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!!
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.