“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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Stylist, anyone?

Let’s start positively (this is a happier post than the previous moan!)… I’m now halfway through my treatment and have only got 3 cycles left. That means 6 more chemotherapy days until I’m done. I know I can do it because I’ve already done it, so onwards and upwards and let the countdown begin – roll on 13th February. It’s not that far away! Since the last post I definitely feel better; less emotional, less down and much less stressed with the whole thing. I haven’t been doing much other than looking after Ivy, going to appointments and seeing family, and I think taking some time to not rush around has really helped. Saying that, I do feel like I’m neglecting my friends a bit – sorry if you’re one of them – but I’ll make it up to all of you when this is over. Prosecco all round! The whole ‘hibernation’ thing that I’m doing is mostly to stop me picking up colds or bugs and I know they are rife at this time of year. My bloods dropped to an all time low of 0.42 last week which scared me a little – it put me in the neutropenic category which means I basically have no immune system. However, at my clinic review last Wednesday they had risen to an all time high of 1.42 – what a difference a week can make. It’s strange how much they can change in a week and the Doctor couldn’t really offer an explanation as to why it happens like that. It might be a delayed reaction from the chemo, I may have picked up a small infection… who knows! Main thing is that I managed to go on my night out! Literally the only night out I had planned was a Motown Night at Alexandra Theatre on Friday night. Whether I went or not completely depended on my blood results – luckily they were high and I was in a safer position to go. It was such a fun night apart from the gridlock in town – we ended up being 20 mins late for the start and had to abandon our taxi and run. Totally worth it though and it felt good to be out, have a drink, be baby-free and relax.

I’m going to take a slightly different topic for this blog… and this is a serious question to all you Mums out there…

“Is it normal to lose the ability to dress well once you’ve had a baby?”

Some of you are probably thinking, ‘No! I still look great everyday and love all of my clothes’ (good for you – I’m not bitter in the slightest..), but hopefully there are others out there thinking, ‘Oh my God, I totally know what you mean!’ Now, I’ve been thinking about this a lot over the last few weeks and I’ve decided there are a combination of factors that affect this question:

  • The ‘Mum Tum’. For those of you that don’t know what this is, imagine a jelly band around your middle. It’s never been there before, it’s a different texture to when you’ve just put on a bit of weight, and it might have an animal print pattern from where your baby has stretched the hell out of your skin.
  • The ‘Comfort Clothes’. Let’s face it, the days when you don’t have any playdates, appointments or shopping to do, you’ll have your ‘go-to’ comfy clothes. They might be a wonderful mismatch of pjs, hoodies, slippers, ski socks (and in my case a bobble hat).
  • The ‘Breastfeeding Access Clothes’. I only had this issue for 4 weeks, but talking to my friends, this is a high contributor to the lack of style us Mums might have. How good can you look when you have to be able to give your baby access to your chest? Imagine layers, baggy overtops and dribble/milk stained bras.
  • The ‘9 month transition’. We spend 9 months getting our heads round having a baby and go through lots of body changes – where we’ve been trying to be as skinny as possible our whole lives (either in reality or just moaning that we aren’t as skinny as we’d like), we then have to embrace this huge bump growing out of our belly. And then we have a baby and have to get our heads round the belly that’s left over. If you think about it, it’s like psychological warfare.

Anyway, I can’t seem to feel good in any of my clothes at the moment. Finding something to wear for the Motown Night was awful – the timing of Black Friday was great and I ordered the majority of ASOS, New Look, Dorothy Perkins and Topshop (these shops in particular because they all have a tall section) and I ended up keeping a couple of items, but putting on top after top, dress after dress and hating what I looked like was horrible. Add into the mix I have no hair and without make up my eyes look bald too, it just didn’t go that well. Jeans cut right into the jelly belly leaving me with a lovely double roll, dresses cling to the jelly belly instead of skimming over it, and tops don’t sit right because if they fit over the jelly belly, they’re too big on the top!

Picking comfort over style is also a major contributor. Getting up in the night to feed a baby, having a lie in when the baby is, staying in the house a lot more, and not having to make yourself presentable to go to work all result in ‘slob gear’. Whilst I’m writing this I’m wearing Christmas pj bottoms, fluffy slipper boots, a grey hoody and a multicoloured bobble hat. This is probably what I’m going to stay in all day – we’ve got food in, we have nowhere to be, I’ve got treatment tomorrow so today is a rest and relax day. The thought of putting restrictive jeans on and then finding a top which does not show my jelly belly roll is just too much – that can wait until tomorrow when I actually have to leave the house.

Because I have no shame, here is a picture I sent to my sister of my new oxblood, leather look trousers. I like them, they are very comfy and they have a high waist with elasticated sides so the jelly can be tucked in, but where the hell has my bum gone? It’s nowhere to be seen. It’s never been a perfect peach but I definitely used to have one. It now merges into my thighs and it’s more or less a straight line. If anyone has seen my bum, please send it back to me. Ignore the spilt nail polish on my carpet – just another thing I need to sort.

I have been reassured that it’s early days and the jelly will go – to be fair, it is getting better and I think I’m being a little impatient, but where I was planning to get straight back into exercise and sport, my body is too tired to do it. After I finish treatment, I’m going to get back into Netball and Tennis and hopefully this will help in the removal of the pudding-like roll. It is frustrating that I feel like this – I kick myself and tell myself off for being so bothered by my appearance, but it actually does have a mental  and psychological impact on me. I think this is heightened with the other stuff that’s going on like my hairloss etc. – don’t get me wrong, I like dressing up and going out, and when I leave the house I’m fairly happy with what I look like but it’s the preparation that’s a killer, and the time spent routing through my wardrobe. I have had to re-tidy my wardrobe so many times – I pull out shelves, throw stuff on the bed, try on clothes that I know I can’t fit back into yet (just in case I’ve lost 5 stone overnight) before settling on the old faithful outfits that I’m currently living in.

To help with all of this, I’m following the Slimming World diet again. My official weigh-in day is Wednesday morning and last Wednesday I had lost 5lbs. This was more than I thought I would and I’m certainly not going to be losing this much every week but it’s a good start and has made me feel loads better. I will get into that skirt by Christmas!!

Since the last post, I definitely feel better. I’m starting to get my head around what’s happened and what I need to do to get through the remaining treatments. It’s not that far away and I’ve got a few things in the pipeline to look forward to. Christmas is going to be so much fun, especially with it being Ivy’s first Christmas, and we started this weekend by putting up the Christmas tree and decorations. Andrew and Cameron sorted the lights outside the house, and us girls did the tree. I bought us all Christmas pjs to make it an extra cheesy family day… it’s pictures like this that you look back on and wet yourself laughing at!

Ivy has now been to 2 Rhythm Time classes – Elizabeth is taking her as I’m not allowed – and I think she’s enjoying them. Elizabeth said Ivy seems to be more interested in looking at the other babies rather than what Elizabeth is doing and I’m not sure who enjoys the Conga and the Hokey-Cokey more, Elizabeth or Ivy. We also managed to get a playdate with Hannah and the lovely Stanley – trying to get them both to smile for a photo was too hard so here are 2 pictures of each of them smiling:

I also want to say a big thank you for all of your kind words and messages after my last blog. I know it wasnt a happy post but all the comments and messages I recevied were amazing and have really helped. Writing a blog is strange because you have no idea who’s reading it or what people think unless they tell you, so the feedback is really appreciated.

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x x x

Cycle 3 blues

I’m sat here not really knowing where to start. When I was first told that I had Hodgkin’s Lymphoma, I dreamt about being given the all clear and thought it would be the happiest time in my life, with me running through the streets screaming and shouting in ecstasy. It definitely was an AMAZING thing to be told (I restrained myself from running through the streets) and I was beside myself with joy and relief that the treatment had worked, but I can honestly say that the past couple of weeks has probably been the hardest. I’m going to try to explain my thoughts and feelings and need you to know that I’m giving myself a hard time for feeling like this because I know a lot of people would kill for the news I’ve had.

The only way I can explain it is that I’m struggling to process the last 4 months. There has been some major things going on in my life and it’s not until now that I feel like they are getting on top of me. I was diagnosed with hodgkins lymphoma and induced for labour on the same day, I had an assisted delivery which has left me with ongoing postnatal appointments (had my last one on Tuesday thank God), I had to stop breastfeeding at 4 weeks so I could start Chemotherapy, I’ve had MILLIONS of hospital appointments to get my bloods checked, treatment, clinic review, scans…. and have almost completed 3 cycles of chemotherapy resulting in numerous side effects with the main one being losing my hair and having to wear wigs/hats.

Now I’ve been told I’m in remission.

How has this all happened in such a short space of time? Until now I’ve got my head down and ploughed on because that’s what I needed to do – the main focus being to get better. There was a purpose, a goal, something to achieve… but being told that I’m now in remission and I still have 3 cycles of treatment left has just messed with my head. I know why it’s necessary and I know it’s to make sure every last bit has been eradicated from my body, and I’m trying to dig deep and find the strength and motivation to get through the next lot of treatment but it is bloody hard. It’s almost got to the point of me spitting my dummy out and screaming “I want it all to stop”. I’m tired, I’m emotional and I just want it to be over.

The psychological impact is a funny one. I’ve never minded needles or injections, and in fact when I had my wrist op to repair cartilage after a netball injury, I watched the whole thing! The curtain fell down in between me and my open wrist and I told the surgeon and  nurse to leave it down. It’s never bothered me and I’m not a squeamish person. Now, I’m slowly developing anxiety before each needle, whether it’s for my fortnightly  blood test or my chemo. I can feel my body become rigid and my heart beat that little bit faster – I try to act normal and look away or chat to whoever is stabbing me, but it’s difficult. The apprehension of what’s to come seems to be winning at the moment, and I’m desperately trying to combat it. I’ve made the joke to a few nurses now, “you’d think this would get easier” followed by me trying to laugh it off, and every nurse has said the same…. “unfortunately it doesn’t but you just have to carry on”. They know. They know that everyone going through these experiences are struggling whether they admit it or not.

When we were first told that I had Lymphoma at 39 weeks pregnant, we didn’t know which type of lymphoma, the prognosis, the treatment or anything. We heard “cancer” and our worlds started to fall apart. We’d booked to look round a nursery (loads of people had told me that I needed to get on a waiting list or I’d miss out on a place!). This was crazy to me, I hadn’t even given birth and I was already having to choose a nursery to put Baby Aldridge in for when I went back to work. Anyway, we decided to keep the appointment even though we weren’t particularly in the mood to go (funnily enough we drove straight from the nursery to the Women’s Hospital to have a consultation about my pregnancy and the lymphoma) – surreal doesn’t quite cut it. Visiting the nursery was probably the toughest thing I had to do and I didn’t really talk to Andrew or anyone else about it. Looking round a lovely nursery, with children and babies in their appropriately aged rooms, was heartbreaking. Every room had a designated age group, and I couldn’t help but think “will I still be here when the baby is 2, 3, 4??” The thought of not being part of my baby’s life, or leaving Andrew to be a widower and a single parent was almost too much for me to cope with, so I put these fears into a box in my head, locked them away and didn’t open it again. Sitting here now, knowing that I’m going to be ok, has made me think about that poignant visit. It’s unbelievable how life changing these things are, and as I said previously, I’m one of the lucky ones. My heart goes out to families who haven’t had the same results as me and are coping on a daily basis with the knowledge the outcome may be bleak. I’ve been one of those – a daughter who knew her Dad was going to be taken away by cancer. At the time, I had absolutely no idea what was going on in Dad’s head because he just whacked a smile on and got on with things – I’ve always thought of him as a hero, but being on the other side of it now and knowing some of the thoughts and fears he must have been feeling, he truly was an absolute legend. My Dad dealt with a terminal diagnosis from the beginning – my short-lived fear of losing this fight was nothing compared to what Dad went though. I take my hat off to him and to everyone who is having to deal with such a terrible prognosis.

Wow, this is a pretty dreary blog. Apologies if you wanted some light reading. I told Andrew and Mum that I’d started writing this blog and it was depressing and sad, and I was going to go back and re-write it but they both told me not to. The whole point of doing this was to be open and honest, and I wouldn’t be telling the truth if I said everything’s been great since I got my scan results. Truth is, I’m trying to process everything and it’s going to take some time.

In other news, Macmillan released 4 short videos on how to deal with hair loss. They are brilliant. I sat and watched them and picked up some tips. There’s one on how to tie a head scarf – I’m sorry but it’s just not for me. I have tried the scarf look but it’s not a winner – I’m opting for winter beanies and wigs. Another one showed a make up artist helping a lady re-apply eyebrows and create the illusion of lashes, and this is the video I wanted. Whilst I still have both, they are definitely thinning and I want to be prepared in case I lose the lot. In hindsight, I should have had micro-blading done before I started my treatment, but it’s too late now and I’m not allowed to have it done until I’ve finished. It’s been an ongoing joke between Andrew and I that he’s not allowed to touch my eyebrows because he’ll rub them off my face (we tend to play fight a bit and with me wearing hats he sometimes pulls them down over my face and then I’ll start screaming “Stop it! Think of the eyebrows!”) Is it weird that we playfight? Anyway, I went out and invested in some pencils to help with the thinning eyebrows and eyelashes… I bought an eyebrow sculpting pencil which is slightly more waxy than a normal eyebrow pencil. It works really well on its own or with powder over the top to give a more dramatic look and the angled edge gives a more precise finish. I also replaced my dried out liquid eyeliner and bought a brown eye pencil. Usually I’d always wear black, but brown gives a slightly softer feel so if I’m having a pale day, it doesn’t look as harsh. This is Macmillan’s YouTube channel and it has loads of videos that people may find helpful!

I also bought a new wig – I like to call her Anya 2. I didn’t want to wear Anya 1 every time I went out as it wouldn’t last that long, so I went for a shorter style. The shorter the wig, the longer it lasts as it doesn’t gather friction from clothes. When I first got told I’d be losing my hair, someone recommended Amazon for wigs…. I read the message and started laughing, “As if I’d buy a wig from Amazon!” More fool me! This was a bargain at £14.99 and I love it. It’s an easy ‘throw-on’ wig that actually looks almost as good as Anya.

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Short hair, don’t care!

As part of ‘operation build my confidence’, I am starting slimming world again. This jelly band around my middle doesn’t seem to be shifting. I’m back on the slimming world bandwagon as I know it works for me, and I’m buying a 6 week countdown to kickstart me before Christmas – first weigh in on Tuesday. Whilst I can’t exercise how I want to, food has to be my main focus. Back to counting syns and curbing the fatty (but delicious) foods! I ordered a lovely short skirt that I wanted to wear last weekend and it was way too tight. Instead of sending it back, it’s hanging in my wardrobe as motivation! On maternity pay, I can’t justify any wastage so I WILL be getting into that skirt for Christmas!!

Hopefully the next post will be cheerier – I’ll get thinking up some jokes 🙂 In the meantime, you can find me chilling in my onesie with my girls xx

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Catherine = 1; Cancer = 0

Since my last post it’s been a cocktail of various hospital appointments – where I was moaning of hospital fatigue before, it’s definitely turned up a notch now! Between blood tests and clinic reviews, interim PET scan and results, postnatal appointment at the exotically named endoanal clinic (too much information?) and dermatology consultation for a suspected basal cell carcinoma on my head (much easier to see now without any hair), I can honestly say hospitals are like a second home to me. Not the cosy and relaxing type of home, but the familiar ‘know where everything is’ type of home.

A lot has happened since the last post, and I can’t possibly fit it all in, so I’m going to focus on the most important bit – scan results.

I’ll put it out there quickly – I’ve officially been told I’m in metabolic remission. This means that any lymphomas I had, have now been zapped and no longer exist! I am technically cancer free. Can you believe it? This happened on Monday and I still don’t think I’ve got my head around it yet. This outcome is only after 2 cycles of chemo and whilst I have always been told that the prognosis is good, I never imagined this amazing news so early on.

The whole thing around my interim scan was nerve-wracking. Going back to the PET centre at QE Hospital brought back the horrible feeling I had when I initially visited – the radioactive injection, the claustrophobic scanning machine, and then the results telling me I had various sites of lymphoma. All of these memories aren’t exactly great so I’m sure you can appreciate my apprehension. Whilst I knew that the lump in my neck had reduced, I couldn’t let myself believe it had gone. I was saying to people ‘I can’t feel it but it might be more in the back of my throat’… Self preservation again! When the scan was initially booked, I knew I was seeing Paneesha on Monday 6th November – Mum’s bday! The earliest scan they could give me was Friday 3rd November and there wasn’t any guarantee they’d get the results for the Monday. I annoyed everyone at the PET centre by stressing how important it was for me to get the results by Monday due to me starting cycle 3 on Tuesday 7th November. If the scan result showed improvement, Paneesha had promised the ‘B’ drug would be dropped which is toxic to the lungs and heart. I really wanted this to happen. All they said they could do was mark it as urgent and hope that the consultant at the QE would send the report over to Paneesha asap. Monday morning came around and I rang Heartlands to ask if my results had come in – there was no point in us going if they hadn’t. The receptionist told me that there was nothing on the system so she would email Paneesha to see if he still wanted to see us. I was really disappointed. Whilst it’s not the worst thing in the world to have cycle 3 with the ‘B’ drug, I don’t want to be having unecessary treatment if I can help it. Also, I really wanted to know the results. The receptionist rang back within 5 minutes to tell me that Paneesha still wanted to see us at 10am. Mum, Andy, Ivy and Me strolled into Ward 19 to wait for my appointment. Paneesha appeared at 10.30ish with his warming grin and strong handshake and told us he was chasing the results and could we get a coffee whilst he made a few phone calls. I know I go on about Paneesha, but he really is a diamond. He didn’t have to spend his morning getting my results but I know that each and every one of his patients is important to him, and that comes across in everything he does and says. We came back up to Ward 19 and at 11.20 we were welcomed into Paneesha’s office where he explained he didn’t have the PET scan picture but he did have the report…. ‘Excellent news, there is no trace of lymphoma in your body, you are in metabolic remission.’ Those words meant everything. I couldn’t look at Andy or Mum, I was just staring at Paneesha. Then the tears came and relief flooded through me. This was it, this was what we were all hoping for – I’m going to be ok.

The next steps will be to carry on with the remaining 4 cycles (which is annoying) but only with 3 drugs. Then I’ll have a scan 6 weeks after my last treatment (which is 13th Feb) so by April I’ll have completed my treatment and hopefully have a clear scan. Following that, I’ll have check ups every 3 months in the first year, every 4 months in the second year etc… They can’t actually say I’m cured until I’ve passed the 5 year mark but remission is a bloody good start.

I don’t have my interim PET scan image but this picture was from my 1st scan which shows the lymphomas… and now they’re not there!!

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Unfortunately, after treatment on Tuesday, I’ve actually felt the worst so far. I think I need to take some responsibility for it though… I’ve let my hair down (like the pun?) a bit and been out a lot. The biggest issue has been the nausea – I haven’t felt sick like this before and it’s lasted a few days. The only way I can describe it is like morning sickness, which actually improves when I eat. I’ve also felt exhausted and been in bed a lot – again, I think a lot of it is down to a busy few days. On the plus side, my blood count has risen from 0.92 to 1.32 which is great. Normal range is 1.5 – 8 so i’m not that far below!

We celebrated bonfire night at my sister’s on Saturday night then took Mum out for the day on Sunday – both involved drinking. Sunday was fun – we started with brunch at my sister’s and then went to the Electric Cinema in Birmingham to watch Murder on the Orient Express. It was quite good, an easy watch, and even better to have waiter service to your sofa. The day started like this….

It was a good day and we ended up having a lovely roast at 1000 Trades in the Jewellery Quarter – I’d definitely recommend it. Really nice, chilled out atmosphere with soft jazz playing in the background, and the food was amazing!

 

Even though I blame myself for feeling pretty rubbish this week, it’s nice to just be normal for a few days. I really wanted to enjoy Mum’s birthday and have a few drinks, and while I’ve definitely paid for it, times like these are too important. Part of me gets resentful at how my life has had to change, but then I feel guilty when I’m coming out the other side and many people don’t. So, back to being sensible and not drinking, going to bed early and having rest days it is. It was fun while it lasted though.

Going back to the good news we got, I can’t help but feel really strange about the whole thing. It’s almost like it hasn’t even happened. To be diagnosed, treated and be in remission within 4 months is crazy. It’s an amazing outcome and I’m over the moon, but it’s so strange that I’m having trouble processing it. Also, as I’m still having treatment until Feb, it’s not like everything goes back to normal from now. I’m still losing hair – eyebrows and eyelashes are thinning by the day – I’m still suffering with side effects from the chemo, and I’m still at risk of infection. Normality will not resume for quite a long time, so it’s a weird situation to be in. Hearing stories from other patients in the day unit, I know how lucky I am. I just hope that everything continues this well until February and I can stop being stabbed with needles and injected with chemicals. I’ve never had a problem with needles until now. You’d think that you would get used to them, however I’m finding the opposite… my aversion is getting worse and it feels like they hurt a little more every time. This is probably psychological but I can’t help it. It didn’t help when the nurse who was treating me on Tuesday put the needle too far into the vein and it popped out the other side – the pain was horrible. My arm still aches today! It’s all these little things that add to the overall frustration of the whole process. Anyway, how can I possibly moan? I’m cancer-free and I’m bloody lucky.