Coming home from the hospital was lovely. We walked into ‘new baby’ banners put up by my younger sister Elizabeth and we quickly settled in well and it was like we’d had Ivy forever. It’s easy to get overwhelmed but what worked for us was to stay relaxed, go with it and not put pressure on getting everything perfect or in a routine (routines don’t exist for newborns). Word of warning – advice is on tap at this point. By all means listen and be polite (smile and nod and let the words ‘what I would do is….’ wash over you), but ultimately it’s up to you how you feed, what they wear, how you hold them etc. The midwife visits were fine – questions, advice, reassurance – all the things you’d expect. It was actually a good way to get stupid questions out there. I was guilty of saying ‘I know this is a stupid question but….’ however the midwife didn’t point and laugh, instead she answered my questions and helped! Every visit (day 2, 5 and 10) I felt like they were checking I was coping with Ivy and the Lymphoma situation. Can’t blame them really. Maybe my over enthusiastic ‘I’m ok honestly, I feel great’ was a bit too questionable. The truth was that I did actually feel ok – not overwhelmed, not down in the dumps, just relieved that I seemed to be doing an ok job as a Mum! I’d spent 9 months questioning my ability to be a Mum, so was pretty chuffed with myself that I seemed to be nailing it (I was secretly giving my self high 5’s after each successful challenge… changing a nappy, getting Ivy to sleep, buttoning a baby grow correctly, packing the changing bag).
We enjoyed having visitors coming through the door, and Andrew was the best host; making tea, food and offering snacks, leaving me to sit and chat away. The presents, food, cards and well wishes were incredible – I can’t believe how kind and thoughtful all of our family and friends have been. Ivy has been well and truly spoilt. It was a bit like managing a timetable as to who was coming when though and as we don’t have a huge lounge for people to sit in, seats are at a premium! And also, I wanted people to have quality time with Ivy rather than a quick hold before it was someone’s else turn. It was definitely busy but also so lovely to have so many people wanting to come and share our wonderful arrival.
The first week we were home, aside from managing the visitors, everything was pointing to our first Haematology appointment on the Friday. Up until this point, we’d only spoken to consultants and GP’s who weren’t specialists in Lymphoma, so any questions we had couldn’t be answered in as much detail as we wanted. It was frustrating having to wait again (the waiting and not knowing, has been the most mentally tough) but at least we knew we’d get answers on Friday!
We had a bit of time to research Classical Hodgkins Lymphoma and to be honest, it was all pretty positive. The Macmillan website had a really useful video by a consultant, and the main point he stressed was that they treat this disease to cure it. The prognosis is good, the treatment is straightforward, the recurrence is unlikely…. what more could we ask for?! Maybe not to have it in the first place? As I mentioned in my earlier blog ‘Diagnosis and Due Date’, I found it easier to prepare for the worst, but in this case I was hanging all my hopes on everything we’d been reading being true! We just needed confirmation from the haematologist…
My Mum came along with us and waited with Ivy while Andrew and I went in to meet Dr Ewing, a specialist consultant in Haematology and Lymphoma. It was great taking Ivy with us as it gave the nurses and Doctors something else to talk about, rather than going straight in with the ‘cancer’ chat. The appointment with Dr Ewing confirmed what we’d been reading. It’s fair to say that this was the most emotional appointment we’d had – the relief of hearing that everything is ‘probably’ going to be ok (I don’t think anyone would guarantee it 100% with people getting sued left, right and centre these days) made me break down. I couldn’t stop crying. There it was – an actual specialist is telling me “out of all the cancers you can get, this is probably one of the best”. Is it strange to say that I actually feel lucky? Having experienced some very close losses through cancer, and to say that having it myself scared the s*** out of me is an understatement, but to sit and hear that they can (and will!) do something to take it away was like my fairy godmother granting me all the wishes I could ever dream of. Dr Ewing told me I was going to lose my hair, that there is a risk of infertility, that the treatment would most likely be 6 months… (I’m going to do a separate blog about the hair loss thing – it’s got to me from day one. For something so temporary, the emotional impact it’s had on me has been huge and I’d like to go into it in a bit more detail. I don’t think anyone can actually understand how it feels until you are faced with it, and people saying ‘it’s only hair’ or ‘it’ll grow back’ doesn’t seem to make any difference.)
Next step was to have a PET scan to understand if the Lymphoma had spread anywhere else. This was more as a measure for the Doctors rather than a prescription for my treatment as any stage of Hodgkin’s is treated exactly the same with the same prognosis. The hardest bit about the scan was that I had to be injected with radioactive glucose which meant I couldn’t breastfeed Ivy for 8 hours afterwards, or be within 6ft of her (I had visions of her mutating and growing another arm and maybe joining the X-Men). Again, focusing on the positive, I had a Friday night to myself in my bedroom with crap tv and an undisturbed sleep while Andrew took on the baby duties.
So, we’re now at 6th September and I’ve got my first appointment with the Haematologist at Heartlands Hospital where I’ll be having all of my treatments and future appointments. Ward 19 in Heartlands Hospital is now my treatment home for the next 6 months. It’s a typical clinical ward but my God it’s busy – long queues waiting for blood tests, people waiting to see a consultant or the ‘wig’ lady, Tanya, or others coming in to get advice from the nurse specialists about side effects or other chemo related concerns. Mum and I were taken into a consultation room and was introduced to Paneesha (I can’t remember his formal Doctor name so we’ll just go with Paneesha), our Haematology consultant. He was bright, cheery and quite amusing, making a fuss of Ivy (see, a great distraction from the ‘cancer’) and asking us to take a seat. The first thing Paneesha asked was whether we’d had the results from the PET scan. No, we hadn’t. Paneesha pulled up the scan picture (which was basically an outline of my body with various grey bits everywhere) and said ‘the grey masses are Lymphomas’. Now, i was staring at the screen thinking ‘F***ING HELL, THEY ARE EVERYWHERE’ while Paneesha proceeded to talk about something else – I didn’t hear him. I was too busy looking at my riddled body. I couldn’t face turning round and looking at my Mum for fear that I’d start crying, or she’d start crying – I felt like running out of the room! When Paneesha finished talking (God knows what he was saying), I said (trying to keep my composure as best i could), ‘Sorry, can i just ask you to point to where the lymphomas are please? I’m a bit confused.’ Paneesha then said cheerily, ‘yes of course’ and circled my neck area and then my chest area, and then stopped. I looked at him and said ‘So the other grey areas that are all over my body aren’t lymphoma’s?’ and he said breezily ‘Oh no – this is your bladder, these are your kidneys, this is your stomach, these are your lymph nodes…’ OH. MY. GOD. Even though the prognosis would have been the same, the thought of it being so advanced scared me – the relief (and blood) flooded into my body and I took a deep breath. Paneesha graded me at Stage 2a ‘bulky’ Classical Hodgkins Disease. The ‘bulky’ part was added because the lump in my neck is larger than 7cm – I do find it amusing that I’ve spent my whole life being taller (and bigger) than most people, so having ‘bulky’ attached to my cancer is kind of apt.
The plan – 6 cycles of ABVD Chemotherapy starting on 12th September. Each cycle consists of 2 treatments every other week, so until February 2018, I’ll be having it every other Tuesday. I’ll have a scan after the first 2 cycles and find out the result on 6th November – Mum’s birthday. They can’t possibly give me bad news on Mum’s birthday! If the scan shows improvement, they will drop one of the drugs and continue for the remaining 4 cycles. If it doesn’t show improvement, they will put me onto a stronger treatment plan with more monitoring scans.
This appointment was a breakthrough for me. It made me feel like I had a plan and all I had to do was adhere to it and get through it – February isn’t that far away and I could see that light at the end of the tunnel beaming at me!! Bring. It. On.