Summer fun, exhaustion and magical progress

Another month down and whilst still as intense this time instead of sickness it’s been jam packed with summer crazy season adventures squeezed into every last spare minute between treatment, medical logistics and scans. 

In the last 6 weeks alone I have been on a beautiful family holiday to Spain, had a weekend away with friends in Norfolk, a girl’s trip to Margate, a day filming for a short documentary (I am only a small part in it), attended Glastonbury festival where in total I walked 35 miles across 4 days alongside dancing like, well, a giant wombat on the Other Stage in front of 10’s of thousands of people in a ginormous costume, attended the incredible Nordoff Robins O2 Silver Clef Awards raising some very worthwhile money for this life changing music therapy charity and sung my heart out with girlfriends at the Lionel Richie and Stevie Wonder gig in Hyde Park. 

This was all in addition to various medical appointments and tests including going to Germany twice for my immunotherapy treatment, completing another round of chemo, wearing and having to change my Optune device every 3-5 days, having another 3 hour neuropsychological exam and my latest 3 month MRI scan. Oh and trying to remember to breath. Ooof.

Most importantly out of all of that my MRI results came back two days ago on Thursday. 

Like every scan so far the lead up was really tough. I was positive and even saying I was looking forward to it but at first subconsciously and then more overtly the anxiety began to build up more and more as the day drew closer. 

Darkness would creep in and tell me at times when I felt stressed, forgetful and emotional that it was because the cancer might be growing rather than it being down to my busy hectic life and generally everything I’m going through.

On Thursday however there was an immense wave of pure relief and happiness when my Oncologist told me that my scan showed absolutely zero cancer growth. Not only that but the abnormalities on the scan which can be anything from scarring from the surgery, radiotherapy effects and cancer cells themselves have actually reduced slightly. This is obviously just the best news although *a word of excitement warning*, unfortunately even our most modern MRI scanners can’t tell the difference between these abnormalities so the most likely explanation is a reduction in the scarring and radiotherapy effects. Seeming however as they can’t even see the remains of the tumour on the scan we can always dream that it could be that which really would be a miracle.

I was also told on Thursday that my platelet count was very low which isn’t great but they know what’s caused it and therefore how to fix it. Low platelets make you bleed easier and they also make you feel wiped out so conversely I’m relieved that the utter exhaustion I’ve been feeling the last few weeks hasn’t solely been caused by overdoing it and I can hopefully get back to some usual energy levels very soon. 

The cause of the drop was my last chemo dose being put just a little too high for my body to cope with so the solution of waiting a week or so until it’s at acceptable levels again and then dropping back to a slightly lower dose sounds fine, fingers crossed. 

I should then be able to see if I can find the perfect balance between living and loving ‘normal’ life while still undergoing treatment and not being overly exhausted in this phase of my journey.

These past weeks have been immense fun and my soul definitely needed it but regardless of my platelets being low I’ve had to have a word with myself about having a little more rest and downtime. If you know me, I have forever found this balance so hard to achieve so let’s wait and see.

It’s also been an adjustment getting used to going to these social events as (in some ways) a completely different person.

Glastonbury Festival is the perfect example. Since 2007 I have gone every year it’s been on apart from the year Lolita was born. The memories I have from there are some of my favourites. They see me growing from a young adult with hardly any responsibilities apart from solely trying to extract the most amount of fun one can possibly have at a huge mud bath to a sober mother who aside from fighting the biggest battle of her life, main priorities were to spend as much time as humanly possible with people I love, appreciate every bit of that glorious sunshine on my face and the healing therapies on my tired body, watch as many bands as my feet would carry me to and finally to dance and sing to the greatest music with my tribe right beside me.

Both types of experiences, whilst totally different have been magical and still make me say without a shadow of a doubt that it’s the best music festival in the world however you attend. But I will be totally honest and admit that taking away being able to go with very little cares apart from how I’m going to make it to bed will I’m sure always hold a tinge of sadness for me. So if you’re in that position please bask in that fun and don’t give yourself a hard time if you’re feeling it after. Make those memories that you can then draw upon another day when you might need to close your eyes, remember and laugh at the silliness of it all.

Similarly, this is exactly what’s got me through the moments of tired questioning. Wondering whether I should still be going on all these adventures that make me feel alive, allowing me to still create memories and be happy whilst Klootzak Vader is still lying inside me, however quietly, happy to show his masked face only after with the tiredness that follows.

The solution obviously goes back to finding that balance and adjustment and like every other person on the planet but now even more so, I can’t tip the scales too much. I’ve had to and am continuing to really listen to my body and mind to understand what I am capable of. I’ve also realised I need to make sure I get even the smallest amount of total peace to myself every single day. 

This has meant learning to say no more, not all the time but when I know the effect it might have not just on me but those closest to me too. It’s also meant fully accepting some hard truths about how I’m not as physically strong and able as I used to be and how that makes me feel. 

The last point has been by far the hardest but the most helpful. Letting myself be angry, even screaming and punching pillows at times has helped released something I wasn’t even aware was subtly building up. Accepting and owning it however has brought back in more light, love and calm. 

It’s still ongoing work and maybe forever will be but I’m learning and finding my feet in this intense treatment world which like any big change is a little bumpy at the start but at least we know it’s working and definitely all worth it and that in itself is the biggest boost I need.

• 

• 

• 

• 

• 

• 

• 

•