Being a patient in the midst of a pandemic

Being a patient in the midst of a pandemic

As I wrote in my previous post, I have been in and out of hospital since March, pretty much the whole time Australia has been in lockdown. Going through health issues during this time has been challenging to say the least. I was lucky to have my surgeries at all because elective surgeries were put on hold to make way for an influx of Covid-19 patients.

Getting through the door of a hospital is like running the gauntlet as you are met by staff who screen you for signs of a fever and ask questions about your recent exposure risks as you enter the building. Visitors are limited which is difficult when you’re going through surgery.

On the 13th of May I had bilateral prophylactic mastectomies because my risk of getting breast cancer was 60-80% due to having the BRCA2 gene mutation. The surgery went well. The following morning I developed severe swelling in the left breast and my Hb dropped very low due to bleeding.

post operative complication after a mastectomy
Post-operative complications: My Hb was 63 (normally 120) so I’m extremely pale. My left upper chest is swollen up to my shoulder, compared to my right shoulder where you can clearly see my clavicle. The surgeon operated again to drain 600ml of blood. Not the prettiest photo of myself but it’s true to life

I had emergency surgery to drain the haematoma but continued to bleed into the drain. I lost over 1.2 litres of blood and needed 4 units of blood transfusion. It was extremely scary to go through, and I felt like I’d made a huge mistake to have the mastectomies done.

My recovery has been slow because of this setback. I was in hospital for 6 days, waiting for my blood count to get high enough. I’ve had some really low periods during the last couple of weeks, days where I’ve been really emotional and cried many times. I guess many women undergoing mastectomies would be emotional, but my own low mood is affected by the fact that my surgeries have had complications.

I have been extremely lucky to be in the position where I can have surgery during the pandemic. If I was a public patient my operations wouldn’t have gone ahead at all. I’ve always had private insurance, but that doesn’t cover all the costs so I’m lucky I had funds set aside for emergency as I am thousands of dollars out of pocket.

In Australia, hospitals have been very quiet because of elective surgery being cancelled. This has worked in my favour because I have been able to have a nice quiet atmosphere to recover. As a nurse I am well aware of how busy hospitals usually are so it was nice to see the nurses looking relaxed and not stressed.

I received outstanding care from the nurses and doctors during my admissions to hospital. I felt very well looked after especially when I had the post-operative bleed. If the nurses hadn’t been so on-the-ball my outcome might not have been so great.

I’m now recuperating at home, which will take time because of the complications. I’m very limited in what I can do and need to rest as much as I can. I’m typing this on my mobile phone because I need to limit my arm movements. I’ve never been so reliant on other people for my needs

I have deep appreciation for my husband who has been taking very good care of me. He’s had to shower me and wash and dry my hair as well as do all the household tasks. My heart swells with gratitude for how he has cared for me and I feel more in love with him for the way he does everything for me so lovingly. He has been my rock through so many things in the past.

I have felt loved and supported by so many people in the last few months. Even though we’ve had social distancing laws and can’t always be together, I’ve had many messages of support which have uplifted me when I need it the most. Social distancing hasn’t prevented them from caring.

My boss has been incredibly supportive as well, allowing me to have time off to have these operations and medical appointments. I am really grateful to her for caring and empathising with my situation. It has made a huge impact on my morale going through all my health issues to know my job is secure.

I’m through all my surgeries now, and on the way to recovery. I’m looking forward to gaining some independence back because it’s hard relying on other people. I’m very bruised and I still have drains in. I can’t do much except rest as I’m not able to raise my arms above my shoulders or even go for a walk. I’m really looking forward to the day I can walk the dog.

This year has made me aware of what truly matters in life. It’s not possessions or expensive holidays that count. The things I value now are my health, my loved ones and my independence. I feel very loved by many people and that is the ultimate outcome of a year which has brought unprecedented change to everyone worldwide.

Beating BRCA2 – How it has Affected My Life

Beating BRCA2 – How it has Affected My Life

While the World Has been focused on the Coronavirus I’ve been beating cancer

While the World Has Been Focused on the Coronavirus, I’ve Been Beating Cancer

The World around us changed dramatically between my birthday and my best friend’s birthday three days later. We spent the weekend together with our husbands, the four of us celebrating by staying in a resort and drinking, eating and laughing together. After we went home the restrictions started suddenly so that it would no longer be possible to socialise in that way. Our last weekend together from 20-22 March is the last time we could eat out at a restaurant or cafe, drink in a hotel or even spend time together. It seems like the distant past now.

Restrictions in our State have begun to be lifted but we still can’t eat out together or cross the border to visit my family who live just an hour south. Social isolation has added another layer to my own health battles that began to unfold this year.

BRCA2 Gene Mutation and Cancer Risk

I was diagnosed with the BRCA2 gene mutation in March. You may have heard about Angelina Jolie having BRCA1 and undergoing bilateral prophylactic mastectomies and a total abdominal hysterectomy a number of years ago. BRCA2 is similar – it increases my risk for breast and ovarian cancer dramatically. It’s a case of not if I develop these cancers, but when.

I knew there was a chance of inheriting this gene about 10 years ago when I nursed my cousin who told me she has the gene. I had genetic counseling back then but it was not very obvious that the gene was on my side of the family as there wasn’t a high number of family members with cancer, especially breast and ovarian cancer. The genetic counselor thought my cousin probably inherited it from her father (no blood relation to me). So I didn’t get tested and opted for more stringent screening instead.

I’m a huge advocate for screening – I’ve been having early mammograms and ultrasounds for the last 10 years and I get my skin checked six monthly. Because I starting taking my sons for skin checks from a very young age, my son’s melanoma was picked up when it was just a stage 1 cancer. A lot of people ignore things til they’re so advanced but that’s not me. I get every little bump checked out because I’ve seen too many invasive cancers as a nurse.

My Son’s Melanoma – He was Only 24 Years Old

The last few years have produced more cases of cancer in our family – my son, brother and sister have all had melanoma and my father had prostate and pancreatic cancer. It was always in the back of my mind that I should probably get tested for BRCA2 so I went back to the genetic counselor, was tested and found to have it. I inherited it from dad – I had a 50% chance of having it and my sons then had a 50% chance of inheriting it from me. My first reaction was not for myself, but rather for my sons – “I’ve given them a death sentence”.

BRCA2 Affects Males Too

Telling them was difficult. It would have implications for when they want to start a family, and it might even be a deal-breaker for some women who wouldn’t want to have the risk of having children with a genetic disorder. They surprised me with their reaction, however. They said they’d rather know if they had the gene so that they could more more aware of screening and getting any changes in their bodies checked out early. They underwent genetic counseling and were tested and we were surprised and ecstatic to find they don’t have the genetic mutation after all (even my son who had a melanoma which is even more surprising).

Risk Reducing Surgery

My first response to finding out I have BRCA2 was to swiftly decide to have prophylactic risk-reducing surgeries. That involves removing the organs most at risk of developing cancer – ovaries (I have a 20-40% chance of getting ovarian cancer) and breasts (60-80% chance). Having nursed women with ovarian and breast cancer for most of my nursing career, I know how devastating those cancers are and I want to avoid them as much as possible.

I had the first surgery on March 30th – a laparoscopic bilateral oophrectomy (keyhole surgery to remove my ovaries). This surgery is low-risk and most people bounce back quickly, with very little complications. Then there’s me. I seem to have the worst luck when it comes to complications to procedures – I went into complete heart block after an angiogram and required CPR. One medication landed me in hospital from a severe allergy. So to have complications after this small operation, while not surprising for me, was a shock to the system all the same.

I bruised. My abdomen got extremely distended. A lot of pain and nausea. But the worst thing – I couldn’t pass urine. I ended up going home with an indwelling catheter and it unearthed a problem with my bladder that’s probably been there for a long time but wasn’t apparent until I had pelvic surgery. I had follow-up surgery to fix it last week and while there was an improvement, I’ll continue to have issues for a long time because my kidney and bladder have been damaged. All my back pain was from my kidney, not my spine after all.

This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. I’m scared of having this operation after what I’ve been through, but I’m more scared of breast cancer. Someone said to me that I’m brave to do this – I don’t feel brave. In fact I feel just the opposite. The women who have breast cancer are brave. Imagine going through this operation as well as radiotherapy, chemotherapy and medications for life. That’s brave to me.

I feel like I’m cheating cancer by doing these surgeries, but there’s still the risk of getting a different type of cancer because of this gene mutation. BRCA2 causes pancreatic, prostate and renal cancer as well as melanoma so I’ll still have to remain vigilant. Of course I can’t get prostate cancer, but pancreatic cancer is hard to detect and my dad’s was too far advanced to have any treatment. It ravaged his body and he only lasted for 7 months after it was diagnosed. Poor bugger, it was a horrible way to die.

How the Coronavirus Has Impacted Me

So while the world’s attention has been focused on coronavirus, my attention has been on my own health issues. I’ve found it hard to cope at times because it’s restricted my ability to interact with the people who are my confidantes and support system. Talking on the phone is not the same. Even when I was in hospital I could only nominate one visitor for the whole hospital stay. My husband was sent away from the hospital and could only visit for 2 hours once a day. Going through mastectomies will be daunting without him there for my support. The thought of it upsets me a great deal. I won’t be able to have my sons and best friend visit at all.

Elective surgeries were cancelled in March but I guess I’m really lucky that I knew the surgeons personally and my first operation was pulled forward to beat the deadline before it would have been impossible. I feel a little guilty that I could get this preferential treatment but there has to be some perks for nursing alongside these doctors for the last 20-30 years.

Having to tell my brothers and nephews over the phone and Messenger that they too have a 50% chance of inheriting this really sucks. Social distancing sucks when you have to have these very full-on conversations. Worrying that I may get the coronavirus affects my health too, because I have co-morbidities that would mean I’d be one of the cases most likely to end up really sick from it. It’s been a very stressful time, and I’ll be glad when this is all over and we’re out the other side. One things for sure, the world will be a changed place when this pandemic is done.

Note to my followers: I’ll be out of action for a while due to my surgery this week. I may be able to post short updates via my mobile phone but my usual blog posts will be on hold for a few weeks. Thank you all for your support, I really appreciate it.