I am 49, live in Banbury, have one birth son and a step daughter (but she doesn’t live with us). Widowed in 2006, have a new partner. I enjoy long dog walks. Work as a children’s social worker. I got into Parkrun last year. I love a spa day!
I was diagnosed with self-detected HER2* positive breast cancer in Feb 2020. The lump was 9.5cms and had spread to the lymph nodes. I started off very upbeat. I had a friend who was 8 years clear of breast cancer and had a double mastectomy with no reconstructions, she is living a great life. I also had a friend who I had been to chemo sessions with for bowel cancer. Sadly, she died, but had been inspirational in how she lived life with cancer, surviving much longer than had been predicted.
I also had the feeling that if I could get through 2006, when my only child was diagnosed with a severe and complex disability and 8 days later my husband died in a car crash, I could get through anything!
My friends drew up a rota of who would come to chemo with me and who would have lovely lunches and pampering sessions in my week 3’s. And then came the pandemic! Zoom calls just aren’t the same. On the up side, my partner was able to move in with me and the pandemic meant he could work from home. My son, 13 at the time, seemed to take the news of my diagnosis remarkably well. When asked what he knew about cancer he said, ‘it’s that thing you walk all over from the adverts’. For me, that was the perfect response. My mother on the other hand asked if I thought my partner would leave me if I had a mastectomy!! I blocked her calls for a few days.
Going for scans and a portacath* insertion on my own was hard – this was the first time in my life I had been unwell. I am used to caring for others, both at home and in my job as a children’s social worker. I cried on my way to the first chemo session – it felt much harder doing it alone.
My treatment plan:
- 6 cycles of chemotherapy and immunotherapy* – Herceptin and pertuzamab
- 12 more cycles of immunotherapy
- Surgery (likely to be a mastectomy due to the size of the tumour)
- Radiotherapy
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My hair started to fall out in cycle 1 – I was not prepared for my pubic hair to fall out first!!! In cycle 2 my hair had thinned in patches and the hair loss was getting me down so I decided to shave it off. This was a big event in the garden and I felt much better once it was gone. Not having to pluck my moustache has been a bonus!!
In cycle 2 I did a 7k run for charity in my garden. I signed up pre diagnosis and was determined to complete it – having cancer certainly increased the donations!
Throughout chemo I found the change in taste hard to handle. Not being able to drink coffee or eat chocolate was upsetting. All the food I loved now tasted awful – my family recall me demanding a pancake with garlic mushrooms, tucking in and then running off to throw up! Thankfully within a few weeks of chemo ending my taste buds are coming back.
I had lots of nose bleeds at the start of chemo and a runny nose throughout. I also had gastric challenges in each cycle. By cycle 6 my nails were starting to fall off – only then I remembered I was supposed to wear dark nail varnish during chemo to protect them!!
The hardest thing has been the isolation due to the pandemic. Not being able to get out for walks to see friends or take advantage of support services has been really challenging but I found the OUH YouTube videos on chemotherapy and radiotherapy really useful:
https://www.youtube.com/channel/UCQGI_gQkJMU73qPZ89YNMWw
The OBBG online sessions have been a lifeline. Just having something to focus on during the week helps. I also made myself a playlist of upbeat songs that made me want to dance, and every day I would try to do a few minutes of exercise to the music – it really lifted my spirits. I have remained sexually active throughout treatment as this is something that makes me feel good – endorphins are great.
So far immunotherapy seems a doddle. I do have aching muscles but my hair is starting to grow back.
I had a second MRI in July and it showed a complete radiological response*. This was great news, but didn’t change the treatment plan, so I ended up feeling rather deflated. It did however open up the possibility of a lumpectomy and LICAP*. This threw me – I had been preparing for a mastectomy and was convinced I would not have a reconstruction as I needed to recover ASAP to care for my son.
I had the lumpectomy and sentinel lymph node* surgery on 24th July. For the first time I felt angry the morning of surgery. I think it was fear that I may not see my son again – he would be an orphan if things went horribly wrong. I sent messages that morning to his guardians telling them how he likes hugs even though he is 14. Waiting for surgery in a room on my own was difficult, I just wanted my partner there. But all went well – I came home the same day and am feeling so much better than I did after chemo. The difficulty now is not overdoing it and remembering I have had surgery that needs to heal. Shielding is coming to an end and I want to run again – but I must be patient.
Results from the surgery are due on 5th Aug. If they have clear margins* then I can have the LICAP, or I can stay as I am and accept that I will have a dent in my breast when the saline absorbs. If they don’t have clear margins then I will have a mastectomy.
I got a great card from my family which made me laugh out loud – ‘I’m sorry your boobs tried to kill you! I really hope they don’t succeed!!
* Further explanations can be found on:
http://www.oxfordbreastclinic.com/breast-cancer-surgery/licap
Chat with Cathy, Oxford Breast Buddy Group, Breast Care Sister.
Chatting with your allocated breast care sister through your hospital, your surgeon or oncologist.
Ali