“Family is the most important thing in the world”
It has been a few weeks since I put fingers to keyboard – I shall explain. My wonderful dad was admitted to hospital nearly seven weeks ago with heart failure. Five weeks ago, we held so much hope when we were told he was being transferred to a specialist heart centre, one of the best in the county, and would undergo immediate surgery. It was enough to send the whole family into disarray. Dad was and continues to be his usual calm, steadfast self holding us all together with his joy and laughter.
During the initial few days in the new hospital, we were told many investigations were required. A few days turned in to a week and then two and then three. Dad became increasingly poorly. Then came the devastating blow that surgery was no longer an option. My heart shattered into a million pieces.
And so, here we are, trying to be strong, not knowing what each day will bring but facing each day with a smile and a box of tissues. Every day dad tells us ‘I love you from the bottom of my soul’ and I know how blessed we all are to have each other. Even in his poorly state, he has been knitting blankets for Syrian refugees; being Agony Uncle to the staff and patients on the ward; always putting the needs of others before this own.
We pray to God for a miracle, to lay his hands on dad and cure him, for he has been so selfless in his life and helped so many people with out knowing the joy and light he brings – we all still need him!
Amidst visiting dad in hospital, I’ve been cracking on with my own cancer diagnosis and at the beginning of October, my appointment with the oncologist fell due. The last few weeks had been helpful in terms of my recovery but I knew seeing the oncologist would mark a new phase of my journey setting out adjuvant therapy and the next ten years of my life.
My consultation was seamless. The consultant was very quietly spoken, we had to really tune in to hear what he was saying. I was very keen to understand risk associated with recurrence and he was able to reassure me considerably. I had hoped, given I need to have a hysterectomy, to avoid Tamoxifen and other endocrine therapy but his advice was clear, it is still necessary, for ten years. I struggled to get my head around this. My radiotherapy would begin in three weeks or so and I could expect a phone call within ten days for my initial mark up.
I left hospital, Tamoxifen in hand, wondering how it would impact on my life, knowing I have no other reasonable choice. I can’t lie, for the first couple of weeks taking the Tamoxifen I was like a spoiled child saying things like, ‘only 120 more packs to go’ or ‘only 3645 more tablets to take’. I’m over myself now!
As we drove home, I got a phone call from the Cancer Centre inviting me to go for a mark up the following day with a view to starting my treatment the following week, which was much sooner than I had expected. Obviously I said yes.
I went the following day and was grateful Clare was able to come with me at such short notice. I was given a gown which would become mine for the next four weeks, cluttering the kitchen table. My initial response to the radiographer was akin to Goldie Hawn in Private Benjamin, ‘Is green the only colour these come in?’ It was huge and drowned my now size 8 frame – still, we giggled and went into the radiotherapy room, camera poised so I could take some photos for my blog.
I am not sure the radiographer had been asked too many times if taking photos were allowed and of course when they tentatively said yes, Clare immediately set to, moving chairs, climbing on patient steps and the like, whilst the radiographers positioned me, in an attempt to get the best shot. This is why I am smiling in each of the pictures because she was making me laugh!
I acquired my first tattoo – actually three of them. You can see in the pictures below a tiny black dot which I have circled in red; this is in the centre of my chest, between my boobs. I have two others on each side which assist the radiographers when lining up the radiotherapy machine each day.
My radiotherapy took place for 15 days over four weeks excluding weekends. Some days, I would be seen on time and others there would be quite a bit of waiting around. Immediately after my first treatment, I noticed a difference in the pliability of flesh and after 2-3 sessions, the place where my new nipple would be had risen and so was out of line with my existing nipple. When chatting with other patients, this was definitely a breast reconstruction issue so if you have had breast surgery without reconstruction, this should not be a problem.
My breast care nurse advised me to go home after each session, strip off and sit in front of a fan and so I did, even if it was a few hours after my treatment (as the radiotherapy continues working and is cumulative in its effect). The fan definitely cooled the area down but my breast remained hot even with the fan on and the rest of my body in a state of shiver.
I religiously applied Aveeno, twice per day and aromatherapy oils (as mentioned in my previous blog). I have had some side effects, the odd blister; redness; heat; painful ribs due to inflammation from the radiotherapy; a tighter, firmer boob; I have also felt very tired on some days but factor in I have spent six hours a day most days travelling between hospitals in two different cities having radiotherapy and seeing dad and then coming home and trying to be mum to the kids and a wife if I have the energy! I’m not complaining, it’s just the way things are right now and I’d travel to the ends of the earth to see dad every day when he needs me so much, regardless of what’s going on.
When I finished radiotherapy, the radiographer said things (as in the side effects) are likely to get worse over the next 2-3 weeks. I honestly took it with a pinch of salt and by day three post rads, my skin felt like I had chronic sunburn with more blisters emerging. This too will pass and very soon it will be behind me. Overall, the radiotherapy has been far less invasive and with less side effects than I thought.
There has been an unexpected pleasure of radiotherapy and one I will treasure. Every day you go to the Cancer Centre and it is a drain on many levels, both emotionally and physically. When you arrive, cancer is all around you, in every nook and cranny. The Centre totally enlivens you, it is an opportunity to bring people together, everyone, with their own story to tell, the staff are amazing, particularly Hayley who guided me when I had a bad day.
Nikki, Mike, Flo, Raj, John, hoping to get better, all hoping we will all get better. Everyday we meet and exchange pleasantries but by the end of our treatment, saying goodbye to these people is difficult, I feel like they have been part of my journey and I feel sad having to say farewell.
So amidst the furore of oncologists and radiologists, I went to see my gynaecologist; a beautiful lady who reminded me of my grandma with the Indian lilt to her accent. The purpose of my appointment was to understand the benefits of a hysterectomy for women in my position or whether an oophrectomy would be a safe and suitable alternative by mitigating my breast and ovarian cancer risk.
We talked at length about the options and particularly about my main concern – a prolapse – I don’t want to be faced with a leaky bladder! She assured me that so long as I came out of theatre clenching, I’d fine. She said her advice to all women is to perform pelvic floor exercises every time you put the kettle on and to clench until the kettle boils, problem is, we’ve got a bloody big kettle, it takes an age to boil!!
What we came to was whilst the oophretomy will protect my breast and ovarian cancer risk, if the uterus is left intact, there is a heightened risk of uterine cancer for women who take Tamoxifen. Given my prescription is extensive (now 3605 days and counting), do I really want to take the risk given they are in the area and can whip it out. My main concern is my abdominal scar is healing nicely and I want to avoid at all costs an abdominal hysterectomy but we hope the procedure will be either laparoscopically or vaginally and all being well, it will be carried out in January.
There are lots of appointments coming up, the breast care nurse to discuss my future management and care; the oncologist to assess how my treatment is going and how I am responding to Tamoxifen (I could write a whole blog about that one!); the Cancer Centre to manage my discharge from radiotherapy; the very long awaited prosthetic nipple appointment which is on Wednesday 7th – I will tweet about it!; the gastroenterologist to check out my abdomen, and so it goes on. I wonder sometimes what did I do before I had cancer.
I found out on Friday one of my very good friends has been diagnosed with breast cancer too so I will do everything I can to support her – you are not alone; there will be good days and bad days and we will face them all equally. I count my blessings every day, the fact I have access to such wonderful services; the amazing friends who have selflessly given up their time to take me to appointments; insisting on driving when I could have easily driven; taking time off work; going to hospital when hospital is their phobia; just always being there. Not forgetting family, who are the most important thing in the world and without them, for me, there would be nothing. The last few weeks have been particularly difficult for us all and without the support of dad’s brother’s and their wives we would have been lost so thank you all.
Hopefully, it won’t be quite so long until I write again.