatest attribute but I give it a go).
2. Do the things you love with the people you love.
3. Pray. God loves you and carries you through. I know my Dad is amazing but God the father is incredible.
4. Acknowledge how you feel. Fear, grief and loss are completely normal emotions. Express them don't suppress them.
5. Speak to other people who are in the same boat (or pirate ship). Support groups help in normalising difficult emotions.
6. Don't be afraid of recurrence. This is really hard, but if you can swap fear with faith then this will help.
7. Stay fit and healthy. I embarrassed myself completely this week by flailing around at a trampolining fitness class. It's impossible to be soul searching when you are concentrating on staying upright.
8. Avoid stress. I'm terrible at this but it can be helpful to avoid stressful situations. If you think you need additional support, your local hospice or the GP will offer a range of different types of help.
9. Get used to the new you. You are different now. The long-term after-effects of cancer might be physical such as a scar, or hair that's grown back with a mind of its own. Or it might be a new outlook that makes you feel isolated from those who haven't experienced what you have. Tell your friends and family how you're feeling. That's what friends are for.
10. Go to all your appointments. Don't be scared of bad news. With cancer, then you need to act fast if you notice any changes. A stitch in time and all that.

Above all, take support from every angle. For me it's my family, friends and church community. The violent swings of the pirate ship are no match for love, faith and peace.

Amanda

My emotions right now

Mission: Remission

December 30th 2016 marked 3 years since my breast cancer diagnosis. January 28th 2017 marked 3 years since I had an operation to save my life, left sided mastectomy and Strattice reconstruction. 

Anybody who has had a breast cancer diagnosis (or any other) will understand the anxiety that surrounds every follow up appointment. Whilst we want/need the appointments with our consultants/surgeons as we crave the reassurance that we're doing well, the fear of recurrence is always with us. 

I had my follow up yearly mammogram and ultrasound last week. I don't talk about these ahead of time because I don't feel the need to, but even if I don't talk about it, it doesn't mean I am not thinking about it. You can bet I was thinking about it from the moment the hospital letter dropped through my door.

In fact, I was thinking about it in January as I knew it was almost 'that time'.

Anyone who has gone through a cancer diagnosis can easily convince themselves it's back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am happy to report that as far as the radiologist could see, my mammogram was clear. The ultrasound showed cysts that I've always had but nothing sinister to be seen.
The radiographer who performed the ultrasound recognised me as I did her, she was in fact the same lady who spotted that 'something she wasn't sure of' after I went up to have cysts drained 3 years ago and the rest is history. 

Looking forward to another year of happiness, good health and making precious memories with those that mean the most.

Debbie

A challenging couple of weeks - guest blog from Amanda's Dad

It seems quite a long time since I did an article for Amanda and Deb’s Breast Cancer Tips so here goes... 

Amanda seemed to be going along very well following her miraculous change from ‘terminal’ medical status to ‘secondary’; ‘terminal’ is a frightening category to be in. We’d got through Christmas, our first without Amanda’s mother, and another without Amanda’s sister Stephanie - definitely not easy. However, a few weeks ago we attended a night match at the football and Amanda had to stop and rest due to sharp pain in her chest. I was obviously extremely concerned. She said that she’d being experiencing these pains almost daily but it was nothing to worry about. I tried to put the occurrence to the back of my mind, but it was constantly there however hard I tried to block it out.

Amanda and Dean then went away to Spain for a few weeks' holiday and we 'Facetimed' most days. Every time I tentatively enquired about how she was feeling, and if the chest pain was still there, she said that she was fine. She mustn’t have been fine because she had made an appointment with her GP on her return from holiday. The GP said that an immediate X-ray was necessary, and the X-ray highlighted a ‘cluster’ on her lungs – we all were devastated and feared the worst. Amanda in particular was very concerned and we decided to 'go private' to get a lung scan done and a diagnosis from a specialist to speed up the process. A routine brain scan was also scheduled for around the same time as the lung scan, thus heightening the worry. 

We then had to see two consultants on consecutive days for results. We were expecting the worst but miraculously both the brain scan and lung scan came through as cancer free! The chest pain had been caused by the extreme radiotherapy that Amanda had received during her breast cancer treatment, and the ‘cluster’ was the result of a viral lung infection. A lot of people had been praying for Amanda, she’s incredibly popular, and the support that we had as a family was absolutely immense. 

I guess that it is only natural to worry about every pain that Amanda has after having three cancers in three years, but this was tortuous. I feel that God definitely has a purpose for Amanda as even the oncologist was surprised (in a very nice way) that she is still with us after facing such an aggressive strain of cancer.  I hope and pray with all my heart that we have now turned the corner and that Amanda can go on to lead a normal healthy life. The signs seem unexpectedly good (we don’t like using the word ‘positive’), and my biggest prayer is for Amanda to outlive me. 

The message is to never to give up hope, even when the future can look incredibly daunting. Concentrated prayer can be so powerful, and the support of family, friends, neighbours and work colleagues makes the world of difference; it really has to me. 

I sincerely hope that this blog can be of some help and encouragement to someone living with similar anxiety.

Amanda’s Dad

Guest blog from Jayne

Hundreds of wonderful fun filled days have passed since I wrote for Amanda and Deb's blog on the 30th June last year. 

Just to recap, my breast cancer had spread to both of my lungs, the spread was classed as 'extensive' and I was given 3-6 months to live. The only option in the UK was chemotherapy to extend my life by a few months. We sold our house and bought a smaller one to release some money to buy a motor home, pay for private treatment and do some travelling.

I'll pick up after the last installment......
After we finished the housesit in Italy it was difficult to say goodbye to the dogs we had got to know and love over the past six weeks. We explored some more of the 'heel of Italy', a Tuk Tuk ride around Gallipoli being the highlight and then got the ferry over to the Greek islands where we spent seven glorious weeks exploring the beautiful green islands of Kefalonia and Ithaca. We saw baby turtles hatch and make their way to the sea, went horse riding, sailing and jumped off a mountain to paraglide down onto Myrtos Beach.

From Kefalonia we got a ferry back to the Greek mainland and visited Monamvasia, the ancient city of Epidavros, Navpleon, Athens and the Acropolis. Then a ferry over to Crete where we did some volunteer work at the 'walk with donkeys' sanctuary. I find it very therapeutic being around animals and to be able to help people who dedicate their whole life to helping abandoned animals felt really good and am sure played a big part in my healing process.

We caught up with old friends on the island and helped the locals harvest their oranges and lemons.

Then it was back to the Greek mainland to spend Christmas and New Year in the scenic mountain ski resort of Kalavrita doing a month long housesit for three adorable dogs and an affectionate cat. Our whole journey was interspersed with visits from family and friends and it made it all more wonderful to share our new experiences with people we love.

Throughout all this my cancer tumour markers (monitored by blood tests every six weeks) had continued to fall until the last test in December when one marker was a little raised. We had always planned to get the ferry back from the Greek mainland to Venice in January so considering the close proximity of Venice to the clinic in Germany (only five hours drive) and after a discussion with my doctor there we decided to book in for a week's top-up of immune boosting treatments and investigate the reason for the raised cancer marker.
Following scans the bad news was that the cancer had now spread to my bones, but the AMAZING news is that my lungs (where I had in excess of 18 tumours, the largest one being 48 x 32mm) are clear and cancer free! The doctor said I was fit to fly so we put the motorhome in storage and flew out to my favourite island of Fuerteventura. 

I loved driving around in our 'home on wheels'. It's exciting finding new places but I was feeling a little tired and just wanted some rest and relaxation and to put down roots in the sunshine for a while. The importance of vitamin D in cancer treatment can not be underestimated! At the end of this month some of my family and friends are flying over to help us celebrate my 50th birthday (which at one point, I thought I'd never see!) which will just be the icing on the cake.

So the outcome is that we have to come home a little earlier than planned to start some radiotherapy treatment for my bones but we have had a totally awesome, amazing journey. 

A favourite saying of mine...
Life is not about the amount of breaths you take,
It's the moments that take your breath away.

Live, laugh, love

Jayne

Update from Dean

**Wife update** (It's been a while)

First off, really sorry for the length of this post. As many of you know, I much prefer posting stupid photos from the internet and posts of few words to avoid the ridicule of being picked up on making silly typos by the wife. However, there is a good reason for typing out this epic tale.

A few weeks ago, Amanda McDonald experienced some brief but sharp stitch-like chest pains while she was enjoying her continued relationship with life. These lasted a few seconds but caused enough discomfort to bring them up in conversation. Whilst they weren't an immediate cause for concern, we did agree it was something to get checked out. We arranged to see a GP on Friday 27th January and while Amanda's oxygen levels were ok, the GP was of the opinion, given Amanda's rather chequered recent medical history, to report for a chest x-ray and blood tests at the earliest opportunity.

On the morning Monday 30th January, we left home and within the space of 80 minutes, had attended both for blood tests and for a chest x-ray via the NHS walk-in services. Bearing in mind the well-documented pressures the NHS are facing, the fact that Amanda could have both tests carried out at two different locations 3 miles apart within such a short period of time was incredible. We do have so much to appreciate in this country. Amanda also had her planned MRI scan on her brain take place the very same day.

Just after 5pm on Monday 30th January, and just 20 minutes after posting her incredible Facebook post (read it here: https://goo.gl/WpgvUK) Amanda's GP called to say that they'd found a cluster mass on her chest x-ray. The GP would arrange for a more detailed scan as quickly as possible but given Amanda's medical history, it was a cause for concern. We found out the next day that even for an urgent scan, we were facing the prospect of a 3-week delay for this to take place on the NHS. Thrown into the vacuum of uncertainty, Amanda couldn't face any delays and with assistance from the team at her medical practice, arranged for a referral to our local Nuffield Health private hospital.
At 8.50am on Thursday 2nd February, Amanda had a CT scan of her thorax. A date was set for a follow-up appointment on Tuesday 7th February.

On Monday 6th February, we were invited back to see the neurologist who performed both operations to remove the lesions to Amanda's brain back in 2015 and although thrilled that she told us there was no change from Amanda's previous MRI back in the summer of 2016, we were fighting the overriding sense of impending dread that we've experienced many times over the past three years as we really needed to know the outcome of the CT scan to her thorax. Amanda's not the most patient, and with what both our families have gone through in the past three years (with both our mothers passing away combined with the significant health issues that Amanda has found herself battling with), the wait for the outcome has been excruciatingly unbearable.

We met with Professor Brunt, our Consultant Clinical Oncologist who had looked after Amanda during her initial treatment for her breast cancer, at 3pm this afternoon. He got straight to the point - the results from the scan were fine. What had happened is that the mass found on the x-ray was likely to be an infection that Amanda had picked up earlier in January which hadn't fully cleared. As for her chest pains, he carried out an examination and the trigger points for the pain where Amanda was feeling discomfort was the cartilage in her breast which received the exposure to the radiotherapy that she had following her treatment for breast cancer back in July 2014. A natural thing to happen.

What this Facebook post doesn't convey half as much as I would have liked is the challenges and mental trauma the uncertainty of the last 11 days have had on us all - Alan, Amanda and myself. It's been horrific. We'd convinced ourselves that 'this is it'. Why? Well, look at the evidence. Having been told in October 2015 that there was nothing further that could be done for Amanda in terms of treatment for her various cancers, and plummeting to the depths of facing up to the realisation that you're living under the cloud of a life-limiting disease then making a miraculous recovery against all the medical evidence presented, we always knew that something would turn up just around the corner - we live for now, there's little point in planning too far ahead. Ironically, these past few months is the closest we've been in the last few years to living normally - normal everyday lives without worrying about what's ahead - until 11 days ago. There's only a precious few who have been in this position who will fully understand what I mean by the above. It's time to look forward and appreciate everything we have again.

So to summarise. Take the last 11 days out of the equation and things are actually looking as good as they have been for a long, long time for Amanda. Our neurologist next plans to see us in 6 months time for a routine scan.

As Amanda's dad says, "We're still standing". Or star jumping, as Amanda enjoys doing so much these days.

Thanks for reading.

(Post available to read on Facebook here)