Statistics tell us that one in eight women will receive a breast cancer diagnosis during their lifetime and regrettably for one member of the Against Breast Cancer fundraising team in May 2018 our colleague Allie became that ‘one’, this is Allie’s journey.
For the past 6 years Allie has given support and advice to fundraisers of all ages and backgrounds right across the country. She has used her experience and wisdom (and no small amount of wit) to help hundreds of people to reach their personal goals.
Now, that same encouragement and the benefit of others knowledge is being passed back to her by many of these same fundraisers as they learn of her diagnosis. Allie has unexpectedly found herself in a unique position of receiving comfort, support and reassurance from others who have been through or are going through, or know people with the experience of similar diagnoses.
This has motivated her to support and inform people in a similar position to herself by providing them with a unique opportunity to follow her thoughts and her feelings, from diagnosis, through treatment and beyond.
Follow Allie’s journey as she tells it in her own words;
18th April 2018
So, I turned 50 in June 2017 and had a party to end all parties with my many friends and family not even I can remember!! Along with turning 50 women are encouraged to have regular mammogram screenings every 3 years.
I had my invitation to my first planned screening and had to attend on 18th April 2018 which I duly went along to and thought no more about it. It was a bit uncomfortable, but by no means painful. 20 minutes out of my hectic schedule.
Over the past 20 or so years, I have suffered with cystic breasts which needed to be aspirated, so when I was recalled the following week, I thought not a biggie, I have another cyst which will need to be drained.
26th April 2018
On my arrival at the breast clinic at the Churchill Hospital, I was whisked away to have a repeat mammogram, and this was followed up by seeing a Doctor who did an ultrasound. I asked her if I had another cyst and she said no but mentioned the phrase ‘DCIS’ (Ductal Carcinoma In Situ). Even though I work for the charity and knew what this was, I had to ask what it meant so I could be clear in my head. The consultant told me I would need a biopsy and I said to her ‘so you will write to me with an appointment’ to which she replied that no, it would be immediately after the ultrasound.
I was taken into another room and had 12 biopsies taken and a titanium clip inserted to show where the biopsies were taken from in the breast for future reference. Still at this point, I thought it would all be okay.
I had gone to this appointment by myself as I thought I just had a cyst. I told my husband Thom that it would be okay – they would drain the cyst and I would be back at work within the hour so there was no point coming with me.
4 hours later I was allowed home.
4th May 2018
My results were ready on 4th May (Star Wars Day!). My husband and I sat in the waiting room chatting away. When we were called in, I saw the same Doctor as the week before along with a support nurse who was amazing and stayed with me the whole time during my previous visit.
They gave me the devastating news that I had breast cancer, confirming that is was DCIS and also another malignant tumour. Both my husband and I cried and hugged each other and to be honest the rest of what the doctor told me didn’t really sink in.
I couldn’t wait to get out of that room. We went to get a coffee before going back to see the Breast Cancer Specialist Nurse who then explained the operation again and gave us lots of literature to go through. She also booked us an appointment to see the Surgical Oncologist on Monday 14th May.
This was moving so quickly (which to be honest is a good thing).
I had to go home to see my elderly mum and my brother and had to call my daughter who was abroad. She knew I was getting my results and if I hadn’t called her she would have known something wasn’t right. We told my step children the following week.
Telling the people that I loved was the hardest thing I have ever had to do.
14th May 2018
On the appointment with the Surgical Oncologist and again a Breast Cancer Specialist Nurse, they went through my results again just to make sure we understood what was going on. She then went through the type of operation I would be having and then explained the further treatment.
My operation is booked in for June 12th and will be followed by radiotherapy and Tamoxifen, or the equivalent for 5 to 10 years.
I will be having a Therapeutic Mammoplasty (also known as a lollipop scar mammoplasty) alongside a Sentinel Lobe biopsy to see if the other tumour has spread. This will then determine whether chemotherapy will be necessary.
If I am being honest, all this has still not sunk in and I don’t think it will until I have my surgery. I had no symptoms of breast cancer, I don’t feel unwell and have always checked myself, but DCIS is not a lump and you can’t feel it and the other tumour is so deep in the breast, I wouldn’t have known it was there.
16th May 2018
A couple of weeks after my diagnosis and whilst chatting, my husband said, ‘there are so many friends and family that you haven’t yet told, how are you going to do that?’ After some thought I decided to do a funny Facebook post which I’ve included below.
Now you must understand that both my husband and I have a very wry sense of humour, it is the only way we can get through this.
On a positive an upside of having breast cancer (sorry I couldn’t get around to telling everyone personally) is that my wonderful hubbie has said after years of begging we can have some outdoor flashing reindeer this Christmas!!!!
Having got it out there, it felt like a huge weight had been lifted and that night I slept properly for the first night since my diagnosis. I had even got some sleeping tablets from my GP, but to date I still haven’t taken any. I don’t want to become reliant.
4th June 2018
It’s the week before my operation and today is my birthday! Happy birthday to me 😊
Thom and I went away for a lovely long weekend down to Cardinham in Cornwall to get away and try to relax before my operation next week. We stopped for breakfast at a lovely little place called the Hog and Hedge. As I sat in my oversized comfy leather chair, my phone rang. It was an automated message from the hospital to confirm my appointment at the Breast Clinic Oncology Outpatients for Friday 8th June. I confirmed the automated appointment and said to Thom, ‘I had no idea I had another appointment before my operation’. He said ‘I am sure you will have a letter explaining it all when we get home’. We had a great weekend of sun, food and slightly too much red wine. Mevagissy and Fowey are beautiful in the sun.
On our return home, sure enough a letter from the hospital confirming my appointment, however I still don’t know what the appointment is for as it didn’t say except where and when to go. I called the hospital to try to find out more about what the appointment was for, but they couldn’t tell me, just that it was to see the Breast Surgery Team. I am sure I will find out more on Friday!
7th June 2018
I had a call from the breast clinic at the Churchill hospital for another appointment on Monday 11th June to have my injection for the radioactive material!
8th June 2018
My husband accompanied me to my appointment and thankfully it was just to go through the operation again and make sure I was happy with everything before the day.
11th June 2018
At 12 noon, my appointment for the radioactive injection. We had to wait for the material to be signed out and I was beginning to get more nervous about this injection than the actual operation! Not sure why, but reading the letter which said they would be injecting the radioactive material into my nipple just scared me senseless! However, when the time came, it wasn’t too bad, a little sore and uncomfortable, but I was able to go back to work in the afternoon.
12th June 2018
Today is the day! I have had to fast from midnight, just water until 6am and then nothing. I am going in for 7.15!
13th June 2018
Yesterday I had my operation. Firstly, I had the wire inserted in the area they were going to operate on. I Went in to surgery and remember looking at the clock in the theatre at 10.15am then nothing until I woke again in recovery. Lots of morphine and painkillers and back to the ward to recover. I finally went home around 5pm. I have not seen my husband all day but I know that he was waiting all day in the waiting room for me to reappear, it was so lovely to see him when I came through to the waiting room, such a relief.
I think the anaesthetic is still working as not in too much pain! I had forgotten about the blue dye they injected and I am beginning to morph into a smurf! I’m not sure how long this will take to disappear. Had a good night’s sleep surprisingly.
14th June 2018
The anaesthetic is wearing off – painkillers at hand. I had my first shower today after the op and got a good look at my scars. The one under my arm is the most painful to be honest. Plenty of painkillers every few hours seems to keep the pain manageable. I have changed my bras to ones that I bought before my op. M&S do fantastic post-surgery bras and you also get VAT relief on them if you have been diagnosed with breast cancer. This is taken off at the time of purchase, not sure if other outlets do this or not, but might be worth asking. These are so soft and comfortable, definitely worth purchasing.
25th June 2018
Two weeks tomorrow and still resting. I get very tired especially in the afternoons, tend to take a nap about 2pm for an hour or so and this helps to keep me going.
I did pop along to an event I had been helping to organise before being diagnosed. This was a 12-hour Jiveathon with about 50 dancers taking part. I could only manage half an hour or so, however it was great to pop along and see some colleagues and friends.
This event so far has raised a fantastic £29k! Well done to Coralie Green from Jive+ and all the dancers. These funds will go directly into our fantastic research and help so many people.
I have my follow up appointment at the breast clinic on Wednesday so will know more about the further treatment then. My underarm is still very painful and swollen so I will mention this at the appointment. The breast is healing well but still blue!
I don’t know why I find it so hard to talk about my feelings. Do I have any? I still do not feel anything in particular about having breast cancer. Has it still not yet sunk in? I would have thought by now that it would have done. It has been more than 6 weeks since my diagnosis. Still no tears, no tantrums, nothing at all. I just seem to be going through the motions of everything. My husband Thom seems to be struggling more than I am, bless him. He has been a godsend, doing everything – even the ironing!! Friends, family and colleagues have continuously been in contact to ask how I am doing and all I can say is I am getting there slowly. Healing well apart from the underarm pain. Mentally I don’t feel any different. Perhaps this will change or perhaps this is just my way of coping. I think by having a positive outlook on life (for me the glass is always half full) helps.
27th June 2018
Results day today and it is fantastic news, the cancer did not spread and they got all the cancer out. We are so happy. This was quite a short appointment as we didn’t really have any questions to ask. The doctor said we just need to wait now for the next oncology appointment to discuss the radiotherapy and hormone treatment. The breast nurse asked whether I was doing my arm exercises still, which I confirmed. Sometimes these have been difficult with the soreness from the lymph node biopsy, but well worth doing and getting the range of movement back.
2nd July 2018
GP appointment today, I was hoping to be signed back to work, but he signed me off for a further month, hopefully back to work on 6th August. However on a positive note, I can now drive again!!!
4th July 2018
I went out for my first drive today and I popped into work to catch up with everyone over our lunch period. It was great to see everyone and have a good old chin wag and find out what has been happening at work, how the fundraising is going and to meet an old colleague Keeley who is temping for us whilst I am off recovering. I have missed everyone and realise how fed up I am with daytime tv!!!
I only spent a couple of hours at work, then home again and slept for a couple of hours. I didn’t realise just how much it would take out of me. Although my scars are healing well, my body still needs to rest and take it easy.
16th July 2018
It’s nearly 5 weeks after my operation and my scars are healing well. I am still sore in some places and still look smurf like, however, after reading other peoples blogs, this can take anything up to a year to fade and in some cases it never does. But having a blue tinge is a very small price to pay for being cancer free.
I still get tired and need to rest, but I’m looking forward to returning to work 3 weeks today. For those who know me, I do get bored easily and I love my work!!
I’m still doing my arm exercises and think I might actually have a go at making some bread tomorrow. I think all that kneading will be a great arm exercise and hopefully, we’ll have some lovely bread at the end!!
I still haven’t had that ‘Oh my goodness’ moment about having breast cancer, perhaps I never will. But I do hope that this diary will help at least one person. Please do your monthly breast checks (and yes men, that includes you!) and when invited do go along to your breast screening. It really does save lives. Just half an hour out of your daily schedule. In the grand scheme of things, what is half an hour?
I will leave you all in peace now for a few weeks unless I hear from oncology as to when the radiotherapy and hormone therapy starts.
6th August 2018
Today was my first day back at work. I haven’t gone back on reduced hours, I have gone back for full days. I must admit by the end of the day, I was shattered!! It was so lovely to see all my work colleagues and to catch up with some of our supporters who have been wishing me well during my treatment.
7th August 2018
Slept like a log, a full 12 hours and didn’t wake up until the alarm went off this morning.
8th August 2018
Again, slept like a log. Being back at work is so good, I feel useful again and part of society.
9th August 2018
Today I met with my Radiotherapy Oncology Consultant, a very nice man. He went through what I could expect from the radiotherapy; what creams to use prior to the radiotherapy, through treatment and then for a few months afterwards. He also prescribed 20mg Tamoxifen to be taken once a day for the next 10 years! The appointment lasted an hour and a half. He has also referred me for my CT planning appointment on 28th August.
10th August 2018
Now on a well needed holiday for 2 weeks to Scalpay in the Outer Hebrides. You may be thinking ‘a holiday’ after 7 weeks off, but believe me, I need it!
It was such a relaxing time spent with my wonderful husband Thom and my faithful companion, Lucy! She does love the beach, just look at that lovely smile.
28th August 2018
Back to work today after my fabulous holiday, I also had my CT Planning appointment today. They measured my height and current weight and I had to give a urine sample to confirm that I wasn’t pregnant. I am 51! But they have to be sure.
I had a lovely appointment with my radiologist, she went through all the details again to make sure I knew why I was there, and which breast was going to receive the treatment. I was then taken into the CT Scanner room and positioned on a very hard and uncomfortable bed with my arms raised above my head. This is the position I will be in for each of my 15 treatments. The scan didn’t take very long at all around 10 minutes. They then took lots of photos – having breast cancer is not a very private thing! This was so they can track any changes in my skin and scars throughout the treatment.
Then came the bit I was dreading, the tattoos! Although I had 2 done when I was younger, for some reason I was not looking forward to these. However, they were painless and to be honest they look like very small moles. 3 tattoos, one in the middle of my breasts and one either side under my arms. My husband has suggested that once this is all over to have 3 little gerberas’ (my favourite flower) tattooed over the dots, I think I will leave it for a long time before I decide.
I have also received my schedule for my radiotherapy for the 15 treatments. They start on Wednesday 5th September and will be Wednesday through Sunday, giving me Mondays and Tuesdays to rest from the treatment.
5th September 2018
Arrived too early for my appointment, so got a coffee on the way in. We made our way to the waiting room and now I am ready for my first radiotherapy treatment. Sat in the waiting room with Thom looking at all the people there. What were they thinking, what were they feeling? Were they as nervous as I was?
I was called in. They confirmed all my details were correct and I was asked to strip to the waist which I duly did and laid on the bed. They positioned me in line with my 3 tattoo dots and explained that they would be in half way through to take some images. They then left the room and the music stated playing.
The machine started up and started moving around. About 8 minutes later, the ladies re-entered the room and I asked them when they were going to start as I had not felt anything. They advised that I was already half way through and they were just there to do the images. They then left again, and the machine started up again. What seemed like just a few minutes later, they popped their heads round the corridor and said, ‘That’s it, all over, see you tomorrow!!’
I got dressed and went out to meet my husband. As we walked out, he asked me how it was, and I said that it was surprisingly okay and that I hadn’t felt anything! Off back to work now.
I had treatment on the Thursday, Friday, Saturday and Sunday that week and by the Sunday it was starting to look like I had developed a sun tan on my breast! Moisturising 3 times daily as advised.
Starting to feel very tired after each treatment. My husband is coming to all the treatments with me and it’s a good job as the minute I get in the car I just want to go to sleep. This is okay on the weekends as I don’t have to go back to work! At our hospital you get a free ticket for parking during treatment, but the visits are still costing a small fortune in skinny decaf flat whites!
12th September 2018
Week 2 starts today and I’m starting to get a bit sore now as well. The treatment is not painful but as the treatments go on, my breast is getting very red and sore, very much like sunburn. The lovely radiographers have given me some cool gel pads to use in my bra to try to ease the soreness. Apparently not everyone reacts to the radiotherapy and I have spoken to some ladies who have had no effects at all.
15th September 2018
Today I am not up to taking my elderly mother shopping so my wonderful husband is doing that for me. She likes spending time with him but he does not like shopping! So, after my treatment this morning I am now resting whilst he is out with Mum.
17th September 2018
I am not well enough to go into work today. I am very uncomfortable and extremely tired. I am very lucky that my work is fantastic and arrange cover for when I am not in. Today I stayed in bed and watched very bad daytime TV with my trusty companion Lucy!
Unfortunately, I have not been into work all week and have just been tucked up with my duvet only venturing out for my last week of radiotherapy, coming home and sleeping. My radiotherapy finished on Sunday 23rd and I am so relieved that it is all over.
I am still using the cool pads given to me but have not been able to wear a bra for the last week or so. A lovely lady who has been through this suggested that I try some bra crop tops. These have been great, and you can get them in most supermarkets and shops now and are not expensive. To be honest, these along with the post-surgical bras have been a godsend. I don’t think I will ever go back to wearing a boned bra.
24th September 2018
Back at work today after a week off. I am aiming to finish the week as I need to get back into a routine. I have plenty of paracetamol with me and am taking them every 4 hours to keep the soreness at bay.
28th September 2018
Yay, full week of work! I am out all day today at a training day with one of our recycling partners and feeling exhausted, but I am determined to get through it.
22nd October 2018
I am now finally in a routine at work and have only had 1 further day off since my sickness in September. The tamoxifen is still making me feel nauseous so I will give it a few more weeks and if this doesn’t improve I will speak to my GP. It seems to be worse when I come to the end of a packet and start a new one which is always a different brand. Perhaps the GP can request the same brand each time, I will investigate this going forward.
I had a great weekend with Thom. We went out and bought my reindeers and sleigh, but you won’t get to see them until my final diary entry in December!
If I have learnt anything along my journey, it is to be open and honest with family, friends and colleagues so that they can support you. I have had fantastic support from work colleagues who have helped to keep my spirits up when I have been feeling down. My family and friends have understood when I haven’t felt like going out or meeting up. My husband, Thom has been my rock and has been there every step of the way and his work has been great by allowing him time to come to all my appointments with me.
I know that everyone is different, but it really does help to share how you are feeling. If you don’t want to talk to people you know, try Macmillan or a Maggie’s Centre, there are always people out there to support you.
My final update will also include details on what will hopefully be my final appointment with my oncologist. Then I will hopefully just be on the tamoxifen for 10 years and have yearly breast screenings for the next 5 years.
11th December 2018
Wow! Christmas is nearly here and as promised my wonderful husband Thom has purchased the reindeers and sleigh! Although he says he has kept the receipt, just in case!
I managed to get some anti-sickness tablets from my GP and within a couple of hours of taking the first one, I felt normal. No nausea for the first time in months. I know it is another tablet, but if it helps then why not. I can apparently take them as long as I need them to counteract the nausea with the Tamoxifen.
My scars are healing, and the radiotherapy soreness is easing. It looks like I fell asleep in the sun on one side!
This will be my final entry into this diary and I just wanted to let you know about some things I have learned throughout my journey.
- Make sure you include and share with family, it is vitally important to have their support
- Be positive every single day no matter how hard it is
- Treat yourself during your treatments, mine was always a skinny decaff latte before each of my radiotherapy sessions
- Take time for yourself and relax, the washing will get done at some point and so will the cleaning! Make use of friends and family that say, ‘if I can do anything just let me know’!
- Take a note pad to all your appointments, it is easy to forget information when medical staff are talking to you, take notes and make a note of questions for your next appointment
- It takes time to heal both physically and mentally – do not be too hard on yourself
- I will always remember this quote I read – ‘Cancer didn’t make me a survivor, I always was’ I don’t know where I read this but it is very true
- Let others help you, as a carer for my mum I had to pass some of the responsibilities over to my husband such as taking her shopping or to the doctor. Remember you cannot do everything all the time
- Set a goal, something to work towards – mine was Christmas
- Last but not least, get a good bra!!! Comfort makes all the difference. I am still wearing post-surgery ones and they are just so comfy! When my scars have completely healed, I will treat myself to some lovely ones, but not just yet.
I know that for everyone, it will be different. For me, I have come through the other end and I am really looking forward to starting 2019 happy and healthy alongside my husband, family, friends and amazing work colleagues, who have all been a tremendous support. I am so lucky to be loved by so many people – thank you all.