Q&A with OWise User: Michelle

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Tell us about yourself

Hi, my name is Michelle and I am 43 years young and live in Ramsgate, Kent with my husband and our 2 rescue cats, Starla and Selene (I know, pretentious names for cats, blame my husband). We have lived along the Kent coast for 19 years after moving from South Africa and thoroughly enjoy it here.

I enjoy baking and always up for making a cake for a friends birthday or any celebration for that matter. I thoroughly enjoy photography so when I’m not baking a mess in the kitchen I’m out n’ about exploring with my camera.

What was (or is) your treatment plan?

I was diagnosed with Triple Negative breast cancer on the 13th Aug 2019 at the age of 42. I had a few lumps with the largest of 53mm and lymph node involvement. Due to the cancer being grade 3 and fast growing I started with chemo as soon as all my MRI and CT scans were done. The chemo was from the 17th Sep 2019 to 6th March 2020 with 3 different drugs. I then had a left mastectomy and axillary node clearance on the 1st April. I had 27 lymph nodes removed and all were cancer free so the chemo did its job! I had 15 sessions of radiotherapy to my chest wall and supraclavicular lymph nodes which finished at the end of June.

What were the main treatment side-effects that you had to cope with?

With EC chemo (chemotherapy using epirubicin and cyclophosphamide), it was nausea, constipation and bone ache. When I moved onto the Paclitaxel and Carboplatin the nausea stopped and overall easier to deal with, just a couple of ‘zombie’ days. Towards the end of this regimen I did start with neuropathy and sore mouth as I was on weekly treatments. The constipation continued until after treatment had finished and I took Senokot and Laxido daily to ease symptoms. Overall, my side-effects weren’t as bad as I was expecting, and I was fortunate that my blood levels and neutrophils were fine for me to have my chemo each time.

I did not, however, anticipate the side effects to carry on after chemo had finished, with pain in my fingers, knees and hips. This has now subsided, and I have hardly any bone or joint pain now 6 months after chemo ended. I have the strange sensations and pains from the mastectomy and numbness still, which can stay with me for a while.

How did you manage or are you managing these side-effects?

With my side effects, I kept a weekly diary that I would record how I was feeling mentally and physically. It helped me to listen to my body and in a way forced me to focus on my own health by writing things down. I went out for walks when I could and the days I was too tired I rested and watched a couple of good films. I also drank loads of water and now still I carry my water bottle with me all the time. I am 6 months post chemo and now in a good habit of always keeping hydrated.

Were there any tools or resources that you wish you had known about when you were diagnosed or was there anything that you felt was lacking during your treatment and aftercare?

Knowing about the OWise app at the time of active treatment would have been great. I started a notebook the moment I was diagnosed as I had so many questions. It was also tricky keeping an eye on appointments as often they would be last minute and at different hospitals which I did get wrong at one time and miss the appointment.

Being aware of how it affected you mentally would be good, especially now treatment has finished. Going through treatment I was so focussed in getting to my end goal and focusing on my health that I did not think much about my mental health and how I would feel quite confused once treatment had ended.

Could you tell us about your experience testing the new OWise app?

I found using the app very useful and an easy way to track all important details of my treatment. While undergoing treatment I wrote all details in a notebook and kept a lever arch file for my letters and wrote important dates on my kitchen calendar. So having this app would enable other patients to keep all information in one easily accessible place. The app was easy to use. I had a few technical issues in the beginning being an android user but these were quickly resolved and I was able to get started with the testing.

I found the trends very useful and an easy way to record. The question list would definitely benefit me, as there were already listed questions that would relate to cancer treatment, as well as questions I wouldn’t think at the time to ask.

Do you think that OWise is a useful tool for someone diagnosed with breast cancer?

Yes definitely, it’s a great source of information which stops you from ‘googling’ everything and a great way to record all details of treatment. You can record any detail; from your appointments to side effects to treatment reports and even an overview on your health trends.

Its great to keep all the information in one place, as I had bits of paper everywhere so in the end I had a lever arch file to record my notes.

Favourite OWise feature/function.

I found the recording of trends very helpful as it’s a good reminder to actually ask yourself how you are feeling. I found the Question List very helpful as it is a good prompt on what questions to ask your specialist. And finally; the Glossary. I have an inquisitive mind and always want to know what all the medical terms mean, especially when you receive a report from your specialist.

How has your lockdown experience been?

I was fortunate enough to have my chemo finishing on the 6th March just before lockdown. I was told my mastectomy opp may be delayed due to the lockdown, however this was not the case and instead my opp went ahead on the 1st April at a private clinic. I was treated very well and impressed with the promptness of my operation and treatment. My radiotherapy was delayed due to the machines working overtime and my local hospital only having 2 out of 3 machines working. I did have delays from 20 minutes up to 2 hours in receiving my radiotherapy. This did improve in the second half of my treatment.

It has been odd having phone calls rather than seeing your specialist in person as I prefer ‘face to face’ contact. I obviously understand why and for them to eliminate risks. However it does affect your mental health when you haven’t seen a specialist and want them to for example, check your scar is healing as its meant too, or the swelling is still fine and nothing to be concerned over.

Do you think that remotely sharing side-effects with your doctor is a useful feature in the current climate?

Yes definitely, as by sharing the side-effects it will help us mentally and as we are not able to meet ‘face to face’ so sharing details remotely is the way forward.

Do you think digital tools such as an app to track your treatment side-effects are useful?

Yes definitely, it’s a central point to record all essential details throughout your treatment and overall helps mentally in tracking your progress. 

 

Michelle was part of user testing for the new OWise app which is now available on the iOS App Store and Google Play. If you have any questions about the app or have any further feedback, please get in touch.

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