The hot trot plot

A quick update before I move on to the real purpose of this post. I’m now coming towards the end of my 2nd cycle of Capecitabine and I must admit, I’m managing it better than I had anticipated. I mean, …

The bad news

Since my first diagnosis, I’ve had to both receive and share a lot of bad news. I’m honestly not sure which one is worse. Seeing the look of fear, sadness and shock on the faces of people you love as you tell them life altering news is soul destroying.

A few weeks ago I had to report more bad news.

The lesion on my liver has grown from 1.7cm to 5cm in the past 16 weeks. This means my treatment has stopped working. It means I need to start chemo again.

At that time, my oncologist told me I’d be starting chemo immediately as the tumour in my liver is growing extremely fast. At the Multi Disciplinary Meeting, it was suggested that a liver biopsy be done to find out if my cancer type has changed at all (which may explain the speed of the growth). However, after my scans had been viewed by various liver specialists, it was decided to be too risky a surgery as the tumour is very deep and extremely close to a blood vessel. The risk of internal bleeding was too high.
We spoke about a few different types of chemotherapy options open to me and have settled on a pill form called Capecitabine. The benefits of this is no weekly cannulas and, hopefully, very minimal hair loss. However, it is still chemo and will have a list of side effects as long as my arm. This is a link to MacMillan’s info sheet if you’d like to find any info: https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/individual-drugs/capecitabine.html

As usual, none of my appointments are plain sailing. After waiting weeks for the liver biopsy decision to be made, I was assured that my 1st chemo, along with my bone strengthening injection would be yesterday. I just had to sit by my phone and a nurse would call me with my appointment time. Well, I waited until 10am before my anxiety got the better of me and I called the hospital and asked to talk to a chemo nurse. When I was put through and told them my name, the incredibly hostile nurse told my appointment had been on Tuesday and I’d missed it. *sigh*…..
On the Tuesday I’d actually been in a separate hospital having an ECG, having pre chemo bloods taken and signing all the consent forms for this new type of treatment. I explained this to her and was told in no uncertain terms that she ‘couldn’t’ (wouldn’t?) help me. Whatever happened to a bit of sympathy and general human kindness?
So, my next step was to phone the Queen Margaret and try to track down my oncologist. Eventually I managed to speak to her secretary who also ‘couldn’t’ help me. Her reason? She was finishing at 12pm (it was only around 10:30am at this point). As if I’d be placated by that excuse, she began to say goodbye but I refused to be fobbed off. I reminded her that, as with most of her boss’s patients, I have cancer. I’ve been waiting nearly 3 weeks to begin treatment and I will not allow myself to be forgotten by those whose job it is to ensure I get the treatment and care I deserve.
She seemed a little shocked at this which is dreadful. Everyone deserves to be listened to and cared for, particularly where your health is concerned. She offered to email my oncologist for me to try to find out what was happening. I told her I’d leave it in her capable hands to do whatever was necessary to ensure my message reached her. Today.
Luckily, stomping my feet worked and within an hour, the chemo ward called me back, apologised for the ‘confusion’ and arranged my appointment for tomorrow (well, today now since I’m writing this at 2:30am).

So, if you can, send a wee positive thought our way at 2pm. I’m really nervous and anxious about going through this again, but most of all, I pray that it works! Please extend those good vibes towards Steph too. It’s easy to forget the husband/wives of the patients but they go through every emotion and more. Steph deals with so much and I’m actually starting to suspect that he’s a real life super hero. Who else could go through all of this but still make me smile and laugh every day?! (Particular when he performs his made up on the spot silly songs and dances). I couldn’t do this without him by my side.

During the time between being told the news about my liver and now, I’ve managed to catch up with a lot of my family. My Dad flew over almost immediately to offer his support and, coincidentally, my cousin and his family were over visiting from Australia. It was a very welcome distraction from the anxiety I was feeling a really lovely to spend time with everyone.

Charlie Jr, William, Duncan (my Dad) and his brother Charlie Sr

The McLauchlan’s out for tapas

Dog walkies (in between days of fatigue) with Dad and Steph

The McLauchlan’s at my aunt and uncle’s house

We all went for a curry and the ‘young ones’ went out to sample the delights of Dunfermline….

During all of this time, our poor dog Dexter had become mega overdue for a haircut. He finally got done today and looks like a new (half the size) dog. The groomed went a little bit overboard grooming Obi and now he looks a bit poodle-esque. Oh well, he’s still cuter than cute!

Curly wurly, dense haired Dexter

Trying out the new ‘skinhead’ style 😂

And lastly, I want to give a little mention to one of my very best friends, Jodi. Jodi has had a really tough time lately. That’s actually a huge understatement. However, she has been bloody brilliant to me. She came with me the day I got my recent bad news. She was strong, composed and made sure she understood everything the oncologist told her so I didn’t have to. She also never let go of my hand. I feel very lucky to have her in my life! Jodi, this blog is dedicated to you.

Jodi knows to feed me cake when I’m sad!

The Catch Up

Again, I have neglected my blogging commitments. I am an unfit blogger. If my blog was a plant, it would be a sad, wilted, dried up husk of a thing (Much like my actual plants). If my blog was my …

The bad, the good and the ridiculously cute

As usual, it’s been way too long. Please forgive me! After the huge fundraising campaign to help us install a new bedroom with ensuite in an unused downstairs room in our house (huge thank you to everyone who helped, we are thrilled with it and it makes life so much easier!), I became very ill with, what I though was a bad chest infection. After a few days my symptoms were increasing and I couldn’t swallow without intense pain in my oesophagus. I was admitted into hospital and was told I had the flu. As my immune system is still very poor, they kept me in for 3 days to do tests and give me an industrial dose of tamiflu and antibiotics. I really wasn’t any better when they sent me home but my hatred of hospitals persuaded me that I’d recover better at home so off I went. The next night was the fundraising finale, a Ceilidh that my friends and I had organised (particular thanks go to Pauline, she did so so much work for that night. She is a wonderful friend). I was so ill, I spent the day torturing myself about whether or not I should go. At about 9pm, I dragged myself along so I could, at least, see the place and say hello to all the people who came along to support me. I lasted an entire 20 minutes before the hot flushes began and the crippling pain in my throat and chest returned. Not sure if I was going to faint, throw up or some combination of both, I had Glenda take me home.

By this point I hadn’t been able to eat anything for well over a week and I was now completely unable to take any of my vital medication or drink fluids as every swallow set my oesophagus into horrifically painful spasms.

The next morning I was admitted into hospital again and hooked up to so many tubes and machines, I had lost count. I was taken to the infectious diseases ward as they still had no definitive diagnosis. The main concern at that point was getting my rehydrated and trying to find alternatives to the pills I usually take that would do the same job. They either had to go through my IV or be injected. I was so weak and so down by that time, I took anything they would give me with no question. After I’d been in for 3 or 4 days, I was taken down for a gastroscopy to find the route of the problem. Straight away they could see how badly damaged my oesophagus was and it looked as though it had been caused by a bacterial infection called gastritis. Its very rare to have bacterial gastritis and in this area, so they really didn’t know what they were looking for until they found it. After that, I slowly began to get better but it took at l east another week to be able to drink without pain and another 3 weeks before I could swallow pills or food. I had to wear a syringe driver which would pump medication into me through a little needle under my skin 24 hours a day. It was very uncomfortable but it was the only way I was able to get out of the hospital so I was happy to take it! This all began at the end of June and I still don’t fully have my appetite back.

I think the worst part about this is that it wasn’t cancer related at all so I can’t blame it on that. It was ‘just one of these things’. Another one? For me? They shouldn’t have! I was meant to return to work in July and that had to be delayed. I had been really looking forward to that so this knock back hit me hard. Life really deals you some crappy hands sometimes doesn’t it!

So, that was the Bad!

The Good is that since then I have gone back to work. This time last year, I didn’t imagine I’d ever be strong or well enough to do that. In fact, I highly doubted I’d still be around never mind being able to work. Don’t get me wrong. I’m still not well. I never will be. But, I can do my best to get out there and claim my space back in the world. My work is really satisfying, social and fun. I missed it a lot. The downside of my job is that it can be very physical and fast paced and I knew this was going to be very challenging. I remember how tiring it was after I first started and I was way healthier and fitter than I am now. The thing I’ve learned, and am still working on is to listen to your body. If it tells you not to do something, its for a reason. listen. That approach is helping me get through. I know I can do up to 4 hours of work but I then need to take it easy for the rest of the day. If I work, then go shopping, then come home and clean the house etc, the next day I will be in too much pain and fatigue to move and my entire day will be written off and there’s no point in that. I still struggle with feelings of being too lazy and beating myself up for the things I should have done/be doing. I’m definitely my own worst enemy sometimes!

That brings me to The ridiculously Cute. Look away now if you are feeling a bit doggy broody…

 

His name is Obi and he joined our family about a month ago. He had a bit of a rough start in life but is more than making up for it now. He is a joy to be around and is already picking up some basic commands and doing very well with toilet training. He can be a lot of hard work but he is very very worth it!

The big ask update

An update on our fundraising campaign

The Big Ask

This is the link to my Just Giving page. Thanks you so much for all of your support.

https://www.justgiving.com/crowdfunding/deanna-wilson?utm_id=1&utm_term=DGDaJGzRE

The rainbow after the rain

I can’t believe my last post was so long ago. Sorry! Well, I’ll get the rubbish news out the way first. The lesion on my liver is definitely cancer. Fuck.  The multidisciplinary team meeting agreed that this was the case …

The January 2017 results

I had my latest CT scans done 2 weeks ago. Today I got the results.

The LD flap flop

I’d like to dedicate this post to my Gran, who passed away in December. I have a lifetime of beautiful memories with her and I consider myself extremely lucky to come from a line of strong, intelligent and generous women. We all share many traits and, apart from the forgetfulness, I’m thankful for them all. I hope she is at peace and reunited with my Grandad. 

My Grandparents. Weren’t they a gorgeous couple?!

If you’ve been following my progress from the beginning, you may remember that I’ve had terrible luck trying to have my left breast (the original offender) reconstructed. I lost my first couple of implants during chemo due to infection. They then tried to use an expander implant. This is designed to be filled slowly with saline which keeps the skin stretched and prepares it for an implant to eventually be inserted. 

The least ‘graphic’ image I could find of an expander

Unfortunately this didn’t work out for me as I’d had so much infected skin cut away during previous surgery coupled with radiotherapy damage (a build up of scar tissue and loss of ‘elasticity’). This left very few options for me, all of which were invasive and painful and I needed time to recover. I was given a soft prosthesis (think boob shaped cushion and you’re not too far off the mark) to wear until I was well enough to try one of them. I don’t think anyone would ever have imagined just how long that would take. 

In April of last year I found out that my breast cancer had spread into my spine, right hip and leg. This put my reconstruction plans on the back burner as I need to start treatment and have surgery to put a gamma nail in my femur to prevent further damage. I struggled to do simple things like; get in and out of a car, my bed and the bath, walking up and down stairs and kneeling/crouching. I had to have extra bannisters, grab rails and other additions fitted to help me around around the house. I needed to ‘learn’ how to walk again and depended on crutches even to walk a few feet.  Life was (and sometimes still is) very hard. The worst part of it all was the pain. I had to work with the pain management, palliative care and physiotherapy teams for months to help me get it under control. I’m now taking 600mg of oxycontin a day combined with a cocktail of gabapentin, diclofenac and, paracetamol and monthly bone strengthening injections. There are times when even this doesn’t help and I need a 60mg ‘breakthrough’ of fast acting oxycodone. This has been my saviour and is the only way I have of living anything resembling a normal life. 

That was all I wanted. Normality. I’d been using the prosthesis for over two years and I despised it. It was uncomfortable, it didn’t look or feel natural and it reminded me every day of everything I’d come through. I was prepared to go through whatever it took for one more shot at having a reconstruction operation. I knew there was going to be pain but, I knew I could cope with pain. I actually can’t really remember what it’s like living without it. 

So, on December 5th, I went into hospital and had a Lattisimus Dorsi  (LD) flap reconstruction. You can read more about it here: http://www.macmillan.org.uk/information-and-support/treating/surgery/types-of-breast-reconstruction/using-tissue-from-your-back.html

In hospital feeling nervous but excited to close this chapter of my life

For the first few weeks everything seemed to go really well. My pain was really well managed, I was able to get up and around without too many problems. The swelling was beginning to go down and I could see what the finished result was going to look like and I was thrilled. Around the 20th of December I started to feel a bit under the weather. This gradually progressed over the next week but I just assumed it was a sickness bug as there were no external signs of infection. However, a few days later, I noticed my surgical wound started to get a bit red. By the 29th, it had become hot and sore and I felt terrible. I called my lovely district nurse who rushed along to see me. I knew by the look on her face I should be worried. A few phone calls later and I was packing my ‘Oh Shit’ bag and I was on my way to the Western General in Edinburgh (my local hospital ward was closing down for the new year holiday).

I was admitted and given a side room on the cancer ward. It was apparent that this infection was very bad and I needed immediate treatment. Between my back and my new reconstruction, they removed almost 400mls of infected fluid then set me up with course after course of IV antibiotics and fluids. By early evening on the 31st the surgeon visited me and broke the dreadful news that the antibiotics hadn’t worked and I was first on the next morning’s list for emergency surgery. 

New year’s eve is my husband’s birthday and it was devastating not being able to spend the evening with him. I made him promise me that he would go out and have fun but he didn’t want to go anywhere without me. We compromised by getting a few people (including one our best friends, my mum and step dad) to go to our house and have some drinks, play some games and basically try to take their minds off of what was going on. It’s times like this that remind how difficult all of this is for them.  

I was so ill going in for this operation, I didn’t have much time to worry about it. That happened after I woke up. There were some complications removing the intubation tubes from my throat. This  made my stats drop very suddenly and I had to spend the next 24 hours in the high dependency unit, in a tangle of monitors, wires and cannulas that wouldn’t let me move. I was in a ward with 2 other people who were seriously ill. The woman next to me didn’t wake up during my entire stay. I was only reassured that she was still alive by the sounds of her occasional laboured breathing and the constant beeping of her monitor which was out of sync with my own. The woman across from me threw up more than I knew was physically possible! I was frightened for us all and tried to cry as quietly as I could in a bid to be left alone long enough to try to fall asleep. All of my belongings were in my room on the cancer ward so I had nothing to keep my mind off the situation I was in. I felt like I’d gone through so much for absolutely nothing. I was so angry at myself. I’d chosen to go through the previous surgery therefore I must have been to blame for the outcome. It’s still taking me a while to try to stop thinking that way. 

Flushed and feeling rotten but I need a photo for my blog! 

I was allowed to go home on January 4th and felt such a mixture of emotions. On one hand, I was delighted to be back to my husband and close to my family. On the other, I was so sad to have missed out on all the festivities and I just couldn’t move past the trauma of what had just happened to me. 

Now, more than 2 weeks have passed. I feel a lot better physically and I’ve had a new (much more realistic and comfortable) prosthesis fitted. Steph and I have made a new year’s resolution to do at least one nice thing every month. Hopefully that will help with the psychological aspect. 

I’ve also resolved to update my blog a lot more and to include you in the fun parts of my life, of which I intend there to be many! 

Thanks for making it through this blog, it’s been a hard one to write, I hope it’s been worth it to read. I’ll leave you all with my very belated wishes for a very happy, healthy New Year. 

Fill it with nice things! 

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The Wedding

Hooray! We got married! This post is dedicated to the love of my life, my best friend, my husband, Steph.  Steph and I have never really liked the idea of a traditional church and hotel reception style of wedding. Mostly …