My Story - The Final Installment

Present Day

So I bring you to today, to which absolutely nothing has gone to plan and after just over 2 weeks of feeling this way I'm only just recovering. Lot's of changes in meds, and alot of struggling with the ability to use my physical energy, knowing very well that I need it to boost my mental energy. Even if that just includes walking from one room into another.

It all started several weeks ago when I was put on to Ciprofloaxicin for what was left of a chest infection, just as I was weaning off of my steroids and I was in the middle of cycle 2 for my Capecitabine (oral chemotherapy). I started the antibiotics on the 7th August and on the 10th I woke up with a numb face to the left side of my chin, cheek and lower lip. Cue a phone call to the Treatment Helpline at Velindre I was told to take a trip to A and E at the Gwent and stop my antibiotics as well as my chemo tablets until advised otherwise.

Altogether I had a blood test, ECG, chest X Ray, full obs and everything came back clear. I couldn't help myself but after having 2 full successful cycles on the cape I could see from Dr. Google (I know, I know, but we've all done it!) that I was having a side effect from this new chest infection antibiotic. I also read that it can have long term to permanent nerve damage - which I am still having now, and I'm not coping well with the repeated lip and gum biting.

Safe to say, the Gwent were clueless and after numerous calls to Velindre I was just told to go home and wait for a call from them as to whether to restart my chemo.

Steroids

The 10th of August happened to be my final day on my steroids as well, which is something my team looked at weaning me off of as it had been some months since radiotherapy had ended and it's not a long term fix for anything. I was also looking forward to it ending as they've caused me to put on so much weight.

It all turned out to be very bad timing. I ended the steroids on the Monday and by the Wednesday I could not open my eyes. I spent about three days in bed just wanting to sleep the whole time. This took me back to May where I thought this was the end. And I could tell my family were thinking it too. Nothing could hide the worry on their faces.

One quick call to my hospice nurse and the treatment helpline once again, they made the decision to put me straight back on the steroids and review it at my next clinic appointment for chemo cycle number 4. I have my bloods and clinic appointment tomorrow, and I'm due to start the next cycle this Saturday.

Normal

Now I know I have to accept that my normal is not your 'average normal' because there is no consistency in my life, but it's still nice for me to be treated as normal as possibly by others. I know people mean well - and it generally is those closest to you - but I'm also finding that I'm now noticing being treated differently. As if others have a feeling at I'm at death's door and when you're trying to get through the day so you can see your children - which I actually haven't been able to in days - it's not very supportive or reassuring.

Yes, I'm aware I'm fighting against a disease to which I will lose, but for now I'm doing everything I can to assure I stay here.

Max is starting school next week and I'm nervous as shit about it. So nervous that at this stage I think I'll need a wheelchair just to get there. But I will make it there.

I do and always will appreciate the love I get from everyone but please, today - don't call me strong or an inspiration, I merely haven't been given a choice. I'm just a mum, wife, daughter and a person with a goal like anyone else... to see her first born walk through those gates.

Thank you all so so much for taking the time to follow my journey in full so far. There will be more to come eventually, but for now I will continue to rest and feel the boost from your messages of support. Love to you all. xo