Monthly Archives: April 2014

Had pre chemo today and Sam’s bloods are good enough for tomorrow’s first Taxotere (or docetaxel as it’s also known) session to go ahead as planned. She’s a bit nervous because she’s sort of got used to the side effects of FEC over the last 9 weeks and now it’s back to the unknown. Each chemo session will now only last an hour instead of the 3 hours that we’ve become accustomed to with FEC. The oncologist has warned Sam that fatigue and achey muscles and joints will play a major part in the side effects this time round, although he’s hoping that the side effects will be much less because of the lower dosage that she’s scheduled to receive. They’ve apparently dropped the dosage by 20% so that her bone marrow doesn’t suffer again.

He had the MRI report this time round and he’s said that the tumour has definitely shrunk in size. Only problem was he couldn’t tell us by how much because they never actually wrote any measurements in the report. The tumour has split into 3 parts. One part is barely able to be seen, one part has fragmented and the last part has shrunk quite a bit. It would have been nice to have known measurements and there’s still a lot of questions that the oncologist couldn’t answer, but ultimately it’s great news that we’re on the right track.

In the meantime, tomorrow is back to reality, so let’s see what this new chemo brings to the party shall we.

Yesterday the doctors got the results back from the microbiologists. They were testing Sam’s bloods to see if it was growing any kind of infection because earlier in the week they had found something that indicated that this was the case. However, after 3 days of waiting, it came back clear. I think if it had come back positive then she would have a much longer stay.

The next step was to check the blood count again to see if it had risen in any way. The day before her count had been 0.43, but if there was any chance of her getting discharged then it had to be 1.00 or above. They took the bloods in the morning and by 2pm the count came back as 1.01 (phew!). She had passed the test by the skin of her teeth and luckily for Sam the doctors decided that it was a positive enough of a rise to let her come home. I’m a little worried that they may have let her out too early, but they said that as long as she keeps an eye on her temperature, takes her antibiotics for the next 2 days and rests then she should be fine (mind you, that’s what they said last week).

So we now have a very weak and wobbly (but happy) Samantha laid on the sofa with a blanket over her (and anyone who knows her knows that she doesn’t do this very often). Believe it or not she’s actually done as she’s told and rested completely. Miracles do happen. She’s being a very good patient today, although that may just come down to the fact that she’s got absolutely zero energy.

We’ve got another pre chemo review on Wednesday where we should have the MRI report and they’ll also do another blood count. Hopefully this time her count would have risen significantly and the treatment can continue without any more hiccups. It’ll also be with a different oncologist (for some reason) so it’ll be interesting to see what his take is on everything.

Our first challenge though is to get past this weekend without Sam stepping foot into her favourite hotel/hospital. I don’t think her digestive system can handle anymore jacket potatoes.

Wish us luck……. 😉

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Saw the oncologist today for the pre chemo appointment. She showed us a chart of Sam’s white blood cell count and it didn’t look healthy. Basically her white blood cells are in freefall and so far they’re not showing any signs of going back up. If they keep dropping then her treatment in the hospital will radically change. All of this means that tomorrow’s 4th chemo session is postponed because there’s literally no way her body would handle it.

The dosage of chemo that Sam’s been on has been pretty high and the oncologist said that her body handled the first 2 sessions pretty well. Her bone marrow carried on producing white blood cells like it should do afterwards, however, after the 3rd session it took a bit of a beating and hasn’t quite recovered yet. She’s being pumped full of grade A antibiotics every 4/6 hours and being given the injections to jump start her bone marrow again. Once the white blood cells start to rise then there’ll be no stopping them. They’ll also lower the dosage of future chemo sessions so that she doesn’t get into this situation again. I was worried that this would mean that any future treatment won’t be as effective as it was on the previous dosage, but they assured me it would be fine. They said that the tumour would react in the same way that the bone marrow does, so if that’s getting a kicking, then so will the tumour.

The results from the MRI weren’t available for this morning’s meeting so we’re none the wiser there I’m afraid. The oncologist did bring the pictures up on the screen but we all just sat and stared blankly at them (oncologist included). It just looked like a bunny rabbit to me. Hopefully there will be a full report attached to the pictures when we have another review meeting next Wednesday.

Oh yeah, had that chat with Maddy and Harry today about what they’d do if anything should happen during the night. Without the blink of an eye or any prompting from me, Maddy said she would call 999 whilst Harry would call Mummy, nanny or grandad. They said that they would also shut Rosie and Charlie in another room so they would protect them from seeing anything. They then continued to finish their breakfast without even asking why I’d asked them. It was almost like they’d already discussed it between themselves.

“Wait….. What?” Now I don’t know whether to be relieved because they both know what they’d do, or even more worried because they’ve already worked out a plan of action just in case.

I’ve really got to cut down on the kebabs.

Two people on Sam’s ward have died since she’s been in there. I didn’t know who the first one was, but the second one was an older lady who was in the bed opposite. Her husband was always visiting her and you could see that they were very much in love because he’d do absolutely everything for her. Apparently she had a cardiac arrest during the night. She was resuscitated successfully but the outlook didn’t look so good. The nurses were desperately trying to call the husband to come in, but with it being 0300 there was no answer. Their only option was to get a police car to go around and see him. When I got there this afternoon to visit Sam the bed was empty and made up. She was 93 apparently, but didn’t really look. All I know is, her husband must be completely lost. If you’d seen how they were together then you’d understand. It almost reminds me of the first 10 minutes of the Pixar movie “UP”. So, so heartbreaking.

Seeing someone you love in that environment does weird things to you. I woke up at 0200 this morning and had this micro panic whilst trying to get back to sleep. I had this thought going round and round in my head. “What happens if I go to sleep and don’t wake up? I’m the only adult in the house. Will the kids know what to do? What would they do? Would they panic? It’ll be horrible for them”. I had this plan that I was going to sit Maddy and Harry down and explain to them what they should do if that situation should ever happen. It was a good plan only let down by the fact that I forgot to do it (I’ll make sure I do it tomorrow).

I also learnt a valuable life lesson today. I learnt that it’s a good idea if you remember to put a nappy on your 3 year old who, even though doesn’t wear them in the day, would still maybe need one at night. Let’s say there was a little accident at around 0430 this morning when she sat up looking puzzled at her wet legs and wet bed. It’s bad enough that she’d wet the bed, but the killer detail was she’d snuck into our bed without me knowing and was asleep next to me.

Sam’s still in hospital. They kindly let her leave the ward to go and have her MRI scan (which hopefully we’ll have the results of tomorrow). They didn’t want to discharge her today because they’re still not sure where the infection is and what’s causing her blood count to drop. The oncologist said it’s really weird for a blood count to drop again once it’s started rising so they’re confused. They said that Sam has possibly just been unlucky. Something weird is going on though.

We’ll find out tomorrow whether the chemo session will go ahead as scheduled on Thursday or whether they’ll delay it for a week to let her body recover. Hopefully though she’ll be all good, get discharged and everything can stay on track.

Finally convinced/ordered (delete where applicable) Sam to go to A&E in the early hours of this morning after an evening of shivers, aches and fluctuating temperatures. Turns out her blood count was lower than they were last week. They’re not sure what’s causing the drop or where the infection is coming from so they’re trying to narrow it down. The problem is, if her count isn’t above 1.0 then they won’t be able to proceed with the chemo this Thursday (at the moment it’s 0.6) so hopefully it’ll rise before then. It looks like she’s in here for another couple of days at least.

On the upside, we’ve got a rearranged appointment for the MRI for this Tuesday. Hopefully we’ll find out how we’re progressing with the treatment and what size the lump is when we have the pre chemo appointment with the oncologist on Wednesday.

In the meantime Sam has been told she has to rest in here and try to get her energy back. The drip is reattached to her arm and the jacket potato is on order for dinner.

It’s almost like she hasn’t been away.

At around 0130 Sam’s temp peaked at 37.9° so I was ready to make a phone call. She wasn’t having any of it though and insisted she would be fine and it would drop again. After a little “huffy” disagreement between ourselves she went back to sleep. However, there was no way I could get back to sleep, so after 30 minutes I woke her up to take her temperature again. This time it had dropped to 37.1°. She then gave me that “told you so” look and rolled back over.

We’ve just checked it again now and it’s back down to normal figures so I’m not sure whether it was just me being over cautious or not. She’s still got the headache and is quite lightheaded but she says she’s ok.

We’re at the hospital this afternoon to have her PICC line cleaned so hopefully we can get more advice then.

The MRI scan that we had scheduled for today (to check to see if the lump is reacting to the chemotherapy treatment) was unfortunately cancelled by the hospital this morning. Apparently the MRI machine has broken down and they are awaiting an engineer to come and fix it. Hopefully we’ll get an emergency rescheduled appointment in the next couple of days otherwise we’ll have to wait until next month. It would be nice to have the results at next week’s pre chemo appointment with the oncologist, but then I suppose it’s not a massive issue as the treatment will still carry on regardless. It would just be nice to know if we’re on the right track.

Sam temperature is starting to rise again. The headache and achey joints that she had last week have returned. We’re taking her temp every half hour and it went up to 37.5 but then started to fall again (37.2 at the last check). If it hits 38 or above then it’s straight back to A&E. She’s afraid to take any kind of paracetamol to combat the headache because that’ll artificially lower her temperature and give a false reading. She’s in bed now so hopefully she’ll just sleep it off and feel better in the morning. However, just to be safe, we’ll continue to monitor her and we’ll do another check when Charlie wakes up for his feed. Part of me feels like I should rush her to A&E now, but then the other part thinks it would be a knee jerk reaction. She’s taking those monster antibiotics so hopefully she’s covered but we’ll see how she is during the night.

I’ll let you know how we get on in the morning…..

They must be running short of jacket potatoes in the hospital because they decided that her blood count was up enough for her to come home this afternoon. She’s still a bit weak and light headed but they’ve given her some super duper antibiotics that she’s got to take twice a day for the next 3 days.

Now it’s time to make sure that she takes it easy for the next few days.

Wish me luck…… 😉

I knew it wouldn’t take long. She’s bouncing off the walls in there. The good thing is that even though they moved her to a different ward, they’ve still kept her in a separate room. It’s so separate in fact, that you have to walk through a cleaning cupboard to get to her. She really is in isolation. I’ve told her to relax and take advantage of the time away (as best you can in hospital), but unfortunately she’s not a natural relaxer.

She told the nurses this morning that she really wanted to go home today so they took her bloods to do a count. Unfortunately for Sam, it says “review on Monday morning” in her notes so the decision wasn’t going to be made today. Also, she’s still connected up to a drip with another 14 hours worth of antibiotics to get through so she’s not going anywhere in a hurry. It didn’t help matters when they gave her a menu where she had to fill out her meal choices for the whole week (I think they’re trying to tell her something). So far her choices have been jacket potato, jacket potato and jacket potato. Not sure what variety she’ll pick for the next 5 days though.

Hopefully she won’t have to find out.

Well the system works well (in Yeovil at least). Unfortunately, the system in Taunton was shocking. In Sam’s little blue book there are numbers you should call if you’ve got issues. There’s the Yeovil number that you call during the day to get hold of someone and then there’s the Taunton number that you ring when it’s out of hours. I rang the out of hours number in the evening when Sam’s temperature was rising fast to get advice on what to do. I got an answerphone message asking to leave a name and number and they’d get right back to me. I explained Sam’s situation and what was happening and then sat back and waited for the call. That was 25 hours ago and we still haven’t heard anything from them.

As the evening went on Sam’s temperature got higher and higher and her heart rate got faster. They wheeled her into a side room in A&E where there was a bed and she had a little snooze until they transferred her up to a ward at around 5am. She’s been on a drip since she’s been there and they are pumping her full of antibiotics. She’s definitely in all weekend and they’ll reassess her on Monday to see if her blood count has risen. If it hasn’t risen enough then they’ll keep her there until it’s at a satisfactory level. Unfortunately for Sam this could take all week. She’s ok today because she’s had her own side room to make sure she doesn’t catch any bugs. Unfortunately, she’s just text me to say that they’re about to move her onto the ward.

That’s her week written off then………..