Welcome to the Himalayas

Time to put the vein on tap.

Over the last couple of days Sam has developed this little game in her head. It’s to see if she can break the record of how many hairs she can pull out in one go. “Look, seven!!” she excitedly yelled at me whilst I was eating my lunch yesterday. This was followed by 3 quick pulls in succession on different parts of her hair and each time she would count how many were in her hand. She almost had this disappointed look on her face as the number of hairs got less and less.

Most of the worry this week has been about childcare (and samcare) and how much time I should take off from work after Sam has her next session of chemotherapy. It’s a hard call to make because of the unpredictability of the whole thing. So far both jobs have been amazingly supportive and have been very flexible with the time off that I’ve had so far, but that can only go on for so long. I’m going to have to start taking time off unpaid soon, but to be honest, I’ve got more important things to worry about right now. We know that Sam will get knocked out quite a bit after the next session. This is because her immune system will be more or less wiped out, so we really do have to wrap her in kid gloves afterwards. She’s been quite lucky this last couple of weeks though. Apart from a monster headache and extreme tiredness she’s been relatively unscathed. Over the last few days she’s developed stomach cramps after she eats and she’s found her joints are aching quite a bit (especially at the bottom of her back) but I think that just comes with the territory.

Maddy and Harry are still holding up well and are both being very grown up about the whole situation. They keep asking questions and are up to date with everything that’s happening. We’re trying to keep them fully in the loop and being very open with them. Writing this blog has been very useful because I can see they’ll go off, read it at their own pace, take the information in and then come back and ask questions if they need to know more. Rosie’s too young to know what’s really going on (and Charlie just dribbles a lot) but she knows that mummy’s got a hurty booby and needs to go to the hospital quite a bit. So far they’ve taken everything in their stride, but I’ve got a feeling that things may change for everyone once Sam’s appearance starts to alter and reality kicks in.

May 1997. Sam and I had just moved into our first place and we decided that since we were now living on our own, (and not sharing with other people), that we should add another dimension to our new home. We travelled to various rescue centres around the South West looking for the new companion that would join our lives but we had no luck. We’d just been to Bristol dogs home and was heading home when we thought we should try the RSPCA in Bath. We had a look around and came across a litter of six 11 week old puppies that had been found wandering around the streets of the city. They were small, black and cute and all jumping up at the fence. The one we picked had a little white beard and was in the middle of the rabble. We went to the office to pay the donation that was required for adoption and then to sign a form to say that we would get her spayed when we get her home. As I went to the pen to collect her, I noticed that all the other pups were at the front to welcome me except her. I could see she was relaxing in the bed at the back of her pen on her own and staying out of the way of all the commotion, so I went in and collected her from the bed. We got her back and introduced her to her new home. She was very quiet to start off with, but as her confidence grew then her personality came out. She was the grumpiest puppy I’d ever seen in my life. She barked at anything new or anything that knocked on the door. When I say bark I just mean bark, it was never anything nasty or vicious, just “Bark, bark, bark”. If anyone new came to the house “Bark Bark Bark”. She would get used to them after 5 minutes and be nice and friendly but if they left the room for 2 seconds and came back in then it would be back to square one and “Bark, Bark, Bark”. Something must have happened to her in the first 10 weeks of her life to make her so nervous (and also they’re right when they say don’t get the puppy that doesn’t come to you). Underneath it all though she was a beautiful puppy. She was playful, friendly and very intelligent and also now part of our family. As the years went by we developed techniques to get around her nervousness. Whenever someone was coming to the house, we found that if she was outside and met the visitor in the street and then we all walked in the house together then she would be fine. No barking and no nervousness. However, if she was in the house first and then they walked in then all bets were off. If we all got in the car and someone new got in then there would be more barking, but If we all got in the car at the same time as the new visitor then she was fine. We thought maybe she was blind, but her eyesight was fine. Looks like she was just one kooky, crazy, grumpy ass dog. As the kids arrived one by one, she’d look at us as if to say “Not another one” and then give us the doggy middle finger and walk away. However, she became a best friend to all of them and became their personal hoover whenever they had snacks or food.

One thing you could never fault though was her loyalty and I don’t think there were many days in the past 17 years that we were away from her. She mellowed in her later years (although that may be down to her failing eyesight and dodgy “selective” hearing) but she was always a grumpy old goat if you ever visited the house for the first time. I always called her the duracell bunny of dogs because she just kept on going, but unfortunately her batteries were starting to run out. Taking her to the vet on Wednesday was one of the biggest grown up decisions that we’ve ever had to make and also one of the hardest. The time was definitely right though. Her legs were failing and she looked like she was ready. I thought considering what was happening with Sam and the fact that she was an old dog (Moose, not Sam) then it would be easier, but I was wrong. She has been part of this family for 17 years and that is a long time to be attached to something.

RIP Moose (you grumpy old git ;-)) Xxx

Sam’s week has been getting better and better as the days have gone on. She’s got her energy back and it looks like she’s avoided the vomit effect. She’s had her haircut really short and it’s knocked her for six. She wasn’t expecting to be as shocked as she was. It must have had some effect on her though because she decided to write some thoughts down before tiredness got the better of her:

“Well, who would have thought I’d get so upset about getting my hair cut short. It feels like I’m walking around naked (which is not the prettiest of sights at the best of times). I feel like my security blanket has been taken away and everything is on show. I thought I was ready and didn’t want my hair falling out in handfuls so decided I’ll have it cut short and take control. That way I’ll get used to it and then it won’t be such a shock, but boy I’ve been blown sideways!! I’m sure after the initial shock and a few days it will be fine but at the moment I’m devastated (Who knew I had so much grey hair as well). I’ve been advised not to colour, straighten or blow dry my hair now or for 6 months after it grows back so I will definitely need to get use to it”.

Sam’s got more used to it now but she’s definitely started noticing that something is happening to her hair. Looks like the shedding is starting. As far as her current haircut goes though, I personally think it looks lovely. 🙂 xxx

What’s the rule of thumb when giving injections? Are you supposed to stab in the needle or put it in slowly? At an angle or not at an angle? Should the person receiving the injection be standing up or laying down? I have to give Sam an injection in the evening to try to get her bone marrow to reproduce white blood cells quickly. They have to be done for 7 days after each chemo session. I seem to be able to do a “That wasn’t bad” jab one day and then a “YOU MUTHA F#$@€R!!” jab the next.

Looks like tiredness is the winner of the side effects this week (with nausea and taste buds coming a close 2nd and 3rd). She is absolutely drained, which I suppose is only natural considering her white and red blood cells are being killed one by one. Just doing normal things like carrying Charlie knocks the stuffing out of her. I can see she’s trying to fight it and be strong but it’s all becomes a bit overwhelming for her. She’s having a hard and very tearful day so far today but hopefully she’ll start getting stronger as the week goes on.

I made Sam ring the hospital just a minute ago because we hadn’t heard anything about the CT scan. She was on the phone for around 15 minutes talking to Becky so I knew something important was being said. When she walked back into the room I sat there and waited to hear what was said…………..

SCAN IS CLEAR!!! 🙂

Apart from an insignificant cyst on her liver (which we all have somewhere apparently) there is no sign of cancer anywhere else in her body (Thank f#@k for that). Her lymph nodes look a bit raised and angry but that could be down to the treatment. We already know there was a trace of cancer in one of the nodes, but the fact that they’re raised doesn’t necessarily mean that all the other nodes are infected. They could still end up taking them all out when they do the surgery, but that’s a decision that will be made closer to the time.

We’ve also had some more details on what will be happening in the next couple of weeks. On the 10th of March Sam has got an appointment to fit the PICC line into her arm. This is the permanent catheter that they will trace from her arm to just above her heart.

When Sam had her first session of chemotherapy there were lots of people with their hands in bowls of warm water. This was to make their veins come up so that the nurses can put a line in easier. The problem with having FEC-T is that the veins seal up and become very tough after each treatment. This makes it very hard to get a line in again afterwards. This can become very tricky for the nurses, but also very painful for patients when they have any future sessions. The PICC line basically puts her vein on tap and makes it easily turn off and onable. It’ll be an uncomfortable process but it will make future sessions a lot easier for Sam. The only downside is that there will be a permanent line on her arm which will be easy to knock when she’s around the house. It will basically look like this (but bandaged up):

On the 11th March we have an appointment to see the wig lady. This is where Sam can go and try on various wigs, scarves and other head wear that will help her with her hair loss. Apparently, the wig lady (I don’t think that’s her proper title) is excellent at what she does and can be a real help to people who are going through this. I’m not sure what kind of look Sam will want to go for but I’m told that some of the wigs are very realistic.

On the 12th March we have the pre chemo appointment where they will, once again, take Sam’s blood to check to see if she is able to proceed with her 2nd session (which will be the next day on the 13th March). They’ll also sit her down to talk about how she reacted to the first round of treatment.

So all in all she’s got a busy time that week. The good news today though is that we’ve at last had a positive result with the CT scan. I know it’s only a little gold nugget in a big pile of shit but at least they’re starting to appear. Phew. 😉

Well, it’s been 24 hours and so far so good. Apart from a mega headache, eyes that are sensitive to the light and being slightly away with the fairies, I would say she’s doing very well considering. Mind you, I keep watching her to see if she’s going to sprout wings or something unusual because you just know it’s going to catch up with her sooner or later. We all switched beds last night just in case Sam got bad in the night. Sam went into Harry’s bed, Harry went into Rosie’s bed and Rosie and Charlie came in with me. The only one who escaped the shuffle was Maddy (and funnily enough she’s the one who slept in the latest) .

Sam’s been told that her taste buds may change during her treatment so she may not enjoy her favourite foods anymore (I assume they go back to normal afterwards) . She’s also been advised, if possible, to avoid any meals that she does enjoy. This is because in the past, certain patients who have developed the sickness side effect have done so when they’ve been eating their favourite meal. Of course, once they’ve had the pleasure of experiencing this (whilst enjoying their favourite chinese, steak or Indian) they’ve realised they can never eat it again. This is because, psychologically, it’s forever associated with throwing up. Which is nice.

This afternoon we managed to get to the CT scan without a hitch (so that wasn’t as bad as we thought it was going to be). When we got there it was a quick in and out so thankfully there wasn’t too much waiting around. Unfortunately, the waiting part is for the results and we’re not sure when we’re going to get those. We’ll call the hospital on Monday so that we can make an appointment for sooner rather than later. Hopefully we can get a positive result at last. Sam is worried that they’re going to deliver bad news and say it’s located somewhere else, but that’s only natural when you’ve been kicked as many times as she has in the last 4 weeks. However, we have to and must remain positive. So, once again (without jinxing it), good news this time please Mr Scan. 😉

All done. That’s the first session complete. We’ve walked away with a suitcase full of pills that Sam has to take over the next couple of day (mostly anti sickness tablets) and a daily injection that I have to give her (apologies in advance babe xx). Sam’s ok considering the amount of toxic drugs she’s just been filled up with. She’s got a bit of a light woozy head and I think she’s developed chemo brain (bit like baby brain) quicker than she anticipated but the actual event was nowhere near as bad as she was dreading. Unfortunately, that was the easy part. The hard part starts now.

There is only one word I can use to describe the Macmillan ward that we’ve just been in, and that is “WOW”. First off it was packed. I can’t believe how busy it was. There were 3 rooms with 3 super recliners in each one (I wasn’t allowed to sit in one though 😦 ) and each recliner was taken by various patients, each of whom were accompanied by family members who were there for support. It’s only when you’re in the position that we’re in now that you see how brave people really are. The nurses and all of the volunteers that work in there make such a hard place so happy. Honestly, you would have thought we were in a bustling coffee shop as all of the people being treated would be chatting away and sharing stories with one another. The only thing that I found distracting and a bit off putting is that the man opposite us looked remarkably like Russ Abbott (ask your parents kids) . 😉

As for now, Sam is a living ticking time bomb. We are now at the mercy of the side effects. I keep looking at her to see what’s going to appear first. She’s ok at the moment (apart from the intense red wee) and I can see she’s getting more and more drowsy as the afternoon moves along. It’ll be interesting to see whether the vomit or the tiredness hits her first. It’ll be one or the other. Either that or she’ll start talking in a Jamaican accent by 6pm.

Blood test, urine sample, blood pressure and in flight safety presentation complete. Now they’re getting the drugs ready. Our lovely nurse Shirley has just gone through everything with us. What side effects Sam may get and what we have to look out for when we get home. If she feels any twinges, aches, pains, high temperature, low temperature, mouth ulcer, cracked lip, nosebleed, any unwell feeling of any kind, a sore throat, a cough, a bad tummy, diarrhoea or any kind of shakiness then we have to come to A&E straight away. We’re not allowed to leave it, not even for 10 minutes or it can become nasty (no pressure then). Trying to convince Sam that she has to let us know immediately if she gets any of these symptoms is going to be a tough one. Mummy’s tend to be a stubborn breed when it comes to asking for help.

One thing I’ve learnt so far this morning is that, when taking your blood, the nurses are not allowed to say “You may feel a little prick” (Especially to men). They have to say “You may feel a sharp scratch” instead. Go figure.

Well that’s the end of of the (pretend) week of normality. We’ve haven’t managed to get a cancellation appointment for the CT scan so looks like the Saturday scan still goes ahead (unless they decide against it in the morning). Tomorrow is when the journey really gets underway though with the start of 18.5 weeks of chemotherapy treatment.

Usually, when we’re getting ready to go to the hospital for a long day it usually ends up with us returning home with another little version of ourselves. No such luck this time. The only thing we’re going to come home with tomorrow is a drugged up mummy and a handful of unknown side effects. It’s horrible not knowing how Sam is going to react to everything. Is she going to be sick, will she be zoned out and away with the fairies, or will she be like nothing has happened? We’ve got to be at the hospital by 0850 so that she can get ready for her pre chemo appointment. I assume this is when they’ll take bloods, etc, to make sure her white blood cell count is high enough to start the chemo treatment. We’ll have one of these pre chemotherapy appointments before each treatment day to make sure she’s fit enough to endure the chemo session. If she isn’t, then they will postpone the treatment until she’s strong enough to fight off any infection that’ll come her way. After tomorrow we’ll have to treat her with kid gloves and make sure she doesn’t come into contact with anyone that may have any kind of cough, sniffles or sneezes because her immune system will be really low. I’ve heard that some cancer patients are given the flu jab before their treatment begins so it will bolster whatever immune system they’re left with, but I’m not sure if they’ve got one of these planned for Sam. We’re going to be in the hospital for at least 5 hours tomorrow so I will “live” blog things as they happen so that I can keep you all updated (that’s the plan anyway).

Sam has been relatively calm today considering she’s been a nervous wreck all week. She’s suffered from stomach cramps, diarrhoea, adult acne and has got her period 2 weeks early (and this before she’s been pumped full of any drugs) so you can tell her stress levels are at an all time high. I think she’s slightly confused though because today she’s been “nesting”. Now, I’ve only ever seen her do this in the days before she’s due to give birth but today she’s cleaned the house, cleaned the windows, gone shopping and cooked a roast for dinner. She’s just washed her hair and now she’s downstairs in the front room straightening it ready for tomorrow. I asked her why she’s going into all that effort by doing her hair. She said it needed washing and there was no way she wasn’t going to straighten it. I mean, don’t get me wrong, I love it when she takes pride in her hair and she looks beautiful for it. It’s just that I can’t help feeling that it’s a bit like decorating an extension knowing that you’re going to have to knock it down the next week. 😉