Time flies when you’re having fun… Ok, it’s not fun but I’m glad it’s going fast! I’ve now had 2 cycles of ABVD out of 6, or 4 treatments out of 12. Whichever way you look at it I’m one third of the way through. I can’t say the end is in sight yet, and the more time I spend in Ward 19 the more it bothers me, but it’s all heading in the right direction.
Firstly, I had an overwhelming response from the last post about my hair loss. Every message was full of support and love and I wanted to thank everyone for their well wishes. It means a lot that people have taken time to read my blog let alone comment or send a message. Whilst I don’t regard myself as inspirational or brave (I’m just telling you all how it is and trying to be as honest as possible), it is humbling that so many of you are reading and following my story, so thank you for that. I would definitely recommend writing things down as a form of therapy or self-help – keeping this blog up has really helped me get my head round things and almost take feelings and thoughts out of my head and put them somewhere else. If nobody read my blogs or commented, I’d still be doing it because it makes me feel like I’ve downloaded things that I perhaps wouldn’t talk about. Let’s face it, I don’t want to constantly talk about what’s happening with my cancer, let alone expect other people to want to listen to me drone on every time they speak to me. That’s another good thing – I can meet up with people and because they already know what’s happening, there’s no need to go over the details. A quick, ‘how you feeling?’ is enough. I’m writing this now thinking, ‘I hope I don’t drone on about it, that would be a very depressing conversation for my poor friends and family’…. if I am, someone tell me to sort it out!
Talking about therapy or self-help, mental and emotional health is equally as important as physical health. Writing the blog was one tool that has helped, but I’ve tried a few other things too… Jigsaws, Colouring in, Music and singing (don’t laugh) and relaxation. I bought a Wasjig (a backwards jigsaw) and set it up on the kitchen table. Every now and again I’d sit at the table with Ivy next to me in her chair, put a random Spotify playlist on and crack on with the jigsaw. I’ve loved it! Happy to be a jigsaw geek!
What made me laugh the other day was receiving a jigsaw in the post without a card saying who it was from! I had to text people to ask if they had sent me a surprise jigsaw… I got a few funny responses back. It turned out that it was Hannah, but she’d forgotten to tell me! I’d told her that Mia, Cameron and Andrew had finished the other puzzle whilst I was outside she thought she’d get me a new one! It was a lovely surprise and I’m planning on getting it started this week.
The colouring started because my friend Marie, aka Ward buddy, bought me a mindfulness colouring book and pencils; very thoughtful and something I would probably never have thought to buy myself! I’ve started it and it’s actually very therapeutic, and I’m not too bad at staying within the lines. Never did I think that at 34 years old I’d be sitting on my bed, listening to George Michael, colouring in pretty patterns with a 9 week old baby in a milk-induced sleep. #lifegoals
Cycle 2 time! Auntie Elizabeth was on Ivy duty for the day and Andrew and I were planning on having a nice meal afterwards as it was an earlier appointment than the previous ones. My appointment was 11.50am and I didn’t actually get into my recliner until 1.45pm. Apparently the pharmacy at Heartlands Hospital had an issue with a filter (no idea what this filter does) so all chemo drugs were delayed and nobody could start their treatment. However, this did mean I was sat in the waiting room with Andrew for a while and I saw the man who’s having the same treatment as me. It gave me the opportunity to have a proper chat and find out how his treatment is going. For the purpose of the blog I’ll call him Bob (I actually forgot to ask his name – I think I felt a bit awkward asking questions but I really wanted to know how he was finding everything so I talked at 100mph and forgot to ask the basics). Bob told me he was on holiday in Cyprus and over the course of the week he had developed orange-sized lumps under both his arms, so big he couldn’t swim in the pool. By the time Bob got home to the UK, he had another 3 lumps in his neck. He was quickly diagnosed with Hodgkins Lymphoma and sent for a PET scan. Paneesha (Bob loves him too) diagnosed him at Stage 4b – this meant Bob had lymphomas on both sides of his body in his neck, chest, armpits, groin. I couldn’t believe how quickly it had happened to him, but then the reason this type of cancer is so treatable is because it’s so aggressive. Bob hasn’t suffered any side effects from the treatment so far and has still got the majority of his hair, he’s now starting cycle 3 and waiting for results from his interim PET scan. Hearing his story and seeing how well he was made me feel happy for him and happy for me. I feel like I have a ‘chemo mate’ and listening to how he knows the lumps have either gone or reduced in size reinforces that this treatment works.
Auntie Alyson looked after Ivy on the second treatment of cycle 2, and initially I had asked her to have Ivy overnight… This came about because it’s half term and The Freemans wanted to spend time with her and it would be a perfect opportunity. Basically I chickened out. I was fine when Mum looked after Ivy overnight before but that was because we were actually out – this time I’d be at home with no real reason to be without her! I had to text Alyson to say my overprotective maternal side had won. This was new to me – I felt bad for letting Alyson down because I know they were looking forward to it, but i don’t think I could sit at home without Ivy! Andrew and I made the most of the babysitters by going to the cinema. We watched Thor and as usual, he was amazing. It’s been an ongoing joke since the first film that I have an unhealthy obsession with him – Chris Hemsworth cheers me up no end, especially when he starts throwing his big hammer around. Pun intended.
When we picked Ivy up, Lee got more than he bargained for and became Anya for a few minutes…. gotta say he pulls it off. I’d like to say that he was itching to get it on but there may have been some gentle persuasion involved! I feel ok about letting my family see me with a shaved head and being honest about my wig-wearing. Being open about it makes it easier for me to deal with. What made me laugh was little Ruby asking me to ‘take my hair off again’ before I left Alyson’s, it was hilarious. While I’m sharing a picture of Lee looking like the bearded lady, I might as well give you a glimpse of my new look (filters work wonders!)
The 2 treatments in cycle 2 were straightforward, similar to the previous ones. There is an issue towards the end of the session though – the last drug (the ‘D’ drug) is known to cause vein pain, and to try and combat this, the drug is put through an IV alongside Glucose. This minimises the vein pain. The last 2 treatments have finished with horrible pain through my IV – when I flagged this up with the nurse the first time, she told me there wasn’t any swelling and the canular was in the right place so offered me a heat pad. Being completely honest, it didn’t help. The only way I can describe it is a burning sensation. Anyway, the drip finished and the IV was removed and the pain instantly stopped. The second time, I had already told the nurse what had happened previously and she explained about the vein pain side effect – she said she’d keep an eye on the pump to make sure the Glucose drip didn’t run out before the chemo. This time around, the pain came when the last flush was put on. I called the nurse over instantly and she turned the rate of flow down and the pain eased. Apparently the chemo was still in the tube and was being pushed through by the flush, so in effect, was entering my vein on it’s own without the Glucose, therefore causing pain. It’s uncomfortable and painful at the time, but the nurses do quickly rectify it, and I suppose if that’s the only concern, I shouldn’t really moan.
I am definitely suffering from hospital fatigue – each treatment gets slightly more annoying and I’m finding myself more fidgety and eager to leave the day unit. Patience is wearing thin, especially when it takes ages to get hooked up. Emotions got the better of me during this last treatment and I got a bit upset; it’s been building for the past week and I’ve been a bit of a grump which makes Andrew a bit of a grump. Talking about it today, I need to tell him when things are getting on top of me, but I don’t like feeling as if I’m moaning. Who wants to live with a moaner?! Physically I feel ok, emotionally I’ve felt a bit vulnerable. Slapping a smile on my face does wonders and stops me succumbing to feeling down, but sometimes the frustration gets the better of me. I’ve got a right to be frustrated and angry but I don’t want it to become an issue for me mentally, hence the jigsaws and colouring 😊.
I’ve got my interim PET scan booked for Friday 3rd November and an appointment with Paneesha to discuss results on Monday 6th November. I can’t see how this is going to be bad news. The dreaded lump in my neck which initially alerted me to this issue has more or less gone. I can’t actually feel it anymore. However, I’m well aware that just because I can’t feel it doesn’t actually mean it’s gone, it may have just decreased in size and the remainder is in a part of my neck that I can’t feel. It must be good though, mustn’t it? We’ll have to wait and see! Like the first scan, I can’t be around Ivy for 8 hours. This time around though I’m not breastfeeding so it’ll be a little easier.
Ivy is now 10 weeks old and had her 8 week injections on 11th October. Auntie Alyson had to come with us because one of the immunisations is taken orally and therefore there’s an airborne risk – with my immunity so low, it’s too risky and I needed Alyson to take Ivy in for me. The 3 of us went into the initial postnatal check. From the initial questions and look of concern on the Doctor’s face, it’s safe to say she was expecting me to be in poor mental and physical health after reading my notes. I answered her questions and said that everything was going well, she was happy with Ivy’s development and also happy with how I was coping. Ivy had her physical checks – she routinely will put weight through her legs and wobble with me holding her, but as soon as the doctor was lifting her up and down, Ivy kept pulling her knees up to her chest on the downward motion. I did the cringe Mum thing and said, ‘Ivy does put weight through her legs at home, I don’t know why she won’t do it.’ I don’t even know if the test was to see if she put her legs down but this weird urge to tell the doctor what she does at home came out of nowhere – I think you just want the doctor to say things like, ‘Oh wow, she’s so advanced’, or, ‘an 8 week old baby has never done that before!’ Is it my competitive nature? God help me on school sports day! Anyway, we left the doctor and sat and waited to be called in by the nurse – injection time! Watching Alyson and Ivy walk off into the room left me feeling helpless, I wanted to be in there and comfort Ivy when the inevitable happened. After a few minutes I heard it – Ivy’s scream. This is rare. As I’ve said before, I think some higher power is looking after us as Ivy is so well behaved, hardly cries and pretty much sleeps through the night, so to hear her screaming made me want to run into the room, scoop her up and smother her with love. Poor little thing, she got through 3 injections and an oral dose. The screaming didn’t last too long and soon they were out and she seemed a lot calmer. Alyson stayed with me for the day as I’d been told not to change nappies or even cuddle. There has to be a realistic approach to this situation – as long as I’m really strict with hygiene i.e. washing hands thoroughly after changing nappies or if there’s someone else around, get them to do it, I don’t think I can actually be unable to cuddle my own daughter. Maybe not smother her in kisses like I sometimes do, but other than that, I just need to be sensible.
I was talking to my sister the other day about feeling tired, and that sometimes I berate myself and think I’m lazy because some days the thought of leaving the house drains me – time Ivy’s feed right, change her, probably change her again, into the car seat, pram in the boot, car seat in the car…. car seat out the car, carry Ivy or set the pram up, negotiate pushing a trolley or carrying a basket… I needed to drop 3 parcels into the post office, what an easy task! However, I literally could not summon the energy to do all of the above so I didn’t. It’s difficult to say whether it’s chemo related or just having a 10 week old, and it’s easy to feel lazy, but I’m getting better at being ok having downtime. Why not make the most of it?!