One year on.

Saturday 11th August

It’s 10pm and I’ve spent the day prepping for Ivy’s birthday and christening tomorrow. I’m now in bed and can’t help but reflect on the past year. Ivy is blissfully unaware of the celebrations that are being planned for, and is fast asleep in her room; Andy is downstairs chilling out by shooting people in Division (computer game for those who are lucky enough not to know what it is). Food done, decorations ready, soft play shapes borrowed from my workplace and packed in the car, dress altered and fake tan applied.

How fast does time go? I’m sure every parent thinks that constantly, but I look at Ivy now and can’t believe how quickly she’s changing and developing. From being able to lie almost across my two hands, to running around the house chasing the cat, I don’t know where the time has gone. I look at Ivy as my guardian angel, the most perfect little girl who came along at my most desperate and scary time. I strongly believe there is a higher power in life – a higher power that tests us and looks after us and makes things happen for a reason.  I feel so proud of Ivy when I see her learning new things and showing off her personality, being cheeky and giving people huge smiles, and it makes me emotional to think she’s oblivious to all the bad in the world and I want it to stay that way. A child’s naivety is so special and something that needs to be kept safe for as long as possible.

We decided to have the christening a little later than normal because of my recovery, and as her birthday fell on a Sunday it seemed like the perfect opportunity to combine the two. We’ve got family and friends coming along and I can’t wait to celebrate – Monsignor McHugh at St George and St Teresa’s Catholic Church is officiating the christening, and as he married Andy and I almost 2 and a half years ago, it’s extra special. It’s just in time, actually, as Monsignor is retiring in September so I’m glad we are doing it now and he can be part of it. Monsignor is such a lovely man and I drove him mad in the weeks leading up the Christening… the last time I saw him he said, ‘as long as you turn up, it’ll be fine’. Other words, chill out Catherine.

As part of Ivy’s decorations, I ordered a banner which you stick a photo on for each month – a fab recommendation from my friend Heather. I spent a lot of time going through photos taken over the past year, trying to choose the best picture to get printed for each month. Looking through the photos was emotional; it’s amazing what you forget in such a short space of time. So many happy photos where I look a complete wreck, but my smile was totally real. Ivy has brought so much joy into my life that it’s completely overshadowed me being ill.

Tuesday 14th August

The last few days have gone by in a blur – a very happy, busy, laughter filled blur. Aside from singing Ivy happy birthday while she munched through her birthday toast, Sunday morning was hectic. We had to decorate the Cricket Club, ready for the guests after the Christening, and I think I underestimated how long it would take. It was fine in the end, and we got to the Church on time to have a chat and say hello to everyone arriving. Monsignor was very chilled and performed a lovely, informal Christening ceremony. Ivy laughed, blew raspberries and shouted her way through the Christening, leaning around my arm to entertain the crowd behind her! It’s probably easier to have a younger baby baptised than it is a 1 year old, but then we wouldn’t have had the laughs and quips from the priest who charismatically replied to some of Ivy’s noises! We chose my two sisters as Godmothers, and Andrew’s close friend Bruce, as Godfather, so I’m sure Ivy will be well looked after… however, I may have to remind Bruce which jokes are appropriate and which aren’t!

The celebrations continued at Moseley Cricket Club and I think everyone enjoyed themselves! I managed to forget candles for the cake but we sang Happy Birthday and Andrew thanked everyone for their kind gifts and for coming along. It was such a good afternoon with all our favourite people in one place, and the amount of cards and gifts Ivy had was overwhelming – THANK YOU to everyone who has spoilt Ivy rotten, she’s a very lucky girl. Ivy smiled all day and loved playing with her family and friends – the soft play was great and kept the kids entertained, as well as the balloons! I can’t remember how many children came up to me to ask if they could have balloons off the tables… so polite! I’d bought big silver balloons in IVY and wanted a pic outside – I dragged Andy and Ivy outside with my sister to take a picture but the ‘V’ managed to untie its string and fly away – there it was, sailing off into the sky. We had to settle with a ‘1’ photo instead. The kids loved sending the ‘I’ and ‘Y’ after it, and shortly after, from the window in the Cricket Club, I saw the ‘1’ flying away!

At this point I need to give a shoutout to my amazing cake-maker friend, Amani from Heronbrook Baking. Amani made the most perfect cake for Ivy – Lemon sponge on the bottom tier, and blackforest for the middle tier with lilac, white and silver decorations. It was AMAZING there was nothing left for us to take home! Check her cakes out on instagram: @amani5

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The day went by in a blur. It’s hard work trying to talk to everyone, and I felt like I didn’t get to have proper conversations with anyone, so apologies for that. By the end of the afternoon, we were all shattered, and managed to drag ourselves home. Comfies on, Ivy out of her dress, and cuddles. Ivy did not want to go to sleep and I ended up having her in bed with me and going to sleep together. I never do that, but I literally didn’t have the energy to put her into the cot so it was a mission through the darkness at 2am putting her back into her own room.

Monday was painful – terrible sleep Sunday night, extremely tired and having to go back to the venue to clear up, and then helping with some family stuff. The day passed in a daze and by 5pm I was good for nothing! I managed a short trip around Morrisons as the cupboards were bare, and Ivy thought it was hilarious to pull things off the shelves when I wasn’t looking. I even saw someone look at me and give me a pitiful smile; one of those faces that says ‘ah, I feel sorry for you’. The fact I hadn’t had a shower, my hair was up on end like I’d been electrocuted and my child was causing havoc seemed to get me sympathy from various passers-by and I just wanted to crawl into a hole. What made me feel better was seeing Andy come in from work looking and feeling exactly the same. We decided to write the night off and lounge – I sent my apologies to netball training (which I felt terrible about because I don’t like to miss it) and literally lay on the sofa. Crawled into bed at 9ish and zonked out. I’d like to say that the early night sorted me out, but I still feel like I’ve been hit by a truck!! Another early night for me tonight and I WILL feel like a new woman tomorrow. I WILL!

On another note, my hair is growing back quicker than I thought! It pretty much looks like I’ve chosen to have this style which is good – it stops the questions or looks that people don’t even realise they give you when you’re minding your own business. I’m really trying to embrace the ‘do’ but I see myself on photos and I just don’t like it. I don’t think I will like it until I can actually do something with it. What’s really annoying, and it’s something I’ve never thought about, is that when you have long hair and don’t want to wash it, you just bung it full of dry shampoo or tie it up – ok, it may not look great but you get away with it. With short hair, I get up in the morning and it looks like some sort of hair monster has attacked me in the night and it’s standing up in all directions. I have to wash it every day otherwise I look like a loon! Who knew that short hair was more work than long hair?! And then there’s the ordeal with product – I’m currently using Andrew’s hair clay, but you need just the right amount… too little and my hair looks like a tennis ball, too much and it turns into a lego helmet. See, very tricky!

It’s my little sister’s hen do this weekend – she has no idea where she’s going and I think the control freak in her is going slightly mental (even though she wouldn’t admit it). It’s been fun winding her up. There’s a few things left to do this week in prep before the ferry/hovercraft/plane/helicopter to our chosen destination on Friday morning – last few bits to pack and then we’re off. CAN’T WAIT. You’re going down Red!

Get your drinking shoes on Elizabeth, you’ll be needing them!

 

Back to the grindstone!

I’ve been umming and ahhing over whether to continue with this blog now that my scan has come back clear. The questions I’ve been asking myself are: Is it just a blog about having cancer? Do people want to still read about the aftermath? Is it important for people to understand about life after cancer? Am I boring people? What else can I write about?

Answering my own questions, I’ve come to the conclusion that I will continue to write blog posts, mainly for my own sanity. I can’t tell you how much it has helped me mentally to document my thoughts and feelings over the past 10 months, and I want to try and keep the momentum up and either maintain, or improve my mental health and wellbeing by doing it. So, apologies if my future posts are not what you find interesting, but hopefully there will be something in there that some people can relate to. But also, having gone through cancer and come out the other side, life is now different. It’s like I’ve got new eyes and am seeing things differently, or have a different perception, or feel differently about things… I don’t really know and I can’t explain it very well so apologies for my lack of eloquence.  Maybe it’s as simple as having a new appreciation for life? Everyone knows they should be grateful for what they have, and I’ve said it many times about my upbringing, being able to stay in education, having choices about what I do with my life etc etc. BUT I don’t think I’ve truly appreciated how lucky I have been to have been healthy, fit and well up until my diagnosis.

The biggest thing that’s happened since my last post is that I’ve gone back to work and Ivy has ventured into the big, wide, world and started nursery. There has been a lot of people asking if I was dreading going back and telling me how much I’ll miss Ivy, and I knew that I would but I still didn’t know what to expect or how I’d feel. I knew I felt ok about it, but the seeds of doubt were creeping in and maybe I hadn’t thought it through properly, but I’d agreed my return date at the start of my leave and I decided to stick to it. Through negotiations with work, nursery, Andrew and Mum, we settled on the weekly routine. I’m still going to be working full time hours but condensed over 4 days – main reason is to keep our income the same in view of how expensive childcare is, but also having a day just me and Ivy! So, I have a Monday off which is great, but then work longer days for the rest of the week. Logistically, it’s perfect. I take Ivy to where she needs to be, and Andy picks her up. It is a long day, and I’m more than ready to come home when the clock strikes 6pm, but it’s working so far which is great. In fact, whilst I obviously miss Ivy, I’m enjoying getting back into work and catching up with what I’ve missed over the last 10 months. The only adjustment that I hadn’t really thought through was that I’d only really be seeing Ivy for 2 hours a day (if I’m lucky) and I’ve found that quite hard, but it makes me look forward to the weekend so much more.

The morning is a regimented operation which is timed to the second – I know when I’ve gone wrong when I’m leaving the house at 7.26 instead of 7.24. It’s amazing what a difference those 2 minutes make! I’m sure all parents reading this can relate and it probably feels like the norm to them, but I’m only 5 weeks in and it amazes me how organised I have to be. Those of you that know me personally could agree that I’m not the most organised person in the world, but my God, how things change! I now batch cook on a Monday to prepare lunches for the week, I pack my bag and Ivy’s bag every night before bed, I get my outfit out for the next day and I lay Ivy’s outfit out with wipes, nappy and her little trainers, ready for her pudgy little feet. So far, so good. Like I say, it seems to be going well at the moment but I’m sure there will be days when all hell breaks loose and carnage ensues.

I haven’t really touched on my physical recovery since I finished treatment – being active pretty much my whole life and not being able to even vacuum a room during my treatment, really took it out of me. I felt frustrated that I couldn’t do the things I’d always done, and really wanted to get back into my sports. I knew that I couldn’t go back straight away, so I gave myself a month after my treatment before I started to think about my physical health. Slowly I started going to the gym, mostly doing cardio and some light body weight stuff. I felt good apart from the additional irritation of my head scarf, and I was slowly increasing the intensity and duration and pushing myself more and more. I went back to netball just in time for summer season, and can’t thank everyone enough for the warm welcome I received. It’s tough coming back into a team when you’ve had so long out – I didn’t want to come back with the expectation I would be getting a lot of court time because I knew it would take me a while to regain my court fitness. However, I’ve played every match apart from one and it’s felt AMAZING. I love netball, I love the team, and I’ve actually really enjoyed being captain (even though I was apprehensive about taking on the role). It’s been the best way to get back into it and I’m grateful for all the support I’ve had. It’s really shown me the power of being part of a club and a team. I was also given ‘the best returning player’ award at the recent 25 year anniversary presentation night, and I blubbed like an idiot. I wasn’t expecting it and it totally overwhelmed me. I’ve even been chosen for the regional team and given the captain’s role which I’m chuffed about! I can’t wait to get back on court at Regional, it’s been so hard to watch from the bench this past year.

In terms of tennis, my partner Keith and I had our first two matches a few Sunday’s ago, first ones in 18 months – the first one ended with a tie-break which we lost, but then we won the second match. Not a bad result! Keith and I have a great relationship on court, and it was great to get back on court with him. We’re both supportive of each other but also take the mick and aren’t scared to tell the other one to ‘up their game’. I’ve been playing in the 2nd team club matches and have got on ok, and have played up for one 1st team match. Again, not quite the standard I used to play but I’m getting there, and the last match was a clean sweep so I’m happy with that!

I’m having to be patient with a lot of things; my hair growth, my fitness, my weight loss… BUT they are all improving and seeing results is keeping me motivated. It’s my sister’s wedding in September and that is driving me to get into shape. I toyed with the idea of hair extensions, just to give me a nice side swept fringe but I had one put in as a trial and it irritated me so much, I couldn’t go through with it. I’m embracing the pixie cut from now and just hoping that the hair vitamins, the coconut oil rubbing and hair masks will help it get to where I want it.

Next post will be in a few days time – one year on from where this all started. It’s my baby girl’s Christening and 1st Birthday this weekend and we’ve got a lovely celebration planned. Fingers crossed the weather holds out and we get to celebrate in the sunshine!

It’s been a while…

So, where do I begin? It’s been a while since my last post and life has been a bit of a rollercoaster to say the least. My D-Day was 17th April and today it’s 14th May.

Going to my scan results appointment on 17th April was tense – I was saying out loud to Andrew that we couldn’t go in there and expect to be told that I was clear. I was trying to prepare myself for the worst even though deep down, using reason and logic, I was convinced it would be good news. My interim scan was clear, I’ve had more treatment, so how could I possibly have lymphomas present in my body? It would not have made logical or clinical sense to have more treatment and have the lymphomas come back. So, I managed to get us there (Mum, Andrew, Ivy and me) in time for the 11 o’clock appointment to find I’d got the time wrong. I must have had the previous appointment in my head as the receptionist told me it was actually scheduled for 3.15pm. However, in true hero style, my consultant made himself available to see us at 12pm. It wasn’t Paneesha this time, we saw Dr Alex Kanelopoulos who we saw at the end of my treatment – the lovely volunteer ladies told me he’d donated a weeks holiday in Greece as a raffle prize which is just incredible. These doctors literally throw everything into their work and I still find it absolutely inspiring.

Anyway, we walked into the office (the first office where I was first shown my initial PET scan) and sat down. Dr Alex brought up my results and I scanned the first few lines of the report and I thought I  was going to pass out… “a small active area…”. Before Dr Alex started talking, I whispered “it’s not clear” and it felt like everything was crashing down around me. Dr Alex read the report and started to explain – all previous sites of lymphoma were gone but a small active area had been flagged up in the other side of my neck. Looking at the scans and comparing the initial one to the most current, there was a big difference. The first was illuminated with neon colours which showed large metabolic areas i.e. lymphomas. The second was more grey with a tiny dot of bright green on the left side of my neck which was this new active area. I was already crying by this point even though Dr Alex was trying to tell me that it was actually good news, and whilst the report said there was a small area for concern, the fact that all previous tumours had gone was amazing. I knew what he was saying, and Mum and Andrew were reiterating it too, but all I had in my head was that this ordeal is not over yet.  I hadn’t prepared myself for this news, I didn’t like it, and I felt like it was just another spanner in the works to test me. I’m tired of being positive and telling people I know it’ll all be fine, and in that moment I just wanted to cry and feel sorry for myself a bit. The plan of action was to have an urgent ultrasound to find out if this active area in my neck was something to worry about. Dr Alex said it could have been flagged up due to an infection or cold, which I did actually have at the time of the scan, but I found it incredibly hard to think and say “I know I’ll be ok”. I didn’t want to be defeatist, or expect the worst, but it’s one of the few times I struggled to see the bright side.

The ultrasound was scheduled for 30th April, and as with all scans I’ve had, you don’t get the results on the same day, you have to come back for another appointment. This appointment was booked for 30th May. This takes me up to the week before I’m due to return to work which I found really hard. I wanted at least 1 week maternity, if not a few, where I could relax and just concentrate on having some fun, with a carefree attitude, rather than this constant cloud hanging over my head. Oh well, it looked like it would be a little while longer until I got more answers and results.

I dropped Ivy off with Mum and took myself to Solihull Hospital – there was absolutely no point in anyone coming with me as they weren’t going to tell me anything and I’d be in and out within a few minutes. Before I knew it, I was lying on the bed with a lovely Dr called Jeff getting ready to scan my neck. I could hear another voice commentating on what was being scanned and I knew there was another doctor in scrubs in the room but I didn’t really understand what his role was or what he was saying. When Jeff stopped scanning, the guy in blue scrubs came over, held my hand and asked if he could call me Catherine – well I thought he said that but it turned out he started calling me Cathy… anyone who knows me knows I don’t like to be called Cathy. However, in this situation I thought I’d allow him to as it looked like he was going to give me some news… “Cathy, we’re going to have a conversation now about your scan so if you could keep your questions until the end, that would be great. Ok?” I said fine, lay back and listened to what they were discussing. At the end of the clinical speak, I was told that whatever was in my neck that had caused concern had vanished, no sign of it whatsoever! I started to cry, then got embarrassed so was blubbing an apology through the tears, at which moment the blue scrubs Dr held my hand and took me over to the computer. He showed me previous and current scans and explained that if my neck had been scanned without a PET scan to cross reference, they would have advised a biopsy. This is because the areas where I had lymphomas have left residual tissue, but these didn’t light up in the PET scan which shows they are not metabolically active… hurray. It was at that moment I asked, “So are you telling me that I don’t have cancer anymore?” And heard the magical response, “From these scans, there is no evidence of lymphoma.” Are there any better words?! I cried and thanked the doctors and left. Driving back to my Mum’s I was in a daze – I hadn’t been prepared for results, but now I’ve had the best result possible. I was cancer free.

It’s amazing how you get used to feeling a certain way – you don’t realise how much something is weighing you down until it’s gone. That big, dark, gloomy shadow that has been following me around has vanished, and for the first time in a long time, I felt happy. Happy that my body is free of this ball and chain, happy I have a few weeks left of maternity to enjoy with my beautiful little girl, happy to see the relief in my family and friends faces, and happy that I can start to look forward and plan without having something niggling in the back of my mind.

In other news, my hair is coming back with avengence! I’ve been amazed at how quickly my eyelashes and brows have come back, and again it’s crazy how quickly you get used to not having them! Head hair looks like a short buzz cut and I’m having to invest in grooming again (I forgot how annoying shaving my legs is). Something that nobody told me was that after chemo it’s quite common for women to get fuzzy faces – I know, gross. In the sunshine, I was starting to get a strange halo around my cheeks and it was awful, it needed to go! I looked into threading and decided that was the way to go… that was until I went to my appointment and the lovely lady told me the hair was too long and threading would really hurt. She wasn’t wrong! I had a little bit taken off and I screamed. No chance in hell was I going to have my whole face threaded!! We opted for wax – I had my bloody face waxed! It was so painful but was over a lot quicker than if I’d gone for threading. I had a lovely rashy face for a few days afterwards but other than that, and a few annoying spots, it looks soooo much better! Apparently if you have it taken off, it doesn’t grow back. The hair follicles just go into overdrive once they’ve repaired themselves which is why it happens – Chemo, the gift that just keeps giving!!

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The aftermath

I’ve definitley been enjoying myself since the results and what better way than to celebrate one of my best friends weddings! Kiera and Joel got married on 5th May in the Cotswolds and it was amazing. I may have missed the hen do in Berlin but I made up for it on the wedding day. John, Kiera’s Dad, got in touch with me and asked me if I’d like to be involved in his speech – of course I said yes but quickly regretted it when I actually realised I’d have to stand up in front of all the guests and speak! I managed to make Kiera cringe a bit (which was my sole purpose) and I loved being involved. The day was brill, the night was great but I can’t remember the last hour or so… too much prosecco! The photos as the night went on proved this with my wig looking slightly worse for wear. Oh well! It helped me decide that from now on I’m embracing the buzz cut as I can’t be bothered with wigs anymore. It’s growing quickly though so hopefully I can start to style it and take advantage of having a haircut I never thought I’d have!

“It’s behind you!”

Have you ever had the feeling that someone is following you? That there are eyes watching your every move? It’s happened to me in the past when I’ve been walking down an alleyway or standing at a train station late at night… It’s an uneasy feeling that makes you feel like all your senses are heightened, and your body is getting ready to spring into action and run for it if needed. That quickened pace, the shallow breathing, the overwhelming anxiety that something bad is going to happen… luckily every time I’ve felt like this, I’ve been completely overreacting and the random guy walking past me who I cower from has no desire to abduct me, just to continue on his merry little way.

This is how it feels to have had cancer.

I’ve been concentrating on getting through the treatments, appointments, side effects and general logistics that go along with the above but what I have only considered in the last few days is that I’ll be living with the fear that it might come back for the rest of my life. Having the ‘it’s not going to happen to me’ attitude means you don’t waste time worrying about something that may never happen, and I’ve got to say, that sounds like bliss. I wish I could believe that and not have the angst between every scan, knowing that I’ve had it once and could well have it again. This comes about because I had my end of treatment scan on 27th March – the scan to hopefully say I’m still in metabolic remission and do not require further treatment (everything is crossed that I hear this news on results day). A couple of days beforehand I realised the apprehension, fear and anxiety wasn’t a one-off – this feeling is going to be a regular thing for the next 5 years. If all scans remain clear, after 5 years I can finally say I’m cured but the fear won’t disappear. I’m now anxious that i’ll always feel anxious… that’s a good puzzle for Mrs Counsellor to figure out! It’s always there, following me and making me feel uneasy. I’ll be watching tv or doing the weekly shop and something will happen which makes the anxiety hit me again like a bus. I suppose it will just be a case of learning to live and deal with these feelings but I don’t think it will ever really go.

Unfortunately my results date has been moved, apparently consultants deserve annual leave too! I now get my results on 17th April which is 3 weeks later than expected. It’s going to be a long wait. The day of the scan I felt ok, and actually my aversion to needles seemed to have improved! The same routine of walking into the PET Centre, having my height and weight taken, being assigned a room and being injected with radioactive glucose was familiar. Due to the nature of the scan, I get to have a mid-morning nap whilst the glucose travels round my system. The lovely guy who injected gave me a choice of music and I opted for Country Classics. I’m sure you know by now that I love a bit of irony, so picture this… me lying on a hospital bed, hooked up to a radioactive I.V. so I can find out whether I am free of cancer, and the track ‘Top of the World’ by Lynn Anderson comes on. Lying there nice and still, contemplating the scan results, I’m suddenly smiling and humming along;

‘I’m on top of the world lookin’ down on creation, And the only explanation I can find,

Is the love that I’ve found ever since you’ve been around, Your love’s put me on top of the world.’

It was a bizarre situation but it made me laugh and reminded me that life will always surprise you – when you think you’re feeling one way, more often than not something will happen to make you do a 180. This song made me grin in a pretty grim situation, so Lynn Anderson, thank you!

Due to being radioactive for 8 hours after the scan, I couldn’t be near Ivy so I decided to treat myself. I took the very rare opportunity to go into Solihull and watch a film at cineworld. I’ve been wanting to see The Greatest Showman for ages and for those of you that know me, know that I’m partial to a cheesy musical film. I can’t help it, they make me happy! I got myself a subway salad, a tall skinny latte with an extra shot and took my seat in the cinema. I had the best couple of hours on my own EVER. The film was amazing and I’ve since bought the soundtrack which obviously Ivy loves too (she literally does not have a choice) and regularly sing and dance round the kitchen. If only life was a musical – I’d be in my element.

I’ve had one counselling session since my last blog and it was actually easier than I thought it would be, and probably more helpful than I expected. There’s something calming about talking to someone who has no idea about you, your family or friends, experiences you’ve had or anything else about your life. There’s no pre conceived ideas about what I should or shouldn’t be feeling, just questions about how and why. One thing that came out of my session was how I don’t know how to respond to people when they call me brave or inspirational. It’s so lovely to hear that people think that of me, but I almost feel like a fraud. In my head I have just done exactly what I’ve been told; have treatment, take medication, book scans, look after myself, rest etc. Nothing about that is inspirational or brave but I understand why people say it. I said it about my Dad, and about my friend Ste. To me they were far braver than I’ve ever been as they were faced with a much tougher hand than I have been dealt. Maybe if I hadn’t had that experience of losing two people very close to me, I’d relish being called brave, but I have had that experience and I can’t even compare what I’ve been through to what they went through. The counsellor said that 70% of people she’s seen that have been through cancer feel the same way – phew! I thought I was the only one.

In other news, Ivy is now 7 months old and is on the move. I need eyes in the back of my head and there have been a few (a lot of) near misses. Ivy is chatting gobbledygook and running around in her walker, climbing up furniture and putting fire coals in her mouth. I’m loving feeling more normal now and I’m glad I can just about keep up with her! I’m back in the gym, playing netball and tennis and generally being more active. I also managed to squeeze a cheeky ski trip in and I loved it! Managed to ski much more than I originally thought and it was so good to be up on the mountains and breathe in all that clean air, it does wonders for your mind. I did suffer a few days after I came back, the tiredness hit me and I had to give myself a bit of a rest, but all in all it was amazing! The diet is going well and I’ve lost 7lbs (it was 9lbs but then Easter happened) so hopefully that will continue. My eyelashes and eyebrows are also coming back which makes a big difference but my head hair seems to be on go-slow. Ivy has still got more hair than I have!

The new normal

It’s a glorious Sunday afternoon (25th Feb) and for the first time in 6 months I can say I don’t have the dread of ‘chemo day’ this week. I have had chemo every other Tuesday since 12th September, but now it’s going to be my first week without the dreaded trip to Ward 19, Heartlands Hospital. It feels amazing. My side effects from the last cycle are slowly disappearing, however, I’ve just had to read my last blog to see where I left you all as Baby + Chemo brain is not a good mix and I have a constant fog where my intelligence used to be (I think I had some anyway). The simplest of things like remembering dates, or a shopping list, or my house keys or what I’ve walked into a room for are becoming more difficult. I’m putting it down to the exhaustion and the lack of concentration I seem to be suffering with but hoping I’ll bounce back once these chemicals are gone! The thought of getting back to some sort of normality is refreshing, scary and slightly overwhelming because I know that I need to adjust to a ‘new normal’, not just return to the Catherine that I was before.

Firstly, I now have a child – a child who is 6 months old already! The maternity leave that I had planned sailed out of the window at the same time as me receiving my diagnosis – this means I have 3 full months of maternity leave left to make the most of before I go back to work in June. I intend to spend time with family and friends who I haven’t spent that much time with, go to baby classes, get outside and enjoy the Spring weather (hopefully the ‘beast from the east’ doesn’t hang around for too long) and mainly slowly get my fitness back on track. It’s worrying that I can’t vacuum a room without sweating, panting and having to sit down… I’ve never felt so unfit in my life.

Secondly, the whole experience of going through chemotherapy has changed the way I think, love and appreciate the people around me. Who knew that a message, phone call or social media contact could make a person feel so supported? Not once have I felt alone and I want to make sure I give that support right back. As I mentioned in an earlier blog, giving someone your time is powerful. At some point, I want to help support people going through similar circumstances – there are amazing volunteers in Ward 19 who shine a little ray of sunshine on what is a pretty dreary day for the patients. Two of these amazing people are Jan and Cath – they are sisters and have been volunteering on Ward 19 for the last year. They laugh, joke and chat away to patients receiving treatment and hand out teas, coffees, biscuits and sandwiches. Around Christmas they decorated their trolley with tinsel, wore reindeer antlers and gave everyone a bit of seasonal joy. They have definitely made my time that little bit easier.

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Cath and Jan

Thirdly, it’s going to be a long road before I can move on from what has been a fairly traumatic 6 months. Processing and dealing with what’s happened doesn’t scare me because I know it will help in the long run, but I know it’s not going to be easy. I’ve applied for the Macmillan Counselling which is offered through Relate and I’ve had my initial appointment. I don’t have any experience with counselling really, and whilst I consider myself the sort of person who can deal with things logically and tend to be quite open with people about how I’m feeling (hence the blog), I actually think I’d be crazy to not take this opportunity. Macmillan funds up to 8 counselling sessions which is amazing, and then I can choose whether to keep going (and pay) or stop. The fact it’s even on offer is incredible and it’s little things like this that is spurring me on to think up fundraising events to support these services which help so many people.

Cycle 6 recap:

All things considered, the last cycle was ok. Cycle 6A, treatment 11, was a long haul. We were kept waiting from 12.45 until 4pm before I was hooked up. Again, this is the result of a lack of chairs in a very busy Ward, with people falling over themselves to be treated. I don’t actually mind waiting, but the issue I have is the anxiety builds up when I’m sat there waiting. We never moan or show frustration to the nurses because they are just doing what they can, but the longer I sit outside the day unit, the more anxious I feel. I touched on the smells and physical sickness that hits me when I walk into the ward before, but sitting and watching others have their chemotherapy treatment is even worse. I try not to watch the needles and the hook ups, but sometimes you’re right there and can’t see anything else. I often wonder what other patients are going through, what support network do they have, why do they come and get treated on their own? There may be very simple answers or it may be more complicated but it reinforces how lucky I am to have never had a single treatment on my own. Andrew has been sat there, watching me go through these treatments and has seen the pain of the needles and the dry heaving from sickness, and I couldn’t be more grateful. The inane conversations, watching Tipping Point or David Dickinson’s Real Deal (hate it), or arguing over a crossword has helped keep me sane over the last 6 months. This treatment saw another vein collapse (I think they are going on strike) so I had to have a second canular in the other hand. Not fun. However, as soon as it was in, I was hooked up and everything else went smoothly. Well that was until ‘Bob’ – (do you remember Bob? The guy who was being treated for Hodgkin’s Lymphoma?) – started to pipe up. I hadn’t seen him for ages and I’d asked the nurse how he had been getting on and she’d reported that he was on the mend and doing well. I was really pleased to see him and he was holding court having a laugh and a joke with the other patients and nurses. It was Bob’s last treatment (real name Anthony) w/c 5th Feb and he’s all clear. He now has no hair, eyebrows or moustache (much like me) and even went into detail about his other body hair and what his anatomy now looks like – I’m not sure the old guy sat opposite appreciated it but it made me, Andrew and the older lady next to him giggle. A bit of lighthearted humour goes down well in a place like that!

Side effects have been getting slightly worse with every treatment but nothing I haven’t been able to handle. Knowing my last chemo treatment was on 13th Feb just kept me going. I popped into Heartlands the day before my last session to have my bloods done but when I arrived for my last ever treatment, I was told that my WBC’s had dropped to 0.2 (all time low) so I had to have another blood test. Unfortunately, the results of the test showed a further drop to 0.1 which could have meant my treatment would be cancelled. ARGH. This was a nightmare – I don’t think I could actually cope not having the last treatment on 13th Feb. That date had been spinning around in my head since September, and now it was here and there was a possibility it wasn’t the end. Fortunately, the nurse got onto the blower to my mate Paneesha who again agreed for me to have treatment, as long as I had the bone marrow injections too. Fine, I can handle the injections as long as I have my last treatment. It was strange to sit in the familiar day unit and know it was my last time. What really made me happy was that the nurse who put my first canular in and talked me through the chemo process, was the nurse who took it out on the last day. Her name is Naomi and she’s amazing. The way she looks after patients and makes us all feel comfortable goes a long way in making a bad day slightly better. I’ll be forever grateful for her care, along with all the other nurses in Ward 19.

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My last clinic review was on Wednesday 21st Feb, and we saw a doctor who was new to us. He had a good read of my notes, asked about side effects and then started talking to me about fertility and when (if we wanted to) we could start trying to conceive. Basically, I have to wait at least a year from now to ensure the baby wouldn’t be affected by the chemicals in my body. I nodded along but in my head I was thinking, ‘hang on a minute mate, I’ve only just had a baby so less of the conception chat’. One thing at a time and all that! The Doctor did talk to me about the possibility of having Radiotherapy. Apparently, Radiotherapy is commonly given to people with ‘bulky’ Hodgkin’s Lymphoma which is obviously what I’ve had – this would be 2-3 weeks of 10 treatments. My heart sank. I don’t want anymore treatment!!!! He did explain though that a recent study from Italy has shown that as long as the scan I’m having in 5 weeks time shows no active lymphoma, I won’t need Radiotherapy. Everyone keep their fingers crossed please! The last scan results were clear so I’m hoping it’ll be the same result for this next scan.

Look Good, Feel Better

During my time going through treatment, I’ve started to follow a few people on Instagram who are going through various cancer experiences. One lady talked about a make-up course (look good feel better) that you can attend if you have had, or have, cancer. It’s a course that acknowledges how ladies may feel during their treatment and tries to help boost their confidence with make up tuition and skin care tips. I called up and booked myself onto one at Solihull Hospital and went along on 21st Feb. It’s completely free of charge which is amazing and they are usually run once a month in hospitals. There were 6 ladies at my session and 3 retired beauticians (all volunteers) who took us through a range of make up tips, from skin care routines to how to draw on eyebrows – this I really needed! We all got a goody bag which was filled with cosmetics, all donated from various brands, and spent 2 hours pampering ourselves. I would recommend this course to anyone going through this – not only was it great to learn how to draw on non-existent eyebrows, but it was also lovely to talk to other women about what they are going through. Despite us having different cancers, different treatments and different prognosis’, we all seemed to be struggling with how we feel about ourselves. I know my confidence has hit an all time low, and it’s difficult to take off my wig and make up, and feel confident looking in the mirror. I don’t recognise the person staring back at me and it’s unnerving. However, make up and wigs give me a boost of confidence so there will not be a non make up day for quite a while. I thought I’d show you all the reality of what I’m faced with everyday, and then the difference some hair and make up can make. I don’t think I need to caption ‘before’ and ‘after’.

On the upside, from this point on, I won’t be losing any more hair and should start growing it back! The doctor said I should have considerable growth within 8 weeks… I’m not sure what considerable means but I’m guessing it’ll be down my back like Rapunzel 🙂

LOST: Has anyone seen my immune system?

Those bloody White Blood Cells (WBCs). They’ve yo-yoed over the last few months, dropping low and then miraculously returning to almost normal, but they haven’t let me down yet… well, until this round of treatment. I was feeling good about starting this round (Round 5, 9th treatment) – dropped Ivy off as normal, stopped for a coffee and walked into the Ward waving hello to a few familiar faces, but when I told them I had arrived, the receptionist told me I needed to have a full blood count done again. I’d only had my bloods done the previous week for my clinic review and they were great (1.3) so I questioned why I needed them done again. Apparently my bloods get sent off and something was wrong with one of my counts, so I had to have them re-tested. So… got a blood ticket, waited over an hour (this is the most frustrating part of the Ward), eventually having it done and returning to my seat in the waiting area outside the day unit. Cutting a long story short, I was told that my chemo had to be cancelled because they were too low, to which I said that I was under strict instructions from Paneesha that I had to have all my treatments when scheduled in order to win this battle. I got referred back to the doctor on the ward at the time and was told I could have my treatment but I’d need the bone marrow boosting injections. NOOOOOOOOOO! I had dreaded this from the start – everything I read told me that your bones ache because they are being stimulated to produce more blood cells than normal and you can feel quite poorly. I was given the choice between a district nurse coming to my house, coming into Heartlands everyday, or letting Andy do it. We chose for Andy to do it.

Andy had given me injections after I had Ivy, something about reducing the risk of clotting. However, this was slightly different which I didn’t realise at the time. I had to take them on Day 5-10 (6 injections in total) and it wasn’t a pre-filled syringe. I had to start them on the Saturday after my Tuesday treatment and I got a shock when we opened the box. The contents were:

1 x vial of powder

1 x MASSIVE needle

1 x smaller needle

1 x pre-filled syringe

1 x instruction pamphlet with 11 steps illustrated

The massive needle had to be put on the pre-filled syringe and then the solution was injected through the rubber lid of the vial. This then had to be shaken to ensure the powder dissolved into the solution. The solution then needed to be sucked back up from the vial into the syringe. The needles had to be swapped (thank god) and the smaller needle was put on. Like an expert, the syringe needs to be tapped and air bubbles squeezed out. Once ready, it’s then injected below the belly button into a pinch of flesh at 45 degrees. This whole process made me freak out – I didn’t want them, I’d had an awful week after treatment and making up this syringe pushed me over the edge. My hands went over my face and I stood in the middle of the living room and cried. Andrew calmed me down and then did the injection for me and I hardly felt it – a lot of drama for no reason! The whole thing just got to me – so close to the end but still being thrown obstacles to get over. Anyway, I’ve finished the injections and had my bloods done today in preparation for treatment tomorrow (2nd treatment in cycle 5), so I’m hoping tomorrow will go smoothly! My bones didn’t hurt too much but I could feel twinges up and down my spine, almost like pulled muscles. They didn’t last long though so they weren’t as bad as I expected!!

I mentioned that the week after treatment wasn’t great – that was a bit of an understatement. I felt terrible. It’s the first time I’ve actually had to stay in bed the whole day because of how bad I felt. Whether it was the nausea or the extreme fatigue, I just couldn’t move. Every day after, I felt a little better, but it literally wiped me out for almost a week. There is a cumulative effect with treatment and I’m under no illusion that the last 3 treatments are going to be tough – I just need to focus on getting through them and coming out the other side. It doesn’t help when treatment day doesn’t go quite to plan. We had the issue with the bone marrow injections, but there was also a bit of an incident getting the canular into my hand. I don’t want to moan about the nurse, and it may well be my veins, but I  became a pin cushion for a good 15 minutes. The attempts to get the needle into the back of my left hand left me swearing and in pain. We’d already had to wait to get the bloods done and then my treatment hadn’t been sent from the pharmacy, so this was the icing on the cake. With my anxiety around needles getting worse by the day, this situation made me want to get up and run away. I actually contemplated it for a split second before I came to my senses… If i ran do you think the nurses would chase me? If they did chase me they’d definitely be able to catch me, my fitness isn’t what it once was!

There is an irony with my situation in that right now, in this moment, I’m sat at the computer without my wig and make up, and I look ill. Yes I’m still undergoing treatment even though I’ve been told I’m in remission, however my body looks like it’s nowhere near! I also feel the worst I have throughout this whole process so I look ill and feel ill, yet I’m not technically ill. Isn’t it ironic?

I’m following another blog by a 20 year old lady who has also gone through treatment for Hodgkins Lymphoma (meggderbyshire). When I read it the other day, I could totally empathise with some of the things she was saying, the biggest being the associations I’ve developed with the hospital. The main one is the smell – it makes me feel physically sick. The hand steriliser, the corridors, the day unit with the faint whiff of chemo drugs… even today going in there to have my bloods done before treatment tomorrow has knocked me for six. I wonder if that will ever go? And if so, how long will it take? At least when I was pregnant I knew it’d go after 12 weeks (and it did on the dot) but this is getting stronger and I don’t think it’ll ever go! I had to tell my Mum not to take offence because she cooked a fish pie on the evening of one of my treatments, and it was one that I felt really sick after, so I now associate fish pie with feeling sick. It’s rubbish though because I’ve always loved fish pie… will I ever be able to eat it again??

Thanks everyone for reading these posts, I know they can be lengthy and not always a ray of sunshine, but it does mean a lot that people are interested. If anything, I hope it gives an insight into what treatment can entail so even if it’s a bit of awareness, that’s good for me! Roll on treatment tomorrow, then there’s only 2 left to go!!!

P.S. For those that were wondering about how Slimming World is going, it’s not. Why would I put myself through trying to lose weight when I feel like crap? I’ve lost my hair, that’s enough for now 🙂

And into 2018 we go…

First off, Happy New Year! I hope you’ve all had a lovely time celebrating with family and friends, and for those of you who have had a challenging time, try to step into 2018 with positivity – we can’t always control everything but we can do little things to make life a little bit easier.

I’ve struggled to have a specific topic to write about over the last few weeks – with the build up to Christmas my emotions and thoughts have see-sawed between excitement, thankfulness, sadness and helplessness. Excitement for the hustle and bustle of Christmas, spending time with family and giving out the presents that I’ve hunted for over the last few months as well as celebrating Ivy’s first Christmas; thankfulness that I can relax and enjoy the festive period without dreading scan results or the uncertainty of my future; sadness because I can’t escape the thoughts for other families dealing with this horrible disease and other health issues; and helplessness because none of us are invincible. This last point is especially poignant because my experience over the last 4 months has literally made me realise that we don’t know what’s round the corner and there’s nothing we can do about it. The thought that another one of my family or friends is faced with horrible illnesses or have to go through horrible treatment is sometimes too upsetting to think about. The positive side of this realisation is just to make the most of everything – I’m sometimes too concerned with the thought of things (wouldn’t it be nice to have a hot holiday, go out for expensive meals, wear fabulous clothes, buy an amazing house), but actually the simple things like a good catch up over a cuppa can give you much more joy. TIME – my Mum has said FOREVER that the best thing you can give somebody is your time. Good quality time. I know it sounds cheesy and people reading this may be rolling their eyes thinking I’ve gone soft, but it’s true. This is something that I’m going to try to do more of this year! Especially recently, I’ve been terrible at getting back to people so I just want to apologise for that. I’ve got voicemails and messages that I haven’t responded to and it makes me feel terrible. Sometimes, I just find it hard to stay upbeat and get into conversations (it sounds really stupid now I’m writing it but it’s the truth). I will get better at responding and promise to get back to everyone soon!

*WARNING – RANT AHEAD*

I had my clinic review on 27th December – the standard check up after a treatment cycle. Everyone has one regardless of what you’re being treated for and there is a process you have to follow.

1. Walk into Ward 19 and let reception know you’ve arrived

2. Take a ticket for a blood test (remember the old system at a delicatessen counter where you took paper tickets and waited for your number to be lit up?)

3. Sit in the waiting room until you’re called into the phlebotomy room (blood taking room where you follow an orange line)

4. Return to the waiting room after your blood test

5. Get called by the nurse to be weighed (this is not ideal 2 days after Christmas, especially when she reads it out for everyone to hear)

6. Wait to see the consultant

This system can go quite quickly or very slowly depending on how busy Ward 19 is. On Wednesday 27th December, it was heaving. Bodies everywhere. I’d gone on my own so I stood in the corner trying to stay away from the coughing and spluttering of other patients. I first noticed the person I’m going to moan about (I’m going to call her ‘Rude’) coming into the reception and telling the receptionist “the consultant knows me so I should be seen quickly”. Right…. Sucks to be everyone else, including me, who aren’t as important as you! The receptionist didn’t do anything differently and told her to take a ticket for her blood test. My number got called (number 18) and I followed the orange line like a good girl, took a seat in the phlebotomy room, rolled up my sleeve and waited for the ‘little scratch’. Before I’d been seen, ‘Rude’ walked in with a ticket and said “Hi, I’m next.” The nurse said ok and then asked her number – 28!! The nurse looked at the screen and said they were only on 18 so she’d need to go back into the waiting room and wait her turn. ‘Rude’ didn’t like this response and tried to tell both nurses that she needed it done now and the consultant knew her situation and had said it was fine – I was sat witnessing this thinking ‘Why do you think you are so much more important than any other patient in this ward?!” It was making me angry. Fortunately the nurse told her where to go and she left to go back into the waiting room. My appointment had been scheduled for 11 – it was now 12.15 and I still hadn’t seen the consultant. I was a bit annoyed and had asked the weighing nurse how long the wait was, to be told that my bloods hadn’t been analysed, something about them being missed. Oh well, not ideal but I was certainly not going to kick off about it. So i was now sat in the corridor outside the consultants rooms waiting for my bloods to be analysed and watched ‘Rude’ approach the weighing nurse; “I need to see Paneesha or Alex next – they’ve said”. The nurse explained she couldn’t put her notes before anyone else’s and there hadn’t been a specific request for her to be seen quickly. Again, this didn’t go down well at all and ‘Rude’ started to huff and puff. She was relentless and literally standing next to the nurse whilst she was weighing other patients and hassling other nurses to try and be seen. In the end one of the consultants saw her because she was making such a fuss. After her appointment (I was still sitting waiting for my appointment), the consultant basically had a go at the weighing nurse for letting ‘Rude’ push in! It wasn’t a proper telling off but more of a ‘you should know better’. The fact the consultant was saying it told me that ‘Rude’ did not have any special dispensation for quicker appointments and I couldn’t believe how she had acted. It was just after Christmas, not one person in that Ward wanted to be there so why did she think she was so much more important – her sheer audacity to push in front of other people and get seen quicker made my blood boil. I thought us British were renowned for knowing how to queue… obviously that lesson hadn’t been taught to ‘Rude’. Everyone in that Ward probably has the right to rant and rave with what they are facing, but surely there should be some sort of comradeship between us all.

Anyway, queuing rant over.

As I write this it’s New Year’s Day (9pm ish). I’ve been away for a few days with Andrew and Ivy after the busy festive period. We’ve had a lovely Christmas spending time with our families but we were really looking forward to a few days to ourselves and it was also our 2nd Wedding Anniversary on 31st December so it was a good excuse to treat ourselves. The last few months have taken a toll on us and a bit of escapism was exactly what we needed. We booked a cottage in the middle of the Northumberland National Park and relaxed. A hot tub, open fire, full fridge and plush dressing gowns – what more could we ask for? We spent the first couple of days doing absolutely nothing, it was wonderful, and then ventured out and about to see Bamburgh Castle and Hadrian’s Wall. It was a good time for us both to reflect on the past few months and how we were feeling – one thing we talked about was our best and worst parts of the whole ‘cancer’ experience. We both had completely different ones which surprised me. I won’t share Andrew’s but I’m happy to share mine…

Worst: The appointment with the Haematologist at Solihull Hospital. It was the first time I actually got told what was ahead of me. Don’t get me wrong, the diagnosis was awful, something I’ll probably never get over, but this appointment was real. I was being told what I would be going through and the effect it might have. It was the first time all the things I’d read about Hodgkins Lymphoma were being cemented into my brain – the good prognosis, the need for chemotherapy, the side effects of treatment, the practicalities of everyday life and the risk of infection, not to mention the risk of infertility and early menopause… I remember sitting there thinking ‘This is real.” And it was then that I uncontrollably cried for the rest of the day – I had been holding it in and trying to be positive, but it just got too much.

Best: Meeting Paneesha. I believed from the first moment I met him that he was going to do everything in his power to help me. His demeanour, his kind manner, his clear and concise language and his total confidence that I was going to get over the disease made me believe I could. I feel so lucky to be one of his patients. When I was there on 27th Dec, Paneesha came out into the waiting room as he always does (no other consultants do this) and acknowledged his patients – solid handshake, warm smile… something that tells me he knows who I am and he cares. Obviously the clear scan result was a particular highlight but I needed the right mindset to get through this process and that’s what Paneesha gave me. I’ll be forever grateful.

I have treatment tomorrow which I’m dreading but its the start of Cycle 5 which means the end is in sight!!!

Ivy is still being sickeningly good – still sleeping well, growing fast and smiling all the time. I keep thinking she’s going to turn into a little devil but it hasn’t happened yet… maybe when she’s cutting teeth? There’s a lot of dribble and chewing going on at the moment so that is only round the corner. A wooden spoon came in handy – who needs teething rings?! Wish us luck!

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