Monthly Archives: May 2014

Sometimes it feels like we’re living our very own version of groundhog day, but instead of re-living one day over and over (and trying to get it perfect), we’ve got our very own 3 week loop that we have to get right. After every session we have to take note of how Sam suffers and then make sure we get the medicine to counteract the nastiness so we can get it perfect the next time. The first session of docetaxel completely knocked Sam for six. It took her a good 4 or 5 days for her to find her feet but once those days were out of the way she recovered quite well. I mean, don’t get me wrong, she wasn’t completely fine but she was a lot better than she was in the first week. One of the new side effects that she developed this time was thrush (upstairs and downstairs) and it drove her crazy. She’s never had it before so it really caught her off guard. Everything had picked up by the final 3rd week and Sam had got all her energy back, her skin had cleared and she was infection free (much to her relief).

We had our pre chemo appointment last Wednesday and it turns out the change of oncologist (from the last time) wasn’t a one off. When Sam missed that week of chemotherapy because her blood count was too low, it looks like we also fell out of sync with our original oncologist. Now usually this wouldn’t matter because I suppose they’re all part of the same team, but the change in tone is rather jarring. You see, our original oncologist was a young lady (25-35) who had a clear direction that she wanted to go in. When we would go in for our pre chemo appointments she would be “Right, we’re going to do this, then this and you should end up with this”. When they found a trace of cancer in one of the lymph nodes, she was the one who insisted that Sam have the CT scan to see if anything was going on anywhere else. She said that she liked to know what she’s dealing with so she can make informed decisions from the very start. Our new consultant, however, is an older man (50-60) who, if he was any more laid back, would be asleep. Don’t get me wrong, he’s a really nice guy and he has that George Clooney vibe about him (I’ve made this assumption from the giggles you get from the nurses when you mention his name) but once you’ve got used to one style, it can be hard to adjust so quickly to another (especially when it’s something important like this is). When we walked into his room on Wednesday he welcomed us, sat us down and asked Sam how she was doing (in the calmest most soothing laid back voice ever). Sam explained the symptoms that she’d experienced since the first docetaxel and he sat and wrote prescriptions for each side effect. He extended the amount of steroids that she would take after each session so they would keep her afloat (energy wise) for longer, some anti depression tablets for her joint pain (??) and some tablets to stop the onslaught of thrush. He then sat, stared at his screen, then turned to Sam and asked

“So, is the chemo working?”

“Umm, you tell us doc, you’re the one in charge ”

“I mean is the lump shrinking?”

“Really??”

Sam asked if she would have another MRI after the final chemo to check the progress of the lump and he sat, stared into his screen, smiled, tilted his head and said calmly “Well I’m sure we can book one of those for you”. He was so laid back I didn’t know whether he was winding us up or just had a big lunch before the meeting. The other weird thing was that we’ve always had a cancer nurse with us in every meeting that we’ve had (part of the process apparently) but this time there wasn’t one. (Was it something we said??)

The second docetaxel session went ahead as usual on Thursday without a hitch and so far the extended steroids and anti depression tablets (??) are doing their jobs well. Sam hasn’t been as grounded as she was last time but she’s still all over the place (as far as energy levels and aches and pains go). I think it’s just a case of getting through this first week and then hopefully she’ll start to pick up again next week in time for her FINAL CHEMO SESSION on the 12th June!!! 🙂

I wrote this post 5 days ago, but I’ve been sat on it trying to decide whether to post it or not. I’ve decided to post it because I want people to know that even though you can have the worst, most horrendous experience that you can imagine happen to you, there is always a time where things will start to get better. I always wanted this blog to be about honesty and I said way back when I started it that I wanted to share every step with you. This is one of those steps. It just happens to be running parallel with the other “experience” that we’re currently dealing with.

It’s crazy how one single event can change everything you know in the blink of an eye. Thought processes and everyday routines are changed forever. If you actually take a step back and take your time to think about it then you could actually drive yourself insane. The only way to get around it is to keep your mind moving and not stopping to actually think about the details. Of course, what happened is nothing new in life and it’s nothing that hasn’t affected millions of families before us. It had just never happened to our family…….. until now.

It’s Saturday 11th May 2013 @ 0710 and we’re awoken by the telephone ringing. There’s only going to be one of two people calling us that early in the morning and it’ll either be mine or Sam’s mum. I suspect it’s my mum as we had a slight disagreement the evening before and she’ll either be calling to apologise or to give me 2 barrels.

You see, my mum is like our Peggy Mitchell. She’s the head honcho, the numerous uno, the big cheese. If I’m honest with you, I think every action we do in our lives (myself and my brother) is probably influenced by my mum in one way or another. It’s not because we’re mothered or anything like that, it’s just purely because she is the head of our family. She’s 64 years old, Iranian and just over 5ft, but don’t let the small size fool you. She’s like a pitbull when she wants to be and she would kick our butts if we ever stepped out of line (no matter how old we are). I used to call her my little brown magical munchkin when I was at school because, to the astonishment of my friends, she could magic anything out of anywhere. If we needed trainers, they were there, money for going out, there you go. If our friends came over to the house, then dinner would be made for them and they would be looked after as if it was their own home.

Sam answers the phone downstairs and I can hear her talking to someone. She walks into the bedroom with the phone in her hand. “It’s your dad and he just keeps saying your mum’s gone and I don’t know what he means”. She hands me the phone and I hear a faint and wobbly voice on the other end. It’s a conversation that will never, ever leave me.

“Hiya dad, you ok?”

“The paramedics are here…….”

I can still hear it in my head today. Dad’s wobbly distressed voice trying to find the words to say, only to find them repeating over and over.

As I run into the bathroom to put on some clothes, Sam keeps asking me what’s happening, what’s happened? “Dad said mum’s died but he must have made a mistake, he must have it wrong”. As I struggle to find my trainers I keep trying to have a conversation with Sam, but at the same time I keep going through scenarios in my head where he must have got the wrong end of the stick.“Maybe something has happened to mum that required paramedics and dad is in the garden. He thinks she’s died but she’s really ok inside the house. Either way, he’s got it wrong and he’s confused about what’s happened”.

A combination of Starsky and Hutch driving and no traffic makes sure that it only takes 5 minutes to get across town to their house. The whole journey is a bit of a blur as all I’m thinking is “He’s got it wrong. I’ll get there and mum will be stood in the kitchen saying that she’s fine and dad has just overreacted about something”.

As I pull into the cul-de-sac I’m greeted by 2 ambulances and a police car blocking the road. “Shit, shit, shit, no, no, no, no” is what I’m actually mumbling to myself as I get out the car and run toward the house. I run into the garden and straight into the kitchen at speed making Toby (the dog) bark and the 3 paramedics and policeman (that are stood in the kitchen) jump. I look into the front room and I can see dad stood (or more crumpled) in the corner of the room on his own, his face absolutely distraught and all he keeps repeating is “I’m sorry, I’m sorry, I’m sorry”. The first paramedic looks at me and says “I’m very sorry, there’s nothing else we can do I’m afraid”. I walk past them and toward my dad and I look to the end of the room. I can see mum on the floor with another paramedic next to her, but for some reason I just go straight to dad. I take him in my arms and he just absolutely sobs into my shoulder. “I’m sorry, I’m so sorry” is all he keeps repeating. I’ve never seen my dad cry before and even though this is the most horrendous situation ever, it catches me off guard. I keep telling him he’s got nothing to say sorry for and I get him to sit down. I then walk over to mum. Nothing prepares you for this moment and you just don’t know how you’re going to react. She just looks like she’s sleeping on the floor. I stroke her cheek and try to give her a little pep talk to make her wake up. I think the fact that dad is so distressed and that there are four people, just stood in the kitchen looking like they’ve wandered into the wrong party, is the main reason that I don’t get too hysterical. Dad comes over and sits with me next to mum. After a bit I get up and walk over to the paramedics to thank them for their efforts. The policeman asks if it’s possible for me to identify the body as my dad is in a bit of a state. I say it’s fine and he says he’ll get the paperwork ready. Rob (my brother) runs into the garden with Mandy (his soon to be wife) and he looks at me for reassurance but my face and body language tells him a different story to the one he wants to hear. They go into the front room and go straight to mum and dad.

The paramedics have done everything they can and are given the all clear to leave by the policeman who is sat in the front room. They all leave one by one. I then sit at the table with the policeman and we begin the identification………

Life. Changed. Forever.

I still can’t believe it’s been one year since she’s been gone. It seems so quick but at the same time it seems like forever. Dad’s still struggling big time. Luckily he’s decided to keep working because I think if he retired like he’d planned to, he would go stir crazy. All of mum’s things are in exactly the same places they were before that day. He feels guilty that she’s gone and there was nothing he could have done to prevent it. I think as soon as he finds his feet then we’ll all start to fall in line but unfortunately he’s still very rudderless. He is slowly getting better though. I saw my mum everyday and if I didn’t manage to see her then we’d speak on the phone, so it’s been a real struggle in that respect. Crazy little things that you realise are gone forever. Her Sunday lunches, her Iranian cooking and kebabs on a Thursday. Gone. She missed my brother getting married and Charlie being born. In some ways it’s lucky she missed Sam’s diagnosis and struggle because I know it would drive her nuts and she would be worrying 24/7. It’s still really hard trying to adjust. It’s almost like she’s just away on holiday and will be back at some point.

Miss you mum. Xxxx

In the 20 years that we’ve been together I’ve seen Sam give birth 4 times (3 natural and 1 through the sunroof), have an ulcer on her eyeball (through the use of contact lenses), have umpteen throat and eye infections, a sentinel lymph node biopsy and the FEC treatment, but I have never seen her complain, moan or stop once. She would just keep going no matter what. Docetaxel, however, has completely stopped Sam in her tracks. They weren’t wrong when they said that it was a nasty little bugger. They warned her that her joints and bones would ache and there would be some fatigue, but I don’t think Sam expected it to affect her so much.

“I feel like all my bones in my legs are being crushed bit by bit and it’s spreading up through my body”

That’s how she described the way she was feeling yesterday. She hasn’t been able to move off the sofa all weekend. Her face is red and swollen, she looks like she’s heating up all the time (either that or she’s drinking a lot of whiskey without me noticing), her eyes are starting to get really sore and swollen on one side and her skin is starting to really dry out. I think it’s safe to say that she’s not had the best bank holiday weekend so far. They say that this is only supposed to last a few days after the treatment, so hopefully she’ll start to feel better as the week goes on. We keep checking her temperature and so far she’s holding up ok.

One of the other main jobs is making sure that we keep an eye on how many paracetamol and neurofen she’s taking because it’s easy to lose count in a situation like this. I think we’ll make sure we get something stronger for the next session of Docetaxel though because so far nothing else has touched the pain.

The only advantage (If you can call it that) we can take from this weekend is that at least Sam is armed with the knowledge of what to expect the next time round. She can request certain medicines to help combat the side effects and maybe make things slightly more comfortable. She just has to make sure the list includes lots of eye drops, moisturiser, some big ass pain killers and a cocoon to wrap herself in for at least 5 days.