22. 6th September - 26th September 2021 - Cycle 5

Approaching Cycle 5 and I find myself in a strange mind set. I’m not exactly anxious or worried but I do feel uneasy and I’m really not sure why. Maybe it’s because I’m coming to the end of my chemo and the next stage of my treatment is in the planning stage which in itself is scary. I’m just generally feeling ‘bleugh’ and to be totally honest, I have just had enough. I’m struggling to see an end to it all. How will I ever be ready to return to work, I can’t even fit into my uniform! How can I start living normally when I look like this? The sensible part of my brain knows that I will be ok eventually but it is all playing on my mind - there is so much rubbish swirling around in my head and I am feeling a bit low.

I have my telephone consultation with an Advanced Nurse Practitioner and she tells me my bloods are good, my neutrophils are 1.53 so slightly better than last time - and I am given the all clear to have Cycle 5 tomorrow.

I rock up to the treatment centre and have the usual checks - and once again my weight has increased - I laugh it off with the HCA but really it is cutting me to the quick and hurts a lot. I have a (very basic) treadmill arriving in the next few days and I’m hoping I’ll be well enough to use it often to try to get fitter and to try to drop some of my extra weight. Charlie, my PT, has said I can’t start training again until I can manage 10000 steps a day so that is my focus. It seems a very long way off at this moment but I will get there eventually!

I am called through to the treatment area and use the arm warmer to help plump up my veins before cannulation is attempted. Luckily only 2 attempts are made and I am ready to go. The Trastuzumab is always given first and I have to say it is always pretty painless as long as the nurse does it very slowly - it can sting if not. It can take up to 10 minutes to complete and I am then hooked up to the drip and the Docetaxel takes about an hour to go through. It all passes without issue and before I know it I’m on my way home again.

All the staff I deal with in the MacMillan Centre are very friendly and helpful, and I do speak to them about my concerns every time and they are extremely helpful and understanding. They have suggested that I pop into the MacMillan Help Centre, just next door as they can arrange counselling and have so much advice to help you through when feeling anxious or scared. I haven’t actually done this as I don’t think it is for me, I have a great support network and am coping ok - but please do be aware that so much help is available to you - you are never alone on this journey.

Day 2 is not too bad and I make the huge step of doing my family update video without a scarf on. My hair is really weird - I have none on the sides, long strands on the top and the back was almost bald but now appears to be growing back - it looks and feels like baby hair but is redder than it was - so strange! Only my immediate family have seen me without some kind of headcovering so it’s quite a moment for me. I send a pre video text to warn them all as I think it can be quite shocking to see initially but, obviously, no one cared - and I receive lots of messages back saying how beautiful I look. I absolutely don’t and I totally don’t believe any of them actually think I do, but I appreciate their love and support nonetheless. Only T admits I look rough and this makes me laugh a lot - you have to love your best friend - and I do!

My treadmill arrived yesterday and I actually manage a 20 minute walk, not fast, but it made me feel really good, getting my heart pumping and legs moving. I probably won’t manage much more over the next week or so but I’m so happy to have done it today.

Days 3 to 6 are not great - I’m totally exhausted and keep nodding off. My joints are sore, I’m moving around like a little old lady, my face has the usual steroidy puff and glow, my tummy is sore and swollen and my mouth is hideous. Mum went on a little tour of Tesco to try to find things to tantalise my taste buds as everything tastes so awful. It wasn’t a great success but the fresh pineapple is good and ice cream seems to work too so I’m not starving - although that would help the weight situation!

I start to slowly improve over the next few days and manage a couple of sessions on the treadmill, just 15 minutes - my plan was to do 3 x 20 minute sessions a day but that is a complete impossibility. Each session exhausts me but it still feels good to be doing them - and every little bit helps me to move forward with my recovery.

I also feel well enough to start this blog which is a real challenge for me, it’s not something I’ve ever done before, but hopefully it will help those who need it.

Day 10 and I am feeling a lot better and Sophie insists that I leave the house. I really don’t like doing that looking like I do but she bullies me into it and takes me over to the lakes. We sit under the trees for an hour, eating fruit and chatting. It was really lovely and I’m really glad we went.

Day 14 and I have a telephone consultation with the Radiotherapy Consultant who is really lovely. He talks me through all the possible side effects, which I have detailed previously and I express my concern regarding my risk of a severe skin reaction. I explain that I am a redhead and also on Hydroxychloroquine for my RA, both of which make my skin more sensitive to the sun. He reassures me that he has seen black skin react badly and the palest white skin have no reaction at all. He says it is rare to have a severe reaction and there is no way to determine who may have one as it is all down to individual genes. He confirms that treatment wouldn’t start until the beginning of November as I need to recover from my final chemo session first. He said I had a choice of having my treatment over 5 consecutive days at a slightly higher dose, or over 10-15 consecutive days at a lower dose. He explained that research had shown that there are slightly better outcomes for the 5 day treatment but the choice is entirely up to me. I opt for the 5 day course as it is much easier to only travel to Addenbrookes for 5 days! I will receive an appointment to attend the hospital for a planning CT scan within the next couple of weeks and he ends the call reassuring me that all will be well.

On Day 16 I go for my blood and Covid tests ready for Cycle 6 and on Day 17 I have my Covid Booster. Whilst I was very happy to have it and feel very blessed that it is available, it has made me feel dreadful. I had no problems with the first 2 doses but this one has hit with a vengeance. I feel really achy and fluey, my joints are even more sore than usual and I am struggling to even move off the sofa. I have a visit from 2 good friends D and J in the afternoon which gives me a big boost, we laugh a lot and it’s nice to just feel a bit normal.

I feel much better the next day but am still struggling with tiredness and have not managed any more walking on my treadmill. I really want to get on it and I have every intention to do it everyday, but when it comes down to it I just can’t. My joints are so sore and I’m just perpetually, overwhelmingly tired and I just can not do it. I try not to worry or care too much but it is annoying! And life carries on.