Monthly Archives: March 2014

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……….

Well, who’d have thought that some of the wigs would look so real. Don’t get me wrong, there were some shockers, but overall they were quite good. When we got there we met Sue (the wig lady) and she showed us through to her room. It was quite a big clinical room with a stool and mirror at one end but it wasn’t full of dummy heads with wigs on them like I thought it would be. Sam was given some brochures to look at and shown some options. Apparently, the longer the hair on the wig, the less realistic they look. We were told that we wouldn’t be able to come away with a wig today because they would need to order them in her natural hair colour. It would take a week for them to arrive and then Sam would make the final choice from the selection that was ordered. Sam was a bit disappointed because she was hoping we could get home tonight, I would shave her head and then she could just pop the wig on so that it would lessen the impact of having no hair. As Sue started sorting the wigs, it was decided that we would start off with a short haired wig first and then slowly work our way up to some bob cuts. Sam was saying that the one thing that she isn’t used to (and this only applies to women as men never understand it) and that’s having a fringe because she’s never had one. The problem is that all wigs come with one.

As Sam sat in the stool ready to start trying some wigs on, it became very obvious that this was going be a lot harder than she thought it would be. It’s almost as if the whole thing was becoming real. I could see the emotion in her face as the realisation that her hair was going to dissappear and this substitute was going to take its place hit home. Sue stood back as Sam had a little cry and then the nod was given to proceed. As each wig was tried on, the more relaxed Sam became and the more relaxed she became, the more she started to enjoy herself. After all the wigs were tried on Sue said that she would order a couple in Sam’s own hair colour and they would be here next week.

While I’ve been writing this post, Sam had a phone call from Sue. Unfortunately her appointment to pick up her wig is not for another fortnight. Sam is gutted. She doesn’t think her hair is going to last 2 more days and I know that she’s trying to resist having her hair shaved off when she doesn’t have her preferred option of covering. She’s bought a couple of scarves but when she tries these on they just scream “CANCER VICTIM!! LOOK AT ME!!” and just amplifies the fact that she’s ill. I think she should just bite the bullet and shave her head but I’m very aware that her reaction is going to be a bad one. The whole hair loss part of this horrible experience is really becoming much harder and trickier than both Sam and I thought it would be.

A couple of things I didn’t realise and learnt tonight:

You still have to shampoo and wash a wig (Really??).

Also I didn’t know that after you order a wig and get it home, you can then go to a hairdressers and get it cut to a style you like (what happens if it gets cut wrong? Won’t that just ruin it? It’s not like it’ll grow out afterwards).