Living with uncertainty

[Rowena]

I was lucky enough to be put on cancer fast track by my GP last year, as back then I just had a nagging back ache, tiredness and stomach ache. I was diagnosed end of June 2022. I pushed for a prognosis and was given 6 months. I have the best husband and seeing him so upset nearly tipped me over the edge. I’ve had 7 rounds of chemo. Some bad days which were difficult at the time,  but are just bad memories now. The chemo stopped the pesky tumour in its tracks, but did not shrink it away from the major blood vessel so surgery was ruled out. As the tumour was only in the head of my pancreas  and had not spread I was lucky enough to be eligible for the EMERALD radiotherapy clinical trial in Oxford. I was the first person in the UK to have the highest level of radiation delivered in one dose in January 2023. I was in the MRI machine for just over 3 hours. I have had minimal side effects, the worst being some nausea and extreme fatigue. The nausea responds well to the medication and the fatigue is gradually getting better. I sleep more than I used to and am gradually rebuilding my muscle tone doing Aqua-aerobics. I have started a phased return to work and the rest of my life feels like I am making a phased return as well. Hopefully I will be as strong as I can once my battered body has recovered as much as it can. I have an amazing team to thank for all the help they have given me. My husband and family are my rocks and help me every day. I have just had my scan results three months after the radiotherapy and 10 months after my diagnosis ….No growth and no spread. Best news ever!  I titled my story “Living with Uncertainty” because cancer puts you firmly in that position. I don’t know what the future holds, but then I didn’t before I was diagnosed. I love my life and have told my story so that anyone going through the dark days can read my first hand experience because I think back to that initial prognosis and how shocked and scared I was and give thanks for every day since then

[Skippy]

You've given all readers hope Rowena I'm sure. Great news to hear. The Emerald Radiotherapy sounds brilliant. Stay positive.

Love to you, for putting it on the site. 

[Rowena]

Thank you Skippy

[Rowena]

Hi. As some time has passed I thought I would give an update. I am now back at work full time and enjoying some fabulous holidays. I use “Insurewith” for European travel insurance as they cater for travel with cancer. I continue to have 3 monthly CT scan and blood tests. I am so grateful to still be here. I am not up to full strength yet, but the post treatment symptoms including nausea is getting better. The results from the Emerald trial will be peer reviewed at the end of this year and hopefully published spring 2025. 

[Clairey5]

Hi Rowena, what a lovely post to read, I’m so very happy for you.

Can I ask what test you had to initially get the diagnosis please?

I’ve had pain, low faecal elastase and a few other symptoms for some months now, and have this gut feeling that it’s serious.

If I could go to my GP and just request a test that would rule out cancer it may put my mind at rest.

Thank you for posting with your update, sending love  

 

 

 

[Rowena]

Hi. I had backache, fatigue in addition to acid reflux. I had been given a series of gastro tests to check what was happening. The tumour was initially shown on a CT scan. This was booked when the GP referred me as a result of the backache and fatigue. A month later a biopsy was taken which showed that the mass on the head of my pancreas was cancer.  It was classified as stage 4. I am currently under palliative care.   The team looking out for me are superb. They check in to see how I am and, post the clinical trial handover back to my oncologist, I  have three monthly reviews.  Good luck with your diagnosis. If you have anymore questions please ask. 

[Suzanna]

Rowena , it is great to hear an encouraging post . I am pleased that you updated us all on your progress. As it gives others hope .