Welcome to the Himalayas

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.

Well that didn’t go too well. Healthy margins is what we wanted to hear but it turns out the margins had other things on their minds. We’ve just come out from seeing the surgeon and it turns out that the original gameplan hasn’t really worked in the way that they’d intended it to. It looks like a mastectomy is our only viable option right now. I knew something hadn’t gone to plan when the meeting started with small talk. It was exactly how our very first meeting went 6 months ago. Small talk with a chuckle and the not so good news slipped in alongside the “Anyway……..”.

When a lumpectomy is performed, the surgeon cuts out a cube type shape (kind of like a dice) which includes the tumour, plus a lot of healthy tissue to make sure everything is gone. Sometimes when they check it in the lab, they’ll get one side that won’t be clear. This means they have to go back in and scoop out some more to be certain. In Sam’s case there wasn’t just one side that was dodgy but at least 3 or 4 (sounds about right) which means that the chance of a successful lumpectomy is very slim. They also found that in amongst the clear tissue were some pre cancerous cells (that had been there a while) alongside quite a bit of a scar tissue that had been caused by the chemo.

You could actually see the disappointment across both Nia and the surgeon’s faces as they were sat talking to us. Their eyes didn’t leave Sam’s gaze once.

“Does that mean the cancer has spread?”

“No, the cancer hasn’t changed at all and the good news is that it’s still hormone receptive, so we’ll still be able to use Tamoxifen as a way of treatment as well”

Sam’s had this feeling all week that something wasn’t going to go to plan. She’s started to distrust her breast during the last 7 days. She’s been convinced that there was something still there and I don’t think that feeling was going to go away anytime soon. She even said to the surgeon that if they’d told her that the margins were good, she still wouldn’t have believed it.

The surgeon went on to tell Sam that they’d also found that the cancer cells had invaded the vascular channels in the breast. These are the channels that lead directly to the lymph nodes. This means that because they can’t be sure that none of the lymph nodes are infected, they will have to remove all of those as well just to be safe. If they left them in then there could be the possibility that the cancer could spread outside of the infected areas and travel around the body.

The radiotherapy is still planned at a later stage, although I’m not sure what they’re going to aim it at. I just hope they’ve still got a plan in mind that they know will work and that they’re not adopting the “throw everything but the kitchen sink” technique and hope that something sticks.

The tumour was 36mm in size when they removed it. That means it only shrunk 4mm during the chemotherapy sessions (what??? Is that it??). I asked if this was due to the lowering of dosage for the docetaxel but I was assured that this would not have made any difference.

So, we seem to have jumped up a couple of notches on the “Oh S##t” scale in the space of 24 hours. The fear is back again. I think we’ve managed to control it over the last few months but it’s now come back with a vengeance. We’re going to speak to Nia tomorrow to talk about dates for the surgery and hopefully some of that fear can be alleviated, but as it stands at the moment, it’s almost like we’re back to day one.

Had a phone call from Nia (when Sam was snoozing) this morning and the first thing she asked me was

“What is Sam doing out of hospital??”

Apparently, she went over to visit Sam this morning and found out that she’d managed to talk the nurses into letting her out last night. She said that she’d given the nurses strict instructions that Sam should stay in overnight, so she was shocked when she wasn’t there. Turns out Sam’s tactic for escaping was to wait until the shifts changed and then simply charm the new nurses into letting her go home. Sneaky little……… 😉

The good news is that the lumpectomy went to plan. The surgeon is pretty certain that she got everything out, but obviously we won’t be sure of that until the result of the healthy margins come back from the lab next week.

Sam has a slight dip in the middle of her breast but Nia said that they have a special technique when they put everything back together. They stitch in a certain way so that, as the swelling reduces, things move around inside and gaps get filled. If that doesn’t happen then there’s a technique where they can take some fat from Sam’s back or tummy and fill the hole with that.

We’ve been given an appointment for next Wednesday @ 2pm with the surgeon, where we should hopefully get the news that all the margins are good and the little fecker has gone. Once we get that brilliant news, it’s onto stage 3: Radiotherapy. 🙂

I received a text at about 6:15pm from Sam saying that she had literally just woken up from the anaesthetic (Did she go into the operation with her phone in her hand???) and that she was having a cup of tea. She still has 2 boobs, it’s just one has a 4-5cm cut running around the top of her nipple……..

11:10am Monday morning and we’re sat in a very busy xray department. There are patients on crutches, some holding their backs as they stand and wait to be called, some that are still in their beds (who have been wheeled down from the wards) and one man who has one leg on a chair (with no shoe on) with a very very swollen red foot that looks like it’s just been crushed (ouchie!). No signs are needed on any of these patients. Sam is called into the room to have the wire inserted into her breast whilst I’m left outside to entertain the kids and watch this guy squeeze his big toe on and off (nice). 20 minutes later and out she walks with a reel of wire strapped to the top of her breast.

“I’ve just got to go and have a mammogram to check that it’s in the right place”

To which an old lady (who is sat next to me) replies

“I’m waiting for one of those. It’s like putting your boobs in a sandwich toaster”

And with that, she gets up and walks away.

“Daddy, what’s a sandwich toaster?”

“It’s what Mummy’s about to put her boobies in babe….. “

Sam comes out of the room after her mammogram and sits down next to me. About 2 minutes later, the consultant radiologist comes out and says that it looks like the wire is in the optimum place and that everything should be good for the surgeon. He wishes Sam luck and we head off to the 7th floor to check in for surgery.

As we walk toward the lift, Sam says that the radiologist didn’t seem too optimistic about the lump. It’s almost as if he had his truth hat on. He said that it’s still quite a sizable lump and it changes everytime he looks at it. He said that they’ll do their best to take it out but, because it’s a big lump, they may have to do more than one attempt. It was almost like he was preparing her for whatever was coming her way.

As we walk into the surgical reception on the 7th floor we’re greeted by the head surgeon and some other staff who welcome Sam in and get her to start to sign lots of forms. I say my goodbyes and leave her in the waiting room.

So, here I am now, It’s 10:15pm and I’m sat looking at a woozy Samantha peeling off the dressings that she got scattered around her arm. She’s ok, just slightly light headed and not too sore…….yet. I picked her up around 9:15pm after they decided to let her come home. I’m actually surprised they actually let her out as it was getting late, but you know Sam, she probably used the force and made them believe it’s what they needed to do. Either that or she realised they’d run out of jacket potatoes.

So she’s got quite a neat 4-5cm cut around her nipple. It looks like the surgeon has done quite a good job. The only thing is, because it was late, everyone had gone home. The surgeon, the cancer nurses and anyone else who was involved in the surgery had gone, so we don’t know how it actually went. Did they get it all? Was it too big? Was it nasty? Was it fine? Will they have to try again? Most of these questions won’t be answered until tomorrow when we have spoken to someone (I think somebody is due to call us at some point in the morning) and of course most of the lab results won’t be back for another 10 days.

So it’s another waiting game I’m afraid. Another cliffhanger. We should get some important questions answered tomorrow, but the main answer won’t be until next week. That’s when we find out if there’s enough healthy margins surrounding the tumour that they removed. If there is then great, but if there isn’t, it’s going to be groundhog day all over again.

Pre op appointment went ok on Thursday. They found that Sam may be anaemic because her last blood test showed a low red blood count (this would explain the tiredness and lack of energy) so they retook another test to see if it had risen at all. If it’s low again then they’ll consider giving her a transfusion at the same time as the surgery, however, if it’s too low then the surgery could be under threat.

We had the meeting with Nia (our cancer nurse) and she went through what would happen tomorrow before the surgery. First thing she said was that this would be nowhere near as painful as the Sentinel Lymph Node biopsy that Sam had (which is nice to know). She also said that her recovery time from the anaesthetic would be slower due to the chemotherapy that she’s received and even though it’s day surgery, they expect that she’ll be in overnight.

Tomorrow, Sam will have what is called a “Wire Localisation Procedure” to prepare for the lumpectomy. She will go into the hospital at around 1030 where she will head over to the radiology department to see the consultant radiologist. He will give Sam an ultrasound to see where the lump is and then he will then insert a very fine needle (with a hollow middle) into her breast and place it directly in the centre of the tumour (more or less close to the clip that they put in at the beginning). Once the needle is in place, a slender wire is fed down through it’s middle and placed directly into the tumour. The needle is then withdrawn, leaving the wire in place. The radiologist will give Sam another scan to check that it’s in the right place and If it isn’t, then the sequence starts again. As soon as the optimum position is found then the wire is secured in place with a bandage or some tape.

The wire will act as a centre point for the surgeon who will use it as a guide when performing the lumpectomy. She will cut around and then remove the tumour by pulling it out like a plug (and completely intact) along with a good amount of healthy tissue surrounding it. This will then be sent off (completely intact) to the labs to look at under the microscope. Over the next 10 days they will be looking for a good amount of “healthy margins”. This is when the tumour has at least 1mm of healthy tissue all the way around it. If at any point they find that there is no healthy tissue (or there isn’t enough) then Sam will get called back into surgery and will have more tissue taken out until the margins are completely “healthy”. If, however, they find that they don’t have enough healthy margins the second time, then Sam will be offered (and recommended) a full mastectomy. There is no third attempt. This is usually a rare scenario though and only happens in a small percentage of cases.

We then talked about one of Sam’s main dilemmas. Mastectomy or lumpectomy? A lot of women choose to have a mastectomy straight away because they simply don’t “trust” their breast any more. They want it gone because they don’t trust it to not to go wrong again. Most women that Sam has talked to say that, if they were ever in her position, then they would opt for a double mastectomy to be certain the cancer is gone completely. This isn’t always an available choice. The NHS would never do a double mastectomy if only one breast had cancer in it. It’s only if they find the patient has the BRCA gene that they will consider this option. Also, after a mastectomy is carried out, its usually 18 months before any reconstruction can begin. This can be quite traumatic for some people as there is a massive amount of adjusting to be had during this time. A lot of people assume that everything (removal and reconstruction) is done at the same time but that’s not the case. The only time they would do a reconstruction at the same as the mastectomy is if the patient was not going to have any radiotherapy treatment. There is also evidence to suggest that having a lumpectomy and then radiotherapy treatment on the infected area is just as effective as having a full mastectomy. Also, another concern is that, say that after the lumpectomy is completed, Sam is left with half of her breast missing. She may as well have gone the whole hog, had the whole thing taken away and start again fresh with a full reconstruction. There’s nothing to suggest this would be the case and to be honest, nobody knows what’s going to happen until after tomorrow. They do these procedures in their thousands every day so we have to put our trust in the surgeons and hope that things will be ok. After all, most people who have gone through this journey would have already had this procedure done at the beginning. It’s only Sam (the awkward one) who’s doing it ass about face. 😉

It’s been just over 2 weeks since ‘the plan’ was revealed to us by the surgical team. Monday 14th July has been confirmed and it’s all systems go. Sam’s been a little apprehensive since the date was confirmed because she’s worried about how she’ll look after the surgery. She says that 2cm is still quite a large lump and because they have to remove the surrounding tissue as well as the tumour, she’s quite worried that it’s going to leave a big hole. She had a conversation with Nia about what would happen if there was a significant change in her breast (because of the surgery) and Nia said there are prosthetics (such as chicken fillets) that are available to patients if need be, but Sam says that reconstructive surgery would be the way she would go if that was the case. I just keep telling her to try not to think about it (easy for me to say) and concentrate on the positives instead of the negatives. She’s got better as the week’s gone on and she’s come to the conclusion that, as long as it saves her life, then that’s all that matters. Everything else can be worked on afterwards.

We had the ultra sound scan last Monday with their department’s head honcho. He explained to us that he’s involved in the meetings that are held by the various oncologists and surgeons that discuss all the treatment plans for all cancer patients. He remembered Sam and their first appointment when he took the biopsy of the tumour and he said that the main plan is breast conservation surgery. He said that in all the meetings that they’ve had, the plan was always to try and avoid a mastectomy, but if Sam insisted, then more radical surgery could be carried out. He started the scan and measured the size of the lump. It measured 29mm. That’s nearly a whole centimetre bigger than the MRI scan showed. (shiiiit). He told us that the MRI scan (although brilliant) doesn’t always show the size of objects accurately and this is why there is the difference. He said that it’s still small enough for a lumpectomy, but it’s obviously quite close to the 4cm limit that would automatically require a mastectomy. Apparently, the tumour didn’t shrink that much in the 2nd half of chemo due to the fact that they reduced the dosage of docetaxel for the final 3 sessions to relieve the stress on her bone marrow.

We’ve got Sam’s pre-op tomorrow morning where they’ll take blood, etc to check everything is ok for Monday. We’ve then got an appointment with one of the cancer care nurses who will talk through the surgery with Sam to let her know what to expect. She’ll then talk about the recovery and what will happen afterwards. We’ve got a whole bunch of questions to ask, so hopefully we’ll come out armed with more information.

5 months later and we’re sat in the exact same chairs, in the exact same corridor, staring at the exact same leaflets. It’s like a bad sequel. The only difference is that we’re no longer the new kids.

There’s a scene at the end of the movie ‘An Officer and a Gentlemen’ where Richard Gere is leaving his army base after completing his training. As he walks along, he passes all of these new recruits who are going through the same pain that he had to endure all those months before, only this time he’s the the more experienced one who knows what’s coming next. It’s a bit like that here this afternoon. There are lots of people walking past us as we’re sat here. Nurses come out of different rooms calling different names and you can see people who are in the same position as we were 5 months ago. They walk into the rooms holding each other as they face whatever news awaits them. It’s horrible to think that they’re going to have that same shocked feeling if they are told the news. The numbness, the slowing down of time for a minute or the not hearing a word anyone says because all they can hear is the C word repeating in their head, over and over and over.

Nia, our very first cancer nurse (and one that we haven’t seen since February) spots Sam from across the corridor and comes straight over. She seems genuinely pleased to see her. She asks how Sam has coped with the chemo and how it affected her. She then starts to explain that surgery will normally be scheduled 4-6 weeks after the last chemo date. This is to let the body recover from the gruelling sessions that it’s had to endure for the last 5 months. I took this opportunity to ask my favourite question:

“Won’t leaving it so long mean that the tumour will grow back?”

“No! It will not grow back in that time. You have nothing to worry about”

That’s the answer and response I was looking for. She looked at me with authority and made me feel at ease. That’s better. Much better.

She takes us into a room and we sit and wait for the head surgeon to walk in. It’s a little room with a sink and an ultra sound scanner in it. It’s quite warm and for some reason there are air freshener sprays scattered around. We’re sat here for approx 5 minutes when the door finally opens and in she walks (with Nia). Here we go….

After the formalities are out of the way, the details kick in. She starts off by saying there is good news (always a good way to start a conversation) and that the tumour has shrunk by 50%. It’s now only 2cm in size and good enough for Sam to just have a lumpectomy (yay!).

We then talk about the lymph nodes. They have decided that, due to the fact there was only a tiny trace of cancer located in one of the nodes, that they will not remove them but instead treat them with radiotherapy. I’m quite happy with this decision as I was worried that if they removed all of them, then this would get rid of any defence that Sam would have against any kind of infection or comeback that could come her way. However, she did say that if the cancer had been found in both lymph nodes, then we would be having a different conversation altogether. Overall though everything sounds promising.

The date they have pencilled in for Sam to have the lumpectomy is July 14th. That will make it just over 4 weeks since her final chemo session. They’re going to call us tomorrow to confirm the date, but it looks like it’s going to go ahead on this day.

Great news!! I was really worried that it was going to be a long time before the surgery would take place, but I’m really pleased that it’s going to happen really soon. It’s day surgery apparently, so Sam won’t have to stay in overnight (unless she reacts badly to the anaesthetic) but she’s getting a dab hand at this surgery lark so I’ll expect she’ll be out within the hour (unless she gets her craving for jacket potatoes back again). 😉

So here we are. It’s almost like we’ve gone full circle and come back to the beginning again. I feel like I can almost take my 2nd or 3rd post on this blog and just copy and paste. It’s been such a life changing journey already and, if you think about it, we’re only really halfway through.

We were sat eating lunch this afternoon before I had to go back to work when, without really realising it, I let out a little sigh…….

“You ok, what’s wrong”

“Nothings wrong, I’m ok. I just want tomorrow to be here already so we can have more answers”

“I don’t. I just want to run away and hide”

It’s at this point I realised how Sam really felt. All she wants to do is sit in the corner of the room (with her hands covering her ears) and wish that it would all go away. She knows we have no choice but to hit it head on, but the butterflies and knots in her stomach must be intense.

The MRI went without a hitch yesterday, however, there was no ultra sound scan because that’s scheduled for next Monday morning instead. Sam mentioned it to Jill (our cancer nurse) because the surgical team wanted it done before this meeting, but she said it would be ok as they would probably have a good idea of what they want to do already (as far as the lymph nodes are concerned).

Sam’s hair has started to come back slowly. At the moment she’s got this thin whispy covering on her head. I don’t know how long it will stay there for though because it’s quite brittle. It just seems to snap off when you pull it. I’m in two minds whether to shave it again because, even though I’m pretty sure it will strengthen it up, I’m very aware that she’ll have to go through this annoying whispy stage again from the start.

So, 2pm is our appointment with the surgical team tomorrow. It’s where we’ll get the results of the MRI and find out what they have planned to get rid of this thing. In the meantime, positive thoughts is what we’ll need and positive thoughts is what we’ll have. 🙂

Chemo Bubble. That’s what I’m calling it because that’s where we’ve been for the last 4/5 months. We haven’t really had to think about anything else (the future, etc) as everything has been planned out for us. I mean, we knew what the various stages were, but they were always in the distance and the 18 or so weeks of chemo seemed like a such long time. We’ve sort of got used to our routine of the 3 week loop (although I’ve been the spectator, so it’s easy for me to say that) but now that routine has come to an end and the bubble has popped. This (horrible) ride is on the move again so that means there’s also a whole lot of new challenges, nerves and worries coming our way. Once again we have to program ourselves not to think too far ahead of each step otherwise we’ll drive ourselves crazy. You have to just keep repeating “One step at a time. One step at a time” to snap yourself out of it but sometimes it’s not easy.

The aches in Sam’s joints are in her ankles at the moment and she says that she can feel her bones pulsating through her legs (which is nice). One thing that’s been worrying me is that Sam’s had a dull pain at the base of her back for just over a week. Now, this is where your mind starts going nuts (and if my mind is going nuts, I can’t imagine what hers is doing).

“Where has that ache come from?”
“Why is it aching?”
“What’s causing that……?”

I can see her face change when she stands up to walk anywhere. I’ve done my best not to Google anything, but this morning I caved and decided to consult the online minefield that is Internet self diagnosis. Turns out that back pain is one of the main side effects of docetaxel. It’s put my mind at rest quite a bit knowing that it’s a recognised side effect and that it just comes with the territory. I still think we need to mention it to the doctors though.

We still haven’t had a time through for the MRI on Monday, or a date for the ultra sound scan (to check the state of play with the lymph nodes) yet, but I’m sure they’ll come through in the next day or so. The lymph nodes are the talking point between us at the moment because we’re not exactly sure what’s going to happen with them. When Sam had the ultra sound scan (before the biopsy and diagnosis) they came out clear, but when they did the Sentinel Node Biopsy it came back with a trace of cancer in one of the two that they had removed. At the time our consultant didn’t seem too alarmed about it because she said that usually, if the cancer had spread to the lymph nodes, then both Sentinel nodes would have cancer in them, but in this case there was only a tiny trace in one of them. We asked her what this would mean in terms of treatment and she said that there would be a full auxiliary clearance of all the lymph nodes (just to be safe) when they do the surgery. However, when we switched to Dr Smooth he told us there’s a chance that they would be over treating Sam and indicated that they wouldn’t touch them at all. So, as of now we’re in an unknown place as far as the nodes are concerned. It’s not an ideal situation but we should have a better idea of what’s going to happen next week. Sam isn’t sure if she’s going to trust the ultra sound scan at all. She says that even if it shows the lymph nodes are clear, it doesn’t necessarily mean that’s the case because the original scan showed that they were ok when clearly they weren’t. She said that she just wants the surgeon to take them all out, but we don’t know what they’ll advise next week because we never actually found out how much cancer was in the node. Hopefully it was only miniscule and they’ll say that there’s nothing to worry about, but like I said before, your mind can go crazy if you let it.