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!