Welcome to the Himalayas

It’s injection time again and this time I’ve taken advice. Seems I was doing it all wrong before by not going in at an angle (that’s why Sam always had this look like she wanted to punch me) . One unforseen problem that’s arisen from our home injections is that Rosie is starting to become fearful of them. Whenever it’s time for Sam’s jab, Rosie gets a little hysterical. Unfortunately she’s starting to associate an injection with pain. We don’t do the injections in front of her but she’s picked up on what’s happening. We changed tactic on the last 4 jabs by making sure we were always laughing and having a good time whenever we did them. It seemed to have done the trick. It also helped me out because if I gave a dodgy injection by accident and caused Sam pain, then she would have no choice but to laugh and pretend it was great instead of kicking my ass. Thanks Rosie. 😉

So, goodbye FEC, it’s been nice knowing you. Unfortunately, we’ve got to meet your evil cousin next time out. Taxotere (or Docetaxel as it’s also known) is on the agenda for the next 3 sessions (which they’ve kindly spread out over the next 9 weeks) . Now, the usual side effects that are included with this package (sickness, tiredness, diarrhoea, anemia, loss of appetite, taste change, sore mouth and bruising and bleeding) are all present and correct, but this time they come with added extras. Bonus features include numbness and tingling of the hands and feet. These are caused by the effects that Docetaxel (Taxotere) has on the nerves. Apparently It can cause you to have trouble doing up buttons and other fiddly little tasks as your hands become hard to use. If Sam gets this then she can get the doctors to lower the dosage of Docetaxel and this should help. Usually the effects will start to fade after treatment, however, sometimes they can become permanent and will never go away (thanks doc). Another added extra is dry/sore skin. Sam has been advised to moisturise like crazy when she’s being treated with Docetaxel because it will really dry out her skin and cause it to crack, go red and become very sore. Udder cream is a good moisturiser to use apparently (yes, it does exactly what it says on the tin). Another newcomer to the party is fluid retention. Sam may find that she puts on weight generally, or her legs and ankles become swollen with the build up of fluid that is caused by the chemo. If this starts to happen then she can got to the doctors and be given more steroid tablets to help combat it. Sam’s muscles and joints will start to ache quite a lot with Docetaxel. Sometimes this can get so bad that it makes it hard to do everyday tasks. Warm baths are the only things that are advised to help with this. Finally, we have the killer of fingernails and toenails. This is where Sam’s nails will become brittle and have the potential to just snap off. One piece of advice that they give is to paint your fingernails black. This is because it’s the sunlight that can cause the brittleness and cause them to snap off and sometimes the black colour will shield them. I’ve spoken to some people who have not been able to walk because their toenails have become so sore and bloody that it’s impossible to put your feet on the floor.

So, another great sales pitch for chemotherapy. I suppose it doesn’t matter what happens as long as it kicks the hell out of the cancer and gets rid of it for good. We’ll know how much of an ass kicking it’s getting on the 16th April when we have the MRI scan to measure the size of the lump. We’ll then be able to see if it’s shrunk at all. You do get the feeling though that things are going to get a lot tougher. It’s almost as if FEC has lured us into a false sense of security and now the real villain has turned up to do its thing.

So that’s it. The halfway point done. Although it seems that FEC has decided that it’s going to kick Sam’s ass this time round. She actually went to bed early tonight (she never does that), and boy, did she look like she needed it. She’s finding it hard to focus and she’s looking generally spaced out. I came upstairs to check on her about 40 minutes ago and she was sat next to the toilet looking white as a sheet. No sickness yet but I get the feeling it’s going to visit soon.

To me, parents with small children fall into two camps. There’s the one camp where the parents have worked out their night routines down to a tee and they’ve managed to plan bedtimes, train their children to sleep all night (without hearing a peep from them) and are able to get a perfect nights sleep more or less everyday. Then there’s the other camp, (which we have a gold card with), where the night routine has never ever been perfected and an uninterrupted night’s sleep does happen, it’s just once in a blue moon.

We’ve never mastered the bedtime routine with our kids. With Maddy we tried the “controlled crying” technique (too soft), the “sit in the room and move further away each night” technique (too boring) and even the “ambient background noise in bedroom” technique (too noisy), but none of those worked. In the end we just used the well known “sit with her until she goes to sleep and then wait for her to run through when she wakes up at any point in the night and then let her get into your bed” technique (so much easier). Harry arrived not long after Maddy and once again the bedtime routine for him started well. This was until the little monkey finally worked out why Maddy was always in our bed when he woke up. From that point it was a competition to see who would get into our bed first. Now, I know some people may think “Why did you let them do that?”, but to be honest it was always around 2am or 3am and as soon as they ran through and got into our bed they would just go straight back to sleep. It would’ve been a different story if they wanted to play. I suppose, as parents, you find a system that gets you the most amount of sleep and this was our system. There’s one couple I know who have a single mattress next to their bed and when their kids come through one by one during the night the dad just slips off the edge of his bed, onto the mattress and then they all go back to sleep. It never went to that extreme with us. Both Maddy and Harry eventually grew out of the habit of coming into our room and decided their own rooms were much comfier. The problem is Rosie has now developed the same run through technique, only this time it’s with added stealth. You could always hear Maddy and Harry coming a mile off, but Rosie has this unbelievable talent of not making a sound. She just glides through silently like a ninja and will get in the middle of our bed without creating a ripple. Most of the time I’ll roll over in bed and discover this little foot in my face and I’ll spend the next 5 minutes trying to work out how the hell she managed that. Charlie is still in his cot and we’ve trained him to go to sleep on his own without any bells and whistles and so far, so good. Apart from waking for his usual feed in the night he’s not too bad and anyway, you get used to the broken sleep eventually. Thing is, whenever they do have that rare night when they all sleep right through the night without a sound, we end up thinking something is wrong and will wake up to go round to check they’re all breathing ok just to be sure. We’re our own worst enemy. 😉

Pre chemo went well today. We saw the oncologist and explained to her about Sam’s skin and she looked to see if there was anything she could prescribe. Most of the tablets would muck around with her hormones so she was reluctant to prescribe any of those so in the end she’s given her some antibiotic cream that she can use instead. Hopefully this will help sort the problem out.

We’ve got an MRI scan scheduled for the 16th April where we’ll be able to see if the little git is responding to treatment and shrinking in size. One little encouraging sign is when the oncologist was examining Sam for the lump, she thought she had the wrong breast because she couldn’t feel the lump because it felt so much smaller. We won’t know the size change for certain until they do the MRI, so fingers crossed. If it has shrunk a lot and it is responding well then they may extend the FEC sessions for a while longer to give it more of a kicking.

As it is tomorrow is the last session of FEC before we move onto the T. Unfortunately, the T (taxotere) is a much stronger chemo and more of an evil bugger than FEC. It also comes with a whole different range of side effects but I’ll go into more details about that at a later date.

Let’s just concentrate on one FECker at a time shall we. 😉

I suppose in a way it’s like waiting for that perfect meal. You’ve craved it for ages and you’re absolutely starving, but when it eventually turns up at the table you just look at it and say “Meh”. All of a sudden you find that it doesn’t look as good as you remember and you’ve gone past that point of being hungry anyway. It’s been a bit like that for Sam and the wig. 2 weeks ago she was absolutely gutted that she had to wait so long for it to arrive, but that was when her hair was thinning. The original plan was to get the wig before her hair did a disappearing act on her. She was going to shave her head and then wear the wig straight away so that nobody would be any the wiser. The problem now is that everybody she knows is in on the secret, so wearing the wig would just highlight it. She’s been out now quite a few times with a hat or a scarf on and I think she’s getting used to the idea. People haven’t been staring or pointing (although there have been a few double takes) and shes got over that first hurdle of going out in public, so the novelty of the wig has sort of worn off. Also, you know when you get your haircut and it looks really nice, but then when you get home you realise that you can’t get it to look the same when you try and style it? Well turns out the same applies when you get a wig. It just never goes on in the same way. One moment you look fine and then the next you end up looking like a Tina Turner tribute act.

Sam went to see the doctor on Friday because her adult acne has come back with a vengeance. She got it really bad when she was pregnant with Rosie and then again when she was having Charlie. Well, now it’s come back angrier than ever.

It’s got to be the hormones in her body going nuts that’s causing it and the thing is you can’t help but feel that the 2 pregnancies plus the hormone explosion has helped create this whole situation. You also have to wonder whether her body was giving her warning signs early on that something wasn’t quite right. She’s actually found herself looking forward to the chemo sessions now because whenever she has it her skin clears up for 2 weeks. The doctor couldn’t believe it. She said she’s the first patient she’s come across who’s actually found an advantage to having chemotherapy. Unfortunately, she wasn’t prepared to prescribe her anything without talking to the oncologist first. She said that she had to make sure that the usual treatment wouldn’t interfere with anything that was already going on. Hopefully on Wednesday the oncologist will be able to give her something that will help treat it.

“Mummy, can you not come to my assembly on Friday? I don’t want my friends asking me lots of questions about what’s wrong with you and I’m afraid they’ll say you look ugly” and with that Harry burst into tears.

I wasn’t there for that exchange but I’m told there were tears on both sides. I think we’ve underestimated how much the change in Sam’s appearance has affected the kids. When I came home from work Sam explained to me what happened. She wasn’t angry with him and told me not to be either, but I could see it had damaged whatever confidence she didn’t have. I went into the middle room, sat both kids down and asked what happened. Harry immediately burst into tears (I think he thought I was angry) and started to explain that he didn’t want his friends looking at mummy funny and asking him questions. He calmed down when he realised I wasn’t cross and started to compose himself. I told him that if any of his friends said that mummy looked weird then he should just tell them to go and shave their mummy’s heads to see if they look half as good as his mummy does. I told him if they asked him questions about what was wrong then he should just tell them the truth and be honest with them. All of his close friends already know everything anyway. As I was talking to him you could see his posture change and he started to look proud. I told him that he was the man of house when I wasn’t there and that he has to protect mummy when she needs him. He stood up straight, walked out the room and then went and saw Sam. “I want you to come to my assembly mummy. I want you to be there”. Good boy Harry. Good boy. 🙂

That was last week and we all went to the assembly on Friday (Sam included) and Harry was very mature in the way he handled it. It was almost as if he was proud of his mummy’s new look. The visit did a lot for Sam’s confidence too because it got her over that first hurdle of braving the outside world with her appearance. I saw a couple of double takes from a couple of parents, but only because Sam was wearing a hat. It must have done her a world of good because we even went shopping afterwards. To be honest, you would never have known she was a fellow baldy because she pulls off the hat look with ease. All that walking around does tend to knacker her out though.

Talking of headgear, I was sent out the other day by Sam and her mum to purchase some head scarves for her. Before I left I was given strict instructions on what I had to purchase. I’m still not sure what these instructions were but I know I was told something. Now, it’s at this point I realised that you shouldn’t send out a man to buy a headscarf. Especially not me anyway. Send me out to find a gadget, a new TV or some kind of multimedia device, but not something that a woman would like to wear on her head. You see, when I got to the shop I was greeted by this:

But in reality, all I really saw was this:

Unfortunately, when I got home (after hours of searching) with my selection of headgear I was informed politely that, although very lovely, thick woolly hats are not suitable to wear in the spring.

As Sam mentioned in her previous post, her PICC line has been annoying her. She said she feels as if she has something crawling under her skin. Most of this is from the allergic reaction she keeps getting from the dressing that they use. We’ve been back to the hospital quite a few times to have different combinations of dressing put on but still each one reacts. Now, when something reacts on Sam she finds it really hard not to scratch and fiddle. She’s always been the same. If she has a scratch, burn or a scab then she’ll pick pick pick. It’ll last for months so she’s the worst person to get an allergic reaction. When we went back to the hospital on Wednesday she was adamant that she wanted the PICC line out. She said she would rather put up with the collapsed veins than have the constant irritation that she experiences at the moment. However, when she got there they were reluctant to remove it as the advantages of having it far outweighs the disadvantages of not having it (I think that makes sense). This time they decided to leave it free with just one bit of steri strip holding the line in her arm.

They would then use a dressing and bandage to wrap it up tight, however, they don’t usually like doing this because if she knocks it there’s a chance it could pull the PICC line out of her arm. It’s a bit better now but still not great. Still, rather that than collapsed veins. I’ve heard they can be nasty.

We’ve got to see Sue (the wig lady) on Thursday morning where we can see the final selection of wigs in Sam’s hair colour along with a few extra ones that she’s ordered for her. One is apparently called the Victoria Beckham wig. That’ll be interesting.

Hopefully they’ll get the Lady Gaga one in too. 😉

Well, it seems my husband has writers block, so I’m going to have to fill in until he recovers. 😉

Second chemo session went fine. The symptoms were very similar to the first session but seemed to last a few days longer. The tiredness was the hardest thing really (It was tiredness like I’ve never known 😦 ). My PICC line has been doing my head in since the day I had it put in (who knew I had such sensitive skin). I was allergic to all the dressings they kept using and they must have tried at least 6 different ones until they decided to use a non sticky dressing and a bandage. I wanted them to take the PICC line out but they were reluctant to do this because they said even though it may be uncomfortable it’s still a lot less painful that having collapsed veins from the chemo. It’s a lot better but still very annoying as it’s not very secure now that the sticky dressing has gone. Having said that, it’s much better than having the itchy skin. I felt like I had things crawling in my arm trying to get out and that’s not a feeling I would recommend at all (fingers crossed there’s no more reactions).

My biggest challenge this week has been my hair (or lack of it). My self confidence has taken a mega beating and I don’t have a clue what to do with my head. Scarves make me look like a fortune teller (but may have to try these again as the weather gets warmer), the little cotton beanie hats scream cancer (but are super comfy) and then there’s normal hats, which my lovely mum and step dad scourered the whole of taunton for. They managed to get me a different hat for each day of the week which are all great, but when you’ve never rocked a hat before it takes a while to get used to wearing one. It’s like trying to find your identity all over again (I hope that makes sense). Also, I’ve realised that to keep a hat on comfortably you need hair, so I’ve been wearing a cotton beanie hat with a normal hat on top. This way it’s secure because otherwise the hats just ride up and it tends to look a bit silly. It does get a little warm wearing them this way but I don’t really want people seeing any bald bits yet. Hopefully once I’ve got my confidence back I’ll be more comfortable. I’m getting my wig on Thursday so, in theory things should get a little easier. 🙂

I would (this is Sam by the way) just like to say how truly overwhelmed I am by all of your support and that I truly appreciate it. All your comments are so lovely and really do help me. I’m so lucky to have some wonderful family and friends and the lovely comments definitely are helping. It makes me and Rich feel like we’re not battling this alone. I don’t like writing on the blog as I’m nowhere near as articulate or funny as my wonderful husband (who I really couldn’t do this without). He truly is my rock and he makes everything seem like less of a struggle.

Both Maddy and Harry have struggled with me being bald. They both cried when they first saw me, but are ok now as long as I wear something on my head. Rosie and Charlie really couldn’t give a monkey’s but that’s just an age thing I guess. The kids certainly bring normality to the table (especially the little ones) and you just have to get on with it because they don’t understand what’s happening.

I’m really struggling today. I had a fairly good day yesterday but didn’t really rest so I think I’m paying for it today. I’m feeling very tired, emotional, my joints are all aching from the injection to boost my bone marrow and I’m slightly away with the fairies, but not in a happy way (if that makes sense). I thought maybe writing this down might help get out some of the emotion I’ve got bottled up. You never know, it might work wonders. I’m not one for moaning and I hate feeling this way but I suppose in this situation you’ve got to take the rough with the smooth.

I’ll let you know when I find the smooth 😉

The 2nd session went without a hitch, but the drugged up sensation is twice as bad. Sam’s eyes are struggling to focus on things and her concentration keeps wandering. Her arm is badly bruised where the PICC Line was fitted on Monday and she keeps getting an irritation from the dressing they’ve used. The PICC did it’s job though and made the whole event run smoother and quicker. She’s come out with an even bigger bag of pills that she’s got to take over the next few days. This is to help combat any side effects that may come her way. The bad news, however, is the dreaded injections are back. Let’s hope my technique has improved from last time (Again, apologies in advance babe).

When Sam came out of the hospital the one thing she was determined to do was to shave her head. Her hair had started to shed much quicker in the last 24 hours and it was starting to irritate her. She had to get out of the bath last night because the top of the water was just a layer of hair. We got home and got the clippers out. Sam did the first strike straight through the middle of her hair and then we took the obligatory “no hair on top but still on sides” photo.

It became apparent after we’d finished clipping that, even though a lot of hair had gone, there was still some thick areas left on her head. The result of this is her head looked a map of the world. It was time for my original recommendation. Shaving foam and a razor. Unfortunately, this is the one thing Sam didn’t want to do because she’d seen where I’d cut my head in the past with a razor and for some reason she didn’t trust me. However, after I showed her the atlas on her head she begrudgingly agreed.

Now, I shave my head with a razor every other day, so I consider myself quite experienced in this area but shaving someone else’s head with a razor is a completely different kettle of fish. I didn’t expect it to be so tricky. Sam had made me so paranoid that I was going to cut her that every time I hit resistance on her thick hair I had a mini panic. After 20 minutes of very safe shaving (with no niks or cuts) the job was complete. Sam was staring in disbelief at her reflection. The good thing is there were no tears. I was worried what her reaction was going to be, but I think the fact that she’d made the decision to go for it herself made the whole experience pain free. I think she pulls it off very well. She keeps focusing on a little bump in the middle of her head but I don’t think she’s got anything to worry about.

We’re just going to have fun confusing the kids. 😉

HER2 NEGATIVE  🙂

Please don’t think this is a gloat, because it isn’t. It’s not even a jumpy up and down with fists flying in the air kind of celebration. It’s more of a nice nod, accompanied with a hug, a smile and a thank you. We’ve come into contact with some lovely people since Sam’s diagnosis and some of them haven’t had the pleasure of experiencing that smile. They’ve been fed the news that their treatment has now been extended by 12 months on top of everything that they’ve had to go through already. Luckily, Herceptin is available to treat NHS patients that are diagnosed HER2 +. Up until 8 years ago there was no treatment available on the NHS. Herceptin was deemed too expensive to be given free, therefore, you had to pay for it privately and at £5k a shot only the chosen few could afford it. It wasn’t until a brave woman took the NHS to the high court to fight for the right to be treated and won that it was then fast tracked onto the NHS. I do feel slightly guilty, but I can’t help but feel another weight has been lifted. Don’t get me wrong, there’s still loads of weight there but at least it’s one more nugget to add to the pile.

Sam had her bloods taken at the pre chemo check today and they came back fine, so the second session goes ahead as planned tomorrow morning. It was weird watching them take the blood from the PICC Line and not from a needle (that vein literally is on tap). We were called into the consultants room and Sam was asked what side effects she suffered from after the first session. She was then prescribed medicine for the headache, the mouth ulcers and the stomach cramps. They then checked the lump and noticed it was a lot smaller than before. This may not be because of the chemo, it could have been swollen before (because of the biopsy) and just simply returned to it’s original size, but they’re going to book an MRI so they can check anyway. Either way it’s a nice thing to hear when your being checked by the consultant.

So, 11am tomorrow morning Sam will go through the mill once more and then she will, once again, be a slave to the side effects. Let’s see what this one brings to the table shall we……….