05. Ring my bell…
This is my perception and experience of my mum’s journey with breast cancer. I am not a Healthcare professional.
I was genuinely ok either way… if she had treatment or not. Sadly, I’d already gone through a cancer journey with my dad 8 years ago. First time round I was selfish - I wanted dad to do everything, no matter the cost to him, to fight to stay and be here with us. He knew he didn’t want treatment - he didn’t want a life of hospital trips or to be here if he couldn’t be himself - his full self… skiing down mountains, running round a hockey pitch or travelling the world with mum. As it turned out; there were no treatment options for him to decide between.
“Second time round, 8 years on and now a parent myself; my perception was different… this is my mum’s life, this is her body and this can only be her decision. I would support her either way”.
I remember the call when she said it out loud “I’m going to do it. I’m going to fight and try to get rid of any risk - I have so much life left to live”. I wasn’t relieved or worried, I was actually surprised. I think I’d convinced myself that she wouldn’t do it. But she’d taken her time, talked to the people she wanted to and made her own decision.
Mum had a great trip to the states and came home feeling refreshed, fit and strong. She’d done lots of exercise and had eaten well. She was fit and healthy already but she knew that the fitter she was going into this, it would help her body and mind through the journey of chemotherapy. Mum did the hard work for her physical and mental preparation, and so me, my sister and many of her friends supported with working out all the ‘things’ we might benefit from having in place before starting chemotherapy.
Everyone’s experience is different; people will all want and need different things to support them. This is our top list of things you can have in place to help:
Daily diary: a notebook where you can track key things each day - medication, fluid intake, body temperature, how you’re feeling, etc. There can be lots to think about each day and remembering it all can be hard. Having a daily check-list can really help. We also found this helpful when updating the Chemo Nurses, Breast Care Nurses and oncology team on how mum was getting on.
Chemo bag: we had a bag filled with essentials for while we were in the chemo unit on days mum was having her treatment. For us, this included; iPad with downloaded music and programmes, earphones*, phone charger, large bottle of squash, paracetamol, daily diary, purse with some cash, puzzle book and pen, eye mask, lip balm and tissues.
*if you do cold cap treatment need to think about what type of earphones you use
Toiletries: Your hair and skin can be extra sensitive so products like Aveeno are highly recommended. We got mum shampoo, conditioner, shower wash, body cream and face cream (she loved them and still uses them now). We also got a wide tooth gentle comb and a hair towel wrap to be extra gentle on her hair. Lastly, we put Hibiscrub handwash in each bathroom to try and limit germs and infections while mum was so vulnerable.
Silk pillowcases & snuggly blanket: Silk pillowcases are more gentle (cause less friction) on your hair and scalp, using these pillowcases can minimise hair loss. Mum used them in bed and also had a pillow behind her head in the large comfy chair in the lounge. We also had a snuggly soft blanket to use in the lounge so she was warm and comfy.
Food & drinks: You’ll have no idea what you may or may not fancy during treatment. My mum, who LOVES salad, went totally off all salad. Some items that we kept in the fridge/freezer were; small ginger shot drink, pots of jelly, microwave meals for 1 if she didn’t feel like cooking, lots of fruit for making smoothies and ice lollies. There will be some foods you can’t eat during treatment like ‘live’ yoghurts but just eat what you fancy when you fancy it.
Cold Therapy Socks & Gloves: Some people can get sore hands and feet, that can feel numb and tingly, which is called Neuropathy. Mum already struggles with sore hands and feet so we bought a set before starting chemotherapy. I’d wait and see if you even need them before purchasing as they can arrive in 24 - 48 hours from online shopping.
Support network: This will look different for everyone but having a few people to help with hospital days, food shopping and catching up on days when you’re feeling good will help for sure. Also knowing that a few people are on ‘speed dial’ to support as needed. It’s not always easy to be vulnerable and ask for help but friends and family will want to support - just be really clear on what you need and what you don’t need… it can change as treatment progresses so just be honest with those around you.
“Being prepared both physically & mentally, as well as with logistics & stuff you need makes the journey of chemotherapy smoother - not easier - but more manageable day to day”.
I live a 2 and half hours drive from my mum. I’d committed to be there with her through chemotherapy - well for 6 of the 8 sessions. This meant driving up on a Sunday night and staying with her for a few days before coming home on a Wednesday evening. The first treatment day arrived, Monday 6 May. Mum had taken her pre-medication, bags were ready, and so we headed up to the hospital. I was actually pretty nervous, I can’t begin to imagine how my mum must have felt. Through my work, I’d been on chemotherapy units before so knew what to expect to see and hear but now I was there in a different capacity… how would it be for my mum?
Being a bank holiday and a busy unit we waited a long time to be seen. This was also because my mum needed a certain grade of nurse to administer her infusions and monitor her as it was her first treatment. Eventually we went through and mum selected a large blue chair to sit in. We set ourselves up, got a cuppa and waited further instructions. Mum had decided to do the cold cap. This again was something that surprised me. My mum is not big on hair dressers, make-up etc so I thought she wouldn’t care about what happened to her hair. Turns out I was wrong. For a lady in her mid-late 70’s she has a great head of thick hair and she wants to preserve it the best she can.
Mum was set up in the cold cap, which had to run for some time, before starting her infusions. This involved lots of conditioner and fixing the unit and headcover. We had been told if you can get through the first 20 minutes then you can last the duration of your treatment. They switched it on and I could see straight away by my mums expression, how cold it was. We sat and chatted to distract her but then she needed to close her eyes and focus. I let her know every 5 mins how long she’d been going for and if by magic at the 20 minute mark, she opened her eyes and was relaxed. I imagine still very cold but it had reached its maximum and mum had ‘adjusted’ to the temperature.
The staff were lovely and mum was made comfy with pillows and blankets. A trolly came round with soup, sandwiches, fruit, crisps etc. Mum enjoyed her lunch and we watched a programme on the iPad. Eventually it was time to start her treatment. Mum was having a chemotherapy regimen which consisted of 3 different drugs. Her first 4 treatment days would be 2 of the drugs. They were both administered by IV bolus into the arm with a fast running drip of sodium chloride.
They were like giant Calpol syringes that the specialist nurse hand pushed into an IV port in the arm. This took time as the nurse has to do it really slowly. Mum seemed relaxed and chatted with the nurse. After this was done, mum had to stay for another 90 minutes for her cold cap to finish and to be monitored. This was when mum usually napped. Eventually after about 6 hours it was time to go home.
For her last 4 treatment days she had 1 drug administered by IV drip. Again, this was done slowly and with the cold cap it meant across all 8 sessions we were usually there for 6-8 hours. The staff were always so kind, helpful and made the day feel ‘light’ - they brought a level of joy and laughter.
Then on 12 August after her last treatment session, mum rang the chemo bell! Her chemo treatment was done - what a milestone! We had a small BBQ celebration that week and mum even managed a small glass of fizz!
The first few days after each treatment I was around to help mum relax, I’d cook, clean up and just be there. I’d also help with medication (she had to inject herself) and filling in her daily diary. Then she’d usually have an ok weekend and then a ‘normalish’ week. She’d walk with friends, potter in the garden and tried her hardest to rest. She’s not good at sitting still! Over the 4 months of treatment mum was certainly tired and her appetite changed. She managed the cold cap for all session - she did loose some hair but the cap definitely made a big difference. We had a couple of side effects to manage but mum appeared to cope well - both mentally and physically.
“This was always going to be a bigger mental battle for mum. She was physically fit and strong but feeling like she was pressing pause on her life for 4 months of treatment and then longer to recover… this was going to be so hard mentally for her”.
There was then about 2 months before mum had her week of radiotherapy. During this window she tried to find a balance of resting and doing. Her radiotherapy was in October and was a week of intensive treatment. Again, mum seemed to cope well but for a few weeks afterwards she was most certainly exhausted. The only ongoing treatment she has now are a couple of infusions (extra calcium) a year to help her bones recover from chemotherapy treatment.
Some time around late October / early November after her radiotherapy treatment she had an appointment with her oncologist. We talked before the appointment and wrote down all the questions mum had. Doing this before appointments helped mum be certain on what she wanted from the conversation but also meant she didn’t forget! One question was “Am I now in remission”? Mum asked this question and her Oncologist replied, “No Susan” and reached for a letter on her desk. She handed it to mum. My mum thought “Oh, what now”! She read the letter and it said… Surgery, Chemotherapy and Radiotherapy for cure. Mum was considered cured - her odds of any future illness was no different to anyone else. What a moment - it was just what she needed to hear to just get on now and live her life to the full.
I think some of her medical team think my mum is bonkers… at the age of nearly 77 and only 3 months after finishing her course of treatment she went back to running 5km park runs and has 2 ski trips planned for March/April. Go mum!
Love you mum - you are such an inspiration - always showing me and Kathryn how to handle some of the sh*t life throws at you. I just hope I’m half as brave, determined and resilient as you are when I grow up!
