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They really have to sort out the exit on breast clinic day. When you attend the breast clinic you all sit in one area waiting for your name to be called. The only issue with this (and this is something we have first hand experience of) is that if you get bad news when you go into that little room (especially if it’s the first time you get told the news) then emotions can tend to take hold of you. You then have to make the long walk (and it takes ages when you’re in a blur) past everybody who just happen to be waiting for their name to be called, whilst all they’re doing is staring at everybody who’s walking in their direction thinking it might be the person that’s about to call their name. I suppose you could always turn left instead of right when you leave the room so that you walk past the STD clinic instead. Nobody is looking at anybody in that waiting area.

So, our name was called and we entered the room. A nice nurse escorted us in and told us that the consultant would be with us in a second. We looked at each other,

“You ready?”

“Yeah, you?”

With that, the door opened and in walked the consultant (on her own). I prepared for small talk, but before I knew it Sam looked up.

“I take it that you’re on your own because it’s good news”

“Yes, you’re right. The biopsy came back all clear.”

“Woop Woop!!!”

All clear?? Thank f##k for that!! It’s been a hell of a few weeks. Although I have to say that I was shocked it was all clear due to the fact I had prepared myself for the alternative. No sequels or comebacks on this occasion thank you very much.

Fibrous tissue seems to be the change that concerned them. The consultant apologised saying that they were just being overly cautious, but to be honest, I would rather they kept a close eye on her. The microcalcification deposits are still there and they don’t intend to remove those. Instead they will keep a close eye on them with the yearly mammogram. They inserted a clip when they did the biopsy. This way they can pinpoint the exact area when they carry out future scans and make sure they are behaving themselves.

We talked about Sam’s lack of confidence in her right breast and what options she had about removing it, but once again we were told that they would only remove it if there was an overwhelming medical reason for doing so.

One hurdle at a time though. It’s time to draw breath, kick back and enjoy the hot weather before trying to work out what the next move is going to be.

I’m just happy that it was only lumps on lumps having a party. 😉

So, what is Calcification? Well, there are two types:

MACROCALCIFICATIONS

These are coarse calcium deposits that form in the breast and are usually found on their own as a single lump. They’re a natural result of breast ageing and are found in half of women over the age of 50 and in about 1 in 10 of younger women. These show up as large white dots or dashes on a mammogram and are not linked with cancer. They usually don’t need any more checking or treatment.

MICROCALCIFICATIONS

These are tiny calcium deposits that show up as fine white specks on a mammogram and are usually found in an area of the breast where cells are being replaced more quickly than normal. Microcalcifactions are not usually formed because of cancer, but sometimes when a group of them are seen in one area to form a cluster, then this can be a sign of pre cancerous changes or early breast cancer.

Sam went in last Monday for her biopsy and found that she has a cluster of 8 microcalcifications in her right breast. She got called into the room and had to have a “mammogram guided core needle biopsy”. This is where they squeeze you tight in the machine (so I’m told as I don’t have experience in this area) and then perform the scan. The radiologist then goes off to check to make sure that it’s definitely a calcium deposit they have targeted (and not tissue). Once they are happy with their target, they come back to the room where they line up a thick hollow needle on a machine that, on the push of a button, punctures Sam’s breast to get the biopsy. They had to do this 8 times and it took over 2 and a half hours to complete!! When she eventually surfaced from the room, her breast and stomach were covered in blood due to the puncture wounds and Charlie, Rosie and myself had just completed our 70th lap of the hospital.

So, that’s where we are at the moment. We’re due to meet the breast consultant tomorrow afternoon (10th June) to get the results and find out if any of the lumps are cancerous (pre or full) or whether they are just lumps on lumps.

I just hope there’s no small talk.

Once again we’re sat in a busy x-ray department waiting for Sam’s name to be called, however, this time we have 2 little monkeys to keep amused whilst we waited for the time to pass. Trying to keep young children quiet is a nightmare if you’re surrounded by old and posh people. You know the kind of people I mean, the ones who stare and judge if a child’s voice goes above the sound of a whisper. Usually it’s not that stressful to keep them amused, but when you need them to behave themselves (or just sit quietly watching a video of Mr Tumble on your phone) they decide that, on this morning, no amount of cool tv characters or bribery snacks are going to work.

“I’m just going to take Charlie and Rosie for a lap around the hospital so that he has a change of scenery for 5 minutes. Won’t be long”

We were only gone 5 minutes but when we got back to our seats there was a buggy but no Sam.

“She got called in i’m afraid”

Bugger.

It had been 3 weeks since we’d last seen the consultant and eventually we received the appointment for the scan.

“I’ve got the date for my mammogram. I hope it’s not a bad omen but it’s on May 11th. The 2nd anniversary of your mum’s death”

“That’ll be a good omen then won’t it?”

“Who knows. Hope so”

It hadn’t been as bad as I thought it would be waiting for the scan date to come through, although we have gotten used to supressing our stress levels over the last year or so. I was just annoyed it was taking so long. I can’t fault the NHS for anything that they’ve done (they’ve been amazing) but when your name comes off of one list (cancer) and moves over to the other list (non cancer) then the time frames increase slightly. Ususally we would have got the date within a day or so and then it would have been for 2 days time. It’s not a massive increase, and I understand that under any normal circumstances this could even stretch to months, but it doesn’t help when you’re still dealing with the same issue. The worries are still there, but this time the naivety has gone so it kind of makes it worse (if you know what I mean).

Sam came out of the room and gestured for us to leave.

“How was it? Everything ok?”

“Yes all fine. She said the 3 lumps on the scar are just muscle and if I massage them then they’ll just eventually subside. The other lump is just a build up calcium (also known as calcification). Apparently it’s quite common in older women and tends to be harmless. Certain types of calcification can turn into cancer, but they’ll keep an eye on this one with regular mammograms. She said they’ll compare this mammogram to the one I had last year and if there’s any change then they’ll get me back in for a biopsy, but she doesn’t think I need to worry.”

Part of me wished that they had a taken a biopsy of the calcium lump just to be sure, because all you’re really doing is trusting the word of someone that everything is ok. Even though you come away really relieved, you still end up asking questions in your head. How do they know it’s ok? How do they know that it isn’t sinister? Shouldn’t they have delved slightly deeper? In the end you have to trust the experts because they do this every day and you could drive yourself crazy if you think too much about it. I mean, they spotted something wrong in the original lump after all. As it turns out, it seems I should have stopped asking questions because the following Monday the phone rang:

“Hi Sam, it’s Becky from the hospital. It’s nothing to worry about but we’ve compared the mammogram from last week to the one you had last year and I’m afraid there has been a change. This means that we need you back in for a biopsy. It’s probably just fibrous tissue but considering your history I think we need to investigate further just to be sure.”

Lesson of the week: Be careful what you wish for.

“I think I’ve found another lump, but I’ve been searching for so long now that I’ve made myself sore. Now I’m not sure if I was imagining it in the first place.”

Ever since Sam passed the one year anniversary of her initial diagnosis she’s become more and more conscious of searching for lumps in her right breast. I think it comes down to not trusting her body anymore (especially her remaining breast). I know that deep down she wishes that she had a double mastectomy instead of just the single one.

I had a feel to see if I could find anything, but to be honest I wasn’t too sure what I was looking for. I was so hoodwinked by the original lump last year that I wouldn’t trust myself to make a right or wrong judgement this time around. I did notice a tiny pea shape lump that seemed to float in and out of the area that I was searching, but that could have just been what they call “a thickening”. After all, Sam has been told by many consultants and doctors that her breasts are quite “glandy” (which is nice ).

“I think I felt something, but I’m not sure. We’ll call the hospital tomorrow and get you in for a check just to be sure”

Monday came and I got home from work.

“Did you call the hospital today? “

“No, sorry, didn’t get a chance. I can’t feel anything anymore. I just reckon my mind was playing tricks on me.”

“That’s ok, call them tomorrow anyway because there’s no harm in getting it checked. That’s what they’re there for”

“Ok, I will”

Tuesday came and went, as did the next Tuesday and the next. Easter then came, along with the kids holiday from school.

“Did you call them today?”

“I haven’t had a chance, especially with the kids being off for Easter. I don’t particularly want to make the phone call in front of Maddy and Harry because I don’t want to alarm them. I did try and call the hospital yesterday but got the answer phone and I didn’t fancy leaving a message. Besides, it’ll be a waste of time because there’s nothing there to check. I’ll call them next week”

The following week arrived and it was still in the back of my mind that the phone call hadn’t been made. The kids were all back at school today so only Charlie would be at home. As I went to leave for work I mentioned the phone call to Sam but this time her defence mechanism kicked in and she snapped at me.

“Don’t keep pressuring me to do it or I won’t bother at all!!”

“Ok, I won’t mention it again but it’s too important to ignore. I mean, It’s not like it’s a toothache that you’re getting checked is it.”

I could tell that deep down she was concerned, but I knew that she was in ostrich mode and had buried her head deep in the sand hoping that it would just all go away. I left for work hoping that the toothache comment would be enough to plant the seed of concern in her mind. Around midday my phone went off with a text message alert.

“I’ve called the hospital and got an appointment for tomorrow at 3:15pm to see the breast consultant”

Seed successfully planted.

As we sat in the corridor at the hospital I kept getting the “This is your fault” look from Sam. Once again I was the nervous one and she was the calm one.

“Samantha Lester?”

We walked into the room where we were greeted by Becky (one of the cancer support nurses). She gave Sam a big hug and asked how she’d been keeping. She pointed out that it was natural for her to be checking for anything and everything after what she’d been through. Becky asked Sam to take her top off and lay on the bed and then she left the room. Around 2 minutes later the door opened and in walked Becky, along with the consultant.

This is how the conversation went. (See if you can spot my contribution).

“Good afternoon Mrs Lester, how are you?”

“I’m fine thank you”

“And what have you found that is concerning you?”

“Well, I’ve found 3 lumps on this side and one on this side”

“Whaaaaaaaaat???!!!”

The consultant started to examine each lump (starting on the mastectomy side). These were the 3 lumps that Sam said she’d noticed.

“Ok, I don’t think these are anything but scar tissue that you’re feeling, but I will scan them just to be sure”

She then moved over to the other side. Sam found the spot where she was sure the lump was and guided the consultant to that area.

“I can feel a slight lump there but it’s quite deep. We’ll scan that one as well but I’m not sure if that’ll show up on the ultra sound.”

As the consultant scanned the 3 lumps, she was pretty certain they were just fatty tissue caused by the scarring, however, she was right about the lump on the other side not showing up on the scan.

“I’m going to bring your mammogram forward from July so we can get a better look at what’s going on but I’m not overly concerned. I don’t think it’s anything to worry about. You should get the appointment through within the next couple of weeks”

So, once again the waiting game was back. Oh, how I’d missed it.

“It’s ok. I’ll write one tonight……”

That’s what I’ve been saying whenever Sam has told me to write a new entry for the blog. I suppose that I’ve been running in the other direction (with a little mix of lazy) since that stressful day in August. I thought maybe it was time to take a break, to stop annoying people and to bury our heads in the sand for a while, however, I think it’s now time to come back for a bit to let you know what’s been happening during the last 5 months.

It’s also an important day today because it is exactly one year since Sam’s diagnosis. This time last year is when our crazy ass rollercoaster journey began and our lives changed completely. That evening, one half us was strong and brave, while the other half developed a stress headache, threw up and became useless (I’ll let you guess which way round it was). I wouldn’t say that our lives had fallen apart (we’re too strong for that) but I can say that it was paused at certain points so that we could re-adjust our collars slightly (but you know the rest so I won’t harp on about it).

So, like it or not, I’m back to annoy you slightly with updates of what’s been happening since August and how Sam has been since her treatment has finished. She’s good. Her joints ache slightly (she does a wicked impression of a 96 year old pensioner when she gets up in the morning) and she has experienced some hot flushes that have almost made her spontaneous combust, but those things are not at the top of her priority list at the moment. That award has to go to her hair. Let’s put it this way, do you remember that she was secretly wishing that her hair would be nice and straight when it grew back? Well, It looks like the wish fairies were on holiday when she handed in that request. 🙂

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)