Monthly Archives: June 2014

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.

Had a call from Jill (our cancer nurse) this morning informing us that the date for the MRI is on the 23rd June, followed by an appointment with the surgical team on the 25th June. This is excellent news and backs up the fact that the care we are receiving is top notch. I’m so pleased that we aren’t having to wait a long time before moving on to the next phase. Sam is understandably nervous about this next step as it could mean a big change for her, but we have to think positive and believe that the lump has shrunk enough for it to require just a little lumpectomy. They also want to do an ultra sound on Sam’s lymph nodes to check to see what they’re like but we won’t receive a date for that until early next week. We’ve been told that they’ll want to do that scan before the 25th June because it’s very important that the surgeons have that information before any plans are made.

Sam’s feeling a bit woozy today but the side effects aren’t due to hit until tomorrow. The steroids are keeping her afloat at the moment but they run out tonight so this time tomorrow is when she’ll start to feel worse. She’s decided to power through the next 4 or 5 days so that she can recover quicker. Looks like we’d better stock up on the pain killers and get ready for the storm to hit. Sorry babe. Xxx 😦

So that’s it. Stage one complete. I’m actually a bit nervous about the scan that Sam has to have in 3 weeks or so because, whatever the size of the lump, that is what we’re dealing with. No more shrinking. The size will be final.

Today’s chemo went ok. It was all done and dusted in just under 2 hours and Sam finished the chemo exactly the same way she started it….. with a smile.

Of course, not only was she pleased that the chemo had come to an end, she was also looking forward to having the PICC line removed from her arm after 4 uncomfortable months. No more having baths with one arm in the air, no more uncomfortable sleeping and no more irritation from the sticky dressing. The fitting of the PICC line took 45 minutes but the removal took no more than 20 seconds. They just pulled it out like a piece of string.

It was actually a bit weird today because we’ve got to know all the people in the macmillan ward quite well and it felt like we were leaving them. Another part of me, however, would be quite happy if we didn’t have to go back there ever again (no offence to the lovely people intended).

Now, this next bit is not a criticism. It is not a moan about the treatment or a dig at anyone who is involved with anything that we’ve had to deal with so far. It’s just far too entertaining to leave out. I just want to say (before anything else) that the way we’ve been looked after has been amazing. Absolutely amazing. The nurses, the doctors, the consultants, the administration staff and even the fellow patients have all been so welcoming and accommodating that it’s made the past 4/5 months whiz by. However, there is one tiny little alarm bell going off in my head and that alarm bell is dressed smartly, talks smoothly and I’m pretty sure has Marvin Gaye “let’s get it on” playing around in their head (on loop) as they walk around (in slow motion) talking to people. Nurses giggle and patients blush as they receive a little wink and a comforting smile. I am of course talking about the one, the only, Dr GQ Smooth. It’s not his ability as a consultant that’s setting off the alarm because he’s actually supposed to be at the top of his game, nor is it him as a person because he’s actually a really nice guy. Like I said before, its more a style thing more than anything.

Pre chemo was yesterday and the nurse showed us into the office. Dr Silver Fox was sat in his chair looking at his monitor. He turned, smiled and gave Sam a handshake as he said hello. He looked across at me and gave me that welcoming look and then proceeded to ask Sam (smoothly and quietly) about which side effects she had experienced after the last session. She explained about that the joint pains weren’t as bad but the anti depressants made her a bit spaced out for longer. He decided not to prescribe them again but told her to take the few that she had leftover only when she felt the pain coming on and not to take them every day. That way she would combat the joint pain but not have the spaced out feeling all the time. Sam then asked what happens next. He told her that we are now passed over to the surgical team and that we wouldn’t see the oncology department again until stage 3: Radiotherapy. The surgical team will be the ones who will study the scans and decide the next course of action. It’s at this point that Sam said that we hadn’t yet received the scan dates yet. Looking puzzled, Dr Suave checked his pc to see if there was any information from the radiology department. He brought up Sam’s notes on screen and started to go through them. Deep in concentration he read line after line looking for any nugget of information. He got about 3 pages in before Sam pointed out that it wasn’t her notes that he was looking at.

“I’m sorry?”

“Really? Oh, ha, wrong person. I’m going crazy”

And with that he logged out of the screen. He smoothly shuffled Sam’s notes and then re-entered her details into the pc. There were no details of any appointments made for any scans and he looked puzzled as to why not. He put the requests in again and said that if we hadn’t heard anything in a week then we should call the nurses and chase it up. I asked if Sam would need any top up sessions because of the dosage being dropped for each docetaxel session, but he said this wouldn’t be needed as they only really like to give 6 sessions overall. Sometimes they will do 8, but only on very special cases.

I’ve been a little concerned about the length of time that they’re going to wait before performing the surgery and to be honest, I would rather they got it out sooner rather than later (I mean, just get the little fecker out now!). I decided to seek reassurance from Dr Laidback that the intended timeframe is the right one.

“With the surgery not being planned for another 4-6 weeks, is there not a chance that the tumour will grow again in that time?”

He looked at me, turned his head slightly and replied

“I don’t know…… You’d have to be pretty unlucky if it did”.

And with that, he turned back to his computer.

Come on Doc!! Where’s the reassurance?? Where’s the “Don’t worry Mr Lester, it’s standard procedure and you can be reassured that we will do our utmost to get this tumour out in the quickest time possible”. I suppose we just have to trust the professionals and know that they deal with this kind of thing all the time. It’s just in a situation like this you want to be steered in a certain direction and not left to let your mind run away with you.

He checked Sam’s lump before we left and was pleased with the size (or lack of it). He said there was a little bit of thickening there (whatever that means) but overall he was happy.

Our time with the oncology department is over for now. We don’t see them again until just before radiotherapy. Stage two begins and we are now passed over to the surgical team. They will study the scans (when they’re done), decide what happens next and then hopefully we’ll get a few more clear cut answers about the next step. 🙂

So that’s it. Her worst fear confirmed. The eyelashes are now gone. She’s taken it quite well considering that it was the one side effect she was dreading the most. To be honest with you, I didn’t really notice they’d disappeared (maybe that’s just a man thing) until her eyes kept weeping as we were walking along the street. I suppose you just don’t realise how much protection your eyelashes give until you until they’re not there anymore. The left eyebrow is now the only thing left standing as the right one made a dash for it a couple of weeks ago.

Final chemo this week then. Well, that’s the plan anyway. I’ve got this niggling little feeling that they may want her to do some top up sessions due to the fact that she’s had 60% less dosage than their original plan. We’re apparently booked in for various scans at the end of June to get the update on the shrinkage (as long as Dr Laid Back booked them) but I expect we’ll have more details of those on Thursday at the final pre chemo. Talking of Dr Smooth, I did ask if we could possibly switch back to our original consultant but it looks like she’s somewhere else in the weeks that Sam has the chemo. Hopefully Dr Dynamic will be more lively this week as we have our appointment before lunch.

Another little nugget for Sam on Thursday is that she gets to say goodbye to the PICC line after all this time. They’ll remove it as soon as the chemo session has ended so she won’t have a tap attached to her arm anymore. No more bandages or irritated skin from the dressing that they use on her and no more weekly appointments to get it cleaned.

The side effects of the last Docetaxel were a bit different to before. There wasn’t as much joint pain because the anti depressants did their job of blocking it, however they did bring something new to the party. Previously Sam had 4 days of extreme joint pain that really did stop her in her tracks, but as soon as the 4th day passed she was back to normal almost immediately. This time round the joint pain was gone but what she did have was this feeling that she was outside of her body looking in for at least 10 days. On top of that her taste buds were more messed up and the fatigue was definitely worse. She’s now having the dilemma of whether to take the anti depressants or not. Should she put up with the joint pain for 4 days and recover quicker or be away with the fairies for twice as long? Either way, all she has to do is go through this 3 week loop once more and be as comfortable as she possibly can.

Sam has been one of the bravest people that I’ve ever known during this part of her life. Not once has she moaned, not once has she made other people feel uneasy around her (even when she’s been in pain) and not once has she spent hours laid in bed feeling sorry for herself. I personally don’t think I would have been able to hold off on that last one (but maybe that’s just a man thing) 😉