"When I began my journey it was very difficult to get the GP to (a) understand BRCA gene testing and (b) instigate sending me for the blood test. I am unsure if this has improved, however I believe GPs should be much better educated about this type of gene testing and have the relevant questionnaire to put you forward for testing in the surgery. This was not the case at the time I began my journey and the relevant questionnaire had to be sent off for. This is all potentially dangerous time wasting.
I had a double mastectomy and DIEP Flap reconstruction surgery in July. (DIEP stands for the deep inferior epigastric perforator artery, which runs through the abdomen.) For this surgery stomach fat was implanted in my chest – the flaps are essentially live donors. I went into surgery at 9am and underwent a 13-hour surgery, with 12 hours of recovery, before being brought to an intensive care ward.
Here my flaps had to be monitored every half hour to ensure the blood was flowing to the new tissue and that it stayed alive. This was exhausting. You cannot sleep because of the constant interruption. You also have to wear a heated blanked which can be quite uncomfortable, but again it is to keep the flaps warm. Whilst the nursing staff made regular checks, the rest of the time I was in a room on my own. I felt absolutely no pain whatsoever at any time, bar a painful couple of days at home when a nerve got caught up in a dissolving stitch. The team was amazing and I wasn’t even sick after surgery. It’s quite incredible really.
I did suffer some post operation problems; flaps didn’t close properly and there was some infection in the open belly button. The antibiotics deflated me somewhat and left my system low. I also had fluid build ups that meant they had to be drained by needles several times. Again, this may sound horrific, but I felt no pain. They give you a little anaesthetic before doing it but I don’t think you have any nerves there anyway.
After the most amazing surgery, I was let down by the aftercare. For example, despite the hospital being educated on many diet needs it was not educated about a vegan diet. I was literally starving until my family came in with food for me. You are not allowed to use microwaves on the ward and therefore my food was limited. I tried to explain a number of times what a vegan diet was, but they continued to bring me cheese and chicken sandwiches.
I was in hospital for five days after surgery and didn’t get a letter to attend the dressing clinic till about a week or so after I returned home. I was glad of this because strange smells were developing both from the dressings that hadn’t been changed since my operation (they don’t touch these in the hospital) and my belly button which had an infection. The hospital referred me to the GP and the GP referred me back to the hospital. No one wanted to take responsibility for the dressings’ aftercare.
I had three open large wounds (breasts and belly button) that needed dressings three times a week. As neither place could organise a home visit, I had to take a cab several times a week, relying on lifts and getting myself to the hospital. I was still weak from my surgery. This is another example that illustrates why I believe support required after surgery needs to be greatly improved and include home care.
Today, I still suffer hard lumps on one breast, which is apparently scar tissue. I am still going to the dressings clinic. Unfortunately this means I have to wait for a doctor to finish his round before he can see me. There have been lots of times in the dressing clinic where I have had to wait more than 2 hours. On one occasion I had to wait 4 hours to see a plastic doctor to decide whether I could go home or if I needed further fluid removing. There should be a doctor on site in the dressings clinic but there isn’t. This definitely needs to be improved and looked at.
My surgery was originally due to take place in February. After spending Christmas preparing for this with my family, the surgery was cancelled a week before it was scheduled. Apparently, it was due to the doctors' strike. I had waited for this part of my surgery for 18 months and was so deflated and disappointed. My surgery finally took place on the 20th July and I am now recovering and back at work full time already."
If you would like to share your story or become an ovarian cancer voice, please contact Ross@ovarian.org.uk