Monthly Archives: August 2014

The reason I started this blog is because I wanted to keep people up to date with Sam’s journey from diagnosis, through to complete recovery. There was never a plan B. There was always only going to be one result at the end of this. I wanted to keep it informative and (sort of) light hearted at the same time. I wanted to let people, who may find themselves in the same unfortunate situation, informed about what they may experience throughout their own battle with this unpredictable little fu##er. Sometimes it’s been hard to know what to write when times have become a bit scary. I intended for this blog to be updated daily, but sometimes I find that I just go blank. Part of it is not knowing what to write when it’s not great news and some of it is purely to protect Sam from reading a blog (about herself) that may upset or scare her.

What I’ve come to realise during the last 7 months is that not one journey is the same. Everybody’s experience with cancer is different and there are never two experiences that are identical. The treatment side of things are more or less routine, but everybody’s cancer diagnosis is unique to themselves. Sam may have had a setback a couple of weeks ago with the mastectomy, but other people have had their own setbacks too. Sam dodged the HER2 gene but someone else we met didn’t. They now have to have to have the drug Herceptin administered by drip every 3 weeks for the next year. Sam found that her cancer was not really aggressive and responded to hormone therapy, but someone else we met found out that their cancer was triple negative and didn’t respond to hormone treatment. We were told by the cancer nurses when Sam was first diagnosed not to compare her cancer to other people’s experiences (especially ones with unhappy outcomes) because no two cases are the same. I didn’t believe it back then. I do now.

I don’t think I’ve ever been so nervous about an appointment before in my life. I mean, don’t get me wrong, we’ve had plenty of nerve-wracking meetings this year, but this one has to be the most important one yet. I’m not sure we can afford anymore setbacks. All I know is that we’re starting to run out of escape routes. If we get bad news on this one then I’m not too sure which direction we’ll take next.

We’re called into another small (but different) room. Our normal consultant that we normally see is on holiday, so we’re going to see the surgeon who performed the mastectomy on Sam instead. He will discuss with us the results of the tests that we’re carried out on the breast tissue and lymph nodes that were removed last week. What I don’t want to hear is small talk. Please, don’t ask us how we are generally feeling at the beginning of the meeting as this usually only means one thing. The nurse asks Sam if she can remove her top and lay on the bed as the surgeon will want to examine the wound. As she gets on the bed, there is a knock on the door. My heart is literally in my mouth as the door opens. The surgeon walks in with a massive folder, says his hellos and places the folder on a chair.

“How is that wound doing? Ah, it’s exactly how I expected it to be. There is some fluid build up, but we’ll drain some of that today”

(Ok, you’ve checked the wound, now please walk back toward the folder).

“So, how are you feeling generally?”

(Really??? Is this small talk right now? Please walk back toward the folder).

With that he walks toward the folder. As he starts to flick through the pages he starts to talk

“Ok, we’ve got the results of your tests from last week. We removed 17 lymph nodes during the surgery and the tests show that, apart from the Sentinel lymph node that had a small trace of cancer in it back in February, all 17 lymph nodes were clear. This is excellent news because this shows us that the cancer has not spread from the vascular invasion. We also found that throughout the breast tissue there were more pre cancerous cells present, however, the margins were healthy enough to show us that we have removed all of the cancer successfully.”

I think it’s fair enough to say that the meeting was a success. It’s brilliant news. It’s actually the best outcome from Sam’s mastectomy surgery. It’s hard to describe how much of a weight has been lifted from our shoulders but at the same time a slight weight remains. We’ve learnt to become cautious but the fear has, at least for the moment, disappeared. We are told that the cancer is now gone and they don’t expect it to come back. I think that until Sam has a CT scan that shows that she’s all clear everywhere else, then there will always be that slight caution in our minds, but I think this will always be the case as far as cancer goes.

The journey, however, is far from over. We’ve still got radiotherapy to go and now we have the reconstruction road to travel as well. It looks like we’re back on track for the time being and although I’m sure we’ll hit a few more bumps along the way, we will continue to fight and be positive. As it is for the moment though, cancer can kiss our butts. 😉

Can you believe that when Sam was going to leave the hospital on Monday, the only thing they were going to give her was paracetamol and ibuprofen as pain relief??!! It was only when Sam asked for something stronger did they prescribe Codine as a stronger option.

The pain has really kicked in for Sam now. She was really suffering last night and was in bed before 9pm. So far the area that’s giving her the most pain is not the mega scar, but actually where the drain goes into her side. Luckily we’re just on our way to the hospital to get it removed so at least she won’t have that hanging down by her feet anymore (and no more emptying the gunk into a cup).

The only issue that we’ve noticed she’s going to have with the removal of the drain is that, when they put it in and stuck the dressing on, they managed to put the sticky bit across the cut.

That’s gonna sting slightly.

I’ve given up trying to second guess how long the hospital will keep her in for. Sam had a meeting with the cancer nurse this morning who said that she could come home today if she wanted to. Believe it or not, Sam said no because she didn’t think she was ready, although after a couple of hours of thinking about it she thought “sod it” decided to make her escape.

Very very sore and very very wobbly is how I’d describe the way Sam is feeling. The bruise is starting to come out now which means the impressive war wound now has some art to go with it. It’s kind of scary to think that, before October 2013, Sam didn’t have one scar on her body. Now she’s got one for each day of the week.

She was a bit away with the fairies yesterday when I went to visit her in hospital. She was sat in bed with 2 tubes coming out of the side of her body with each one leading into 2 bags that were just hung down by her hip. These are drains that are designed to get rid of any fluid build up that may occur in the wound. That’s one of the reasons Sam didn’t want to come home today. She has to empty these bags twice a day and measure the contents into a cup (yummy). They talked through with Sam how to empty them and showed her what to do with the contents so she would be more confident when she got home. They then decided that one of the drains wasn’t draining enough fluid and that it would be more beneficial to remove it completely and just leave the one in. This is where it got a bit painful because, as it turns out, each tube is actually stitched into the skin which makes the removal of each tube quite tricky.

Sam didn’t sleep too well last night due to the combination of pain and the moany woman in the bed next to her. Luckily, the first thing she did when she got home was to have a couple of hours kip on the sofa to recharge some batteries.

We’ve got an appointment for next Wednesday (again) to get the results from the tissue that was removed yesterday. This will show us how much vascular invasion occurred (hopefully none) and how many lymph nodes (If any) have traces of cancer in them. This will determine whether or not Sam will go ahead and have radiotherapy treatment. If there are 4 or more infected lymph nodes, then a CT scan will be ordered to check other areas around the body.

In the meantime, Sam has been ordered to rest, not lift anything (Charlie included) for the next 2 weeks and look after herself completely. Looks like I’d better get my nurse’s outfit ready. 😉

I didn’t know what to expect really. I thought maybe 2 cuts. One for the breast and then one for the lymph node removal but what I saw made me swear out loud. I took the photo, showed Sam and she used the same expletives as me.

(other popular phrases include Holy S##t Batman, S##t the bed Fred and any other F’s, B’s and C’s that come to mind)

Sam sent me a text at around 1pm (ish) to say that she’d seen the surgeon and that they were getting ready to take her down to theatre. it was quickly followed by this message:

I’m quite worried about how she’s going to be psychologically after this. I know people say that it’s got to be done (and I agree with that), but it’s a big piece of her body being taken away and she’s already struggling with her hair, eyelashes and eyebrows being gone. In the end everything can be grown back or rebuilt but it’s going to take some adapting before things are going to get easier for her.

The operation should take roughly around 2 hours, so I’m sat here (without the kids) twiddling my thumbs, waiting for an “I’m awake” text from her.

Tomorrow is the day that Sam is going in for the mastectomy. She’ll go into the hospital in the morning for what will be quite a life changing event and this time I don’t think there’ll be any hoodwinking of the nurses at shift change to get out early. They say that she will be in hospital for a couple of days at least, although this is only due to the auxiliary clearance of the lymph nodes. Usually a mastectomy is performed as part of day surgery and most women go home on the same day.

We had a copy of the letter that the consultant sent to the doctor explaining what the situation is with Sam. It explained that the lumpectomy wasn’t successful and due to the “extensive nature of the cancer” a mastectomy was required. Extensive nature??? It’s weird how you know what the meaning of something is in real life situations, but you lose the meaning of it when you really concentrate on it. It’s like when you hear a word over and over. After a while it just doesn’t sound right.

We saw Nia last week and she went out of her way to reassure us that everything was normal and that the treatment was just taking a detour, but the vascular invasion aspect of things really scares me. Apparently, this happens in most cases where the tumour is quite large, but it’s still a scary position to be in. We’ll have a clearer picture of how much of an invasion there was in 10 days time when they test all the tissue that’s removed tomorrow.