Gillians story

My Journey

Gillian Slater – HR Manager – 52.

When asked to do this I thought “Wow” where do you start. Cancer has changed my life so much since diagnosis that it doesn’t seem possible or real. I can only say that I am a far different person than I was back at the start and it may shock you when I say that it’s changing me for the better.

At the time I discovered my “temporary lodger” I was working full time and also doing daily 5 hour round trips to visit my critically ill sister in Stoke. She was in an induced coma at the time due to major organ failure and not being there was not an option. My left breast felt very painful and bruised, like I’d banged it. I regularly check my breasts so didn’t think anything of it and didn’t think it was something that needed checking, plus I was way too busy anyway. I pushed it to one side and carried on with work and daily visits to the hospital.

Two weeks later (6th August 2017) and I still had the same problem, plus I had a huge golf ball size lump (seriously) and the skin was puckering up underneath the breast. I had originally thought it might be mastitis or a blocked duct as it was really painful, and the lump had come from absolutely nowhere, but now I was scared. I rang the doctors on the off chance I could get an appointment and managed to get one there and then. I can’t remember her exact words, but the receptionist was keen to get it checked straight away, I just remember being surprised at how quick she got me in. The whirlwind had begun.

The doctor was very calm about it, examined it, got a colleague to check and then made an appointment with the hospital for me “just to check it out” It was a huge lump however he reassured me that these masses often turned out to be benign and not to worry about it. The appointment was made for the week later. I decided at that point to let our older kids (18 and 27) know that I had a suspicious lump and was going to get it checked out, I just didn’t want them to get a nasty shock when it was confirmed.

I think the doubt and potential reality hit that day, I don’t know how or why but I just knew it was cancer. I won’t lie, waiting for that first consultant’s appointment and sitting in that waiting room was hell, but what we didn’t know was it was going to get a hell of a lot worse. My breast consultant did a thorough examination and I cried throughout, she asked me why and I told her I knew it was cancer, she didn’t dismiss me and asked me to run through why. I pointed out the puckering under the breast, the lymph glands that felt sore and enlarged and the shape and feel of the lump, she agreed calmly and matter of fact that she was 99% sure it was cancer. I liked her there and then and knew she was the best person for me. At that point I went into battle mode and my husband’s world ended. I won’t forget the desperate noise he made or how angry he was that she hadn’t even run any tests yet, so how could she know in his eyes! This is where is started getting difficult, as I was relieved I knew what I was dealing with and wanted answers to questions and thoughts and he was in complete denial and couldn’t bear to face the reality of it, even if she was 1% wrong. She made an appointment to see my Oncologist there and then, even before I’d had the mammogram, ultrasound and biopsy, she was that sure. My husband was offered coffee and to this day he still says (Oh that was going to make it all better wasn’t it)

I’ve always been a keen internet researcher, I’m a bit (a lot) of a control freak and need as much information as is available. This is where I realised I knew nothing about what breast cancer was, how it was treated and the huge range of options and scary shit that’s out there. I remember thinking after hours of research “I hope it’s not Triple Negative” but more on that later. I spent hours researching, finding information, looking at options, writing questions down and wanting answers. In the meantime, my husband went to pieces, cried constantly and simply couldn’t function. He couldn’t and wouldn’t discuss it. In his mind we still had that 1% chance and he wasn’t letting that go. Did this make me mad? hell no, it made me think this was the normal reaction and most people would be the same, I’m just not most people. I remember his sister giving him absolute hell and telling him to get a grip and step up for me. I also remember I told her he can be any damned way he wants, this is his life as well we are talking about. At that time, he was also recovering from Pneumonia and Sepsis, he’d been admitted to hospital for 10 days in early June and was still off work. He ended up going on anti-depressants as he just could not cope with the stress and anxiety of my diagnosis. I tell you this not to shame him, he is the most amazing husband and I love him with all my heart, but it demonstrates that the people around you that you love, spend time with or must tolerate will all react differently, and you must cope with that as well as your own emotions.  The shock waves of a cancer diagnosis spread wide and fast, every person in your life is touched by it, no matter if they are very close to your heart, or the butty man you may see once a week. People’s perception of you changes, you change, you can’t control that, but you can sure as hell have a say in it by word or deed.

This is where the cancer diary kicks in. I look back at my normal diary and laugh, yes, I was still doing the 5-hour daily trips to see my sister and working but suddenly cancer, diagnosis and treatment becomes a tsunami of priority that’s equally devastating. Sod what you have planned or need to do, family, work, friends all become secondary to the demands of your cancer diary, you can’t put your life on hold, but you have to adjust and adapt, it gets taken out of your control. Friday 11th brought a round of tests including Mammogram, ultrasound and biopsy, I took a friend for these, hubby wasn’t coping well, and I just didn’t feel the same as him, I knew what it was and just wanted to get on with it. The ultrasound for me was the deciding factor, you can see what’s happening on screen and I asked questions throughout (not how it’s supposed to happen, but I told her I knew and that the consultant was 99% sure, the ultrasound specialist confirmed it there and then). How big was the tumour (43mm) how many lymph nodes affected (4) Ok now I know what I was dealing with, lets soldier on – WRONG. Now we need to discover how far it’s spread!!! WTF, you think the worse thing is knowing you have cancer, it isn’t. Being told matter of factly that we need to check where’s it’s gone, how far its spread and even how long you may have is the kicker. Going home and telling Tony about the ultrasound was awful, then telling him I was scheduled for a CT scan to see how far it had travelled destroyed him all over again. You think when you get the diagnosis that it can all be fixed, the reality of it possibly being terminal, no matter how manageable, turns your life upside down (as if it wasn’t already) that weekend and the following week had to be our worst.

CT scan – Tuesday 15th August 2017, as a self-confessed control freak I found this the hardest to bare. I had convinced myself the cancer had spread as I was having really bad pain in my shoulder and back and had for quite a few months. Unlike the ultrasound I couldn’t see what was happening on screen, my mind and body were screaming to be on the other side of that screen looking at what they were looking at, this was the first and only time I had a complete breakdown and sobbed throughout uncontrollably, the stress and fear got to Tony and I and this week was a living nightmare for us. I had to knock my daily 5 hour round trips to see my sister in hospital down to every other day, I till didn’t know at this point if my sister was going to pull through or not, I was still working full time and dealing with what was going on in my head, my head was battered. I was torn with feeling guilty for now being there every day and being scared I would crash with the stress and lack of sleep.

Friday 18th August – Back to see my surgeon/consultant Miss Chagla, to be honest we didn’t hear hardly a word of what she said that day, we were both so terrified of a secondary prognosis that we cried with relief when she formally diagnosed the cancer in the breast and lymph. It confused the hell out of her and she asked why we were so upset, given that I’d told her that I was convinced it was cancer. She was amazed that I had accepted the cancer diagnosis so well and reassured us that they didn’t believe it had gone secondary, apart from a tiny spot in the lung and liver which they were going to keep an eye on (apparently its very common)

She then informed me I was to see my oncologist Dr Shripadam that day and we duly and naively walked to his department. I say naively as you are at that point completely in the dark regarding the process, despite the emotional whirlwind. We had a discussion and to be honest it’s a bit of a blank as your brain disengages with your body, you become incapable of taking things in or processing what’s happening. I remember him asking me what I was scared off most, I said dying, being sick and losing my hair. He reassured me I wasn’t going to die, confirmed I would more than likely lose my hair, even if I tried cold cap and that I wouldn’t be sick unless I suffered with bad travel sickness, I laughed at that one as I suffer with chronic travel sickness which was a long-standing joke in my family. He reassured me he would ensure the bet anti-sickness was included and I would have three different types!!

I had done some reading up on breast cancer and treatments, so some of what he said made sense, but the dreaded Triple Negative came up and my heart skipped a beat. It was the one diagnosis I didn’t want as this can be a very difficult and aggressive cancer to treat. And boom, there you go, it was mine to have and deal with. I remember asking him if I was ok to go on holiday as we were due to go to Ibiza the following week “oh no” was his reply “ your starting chemo next Thursday” I’m not quite sure what I expected but it certainly wasn’t that, it was too soon, I needed time to process it all, to get organised, to make plans………Nope, cancer doesn’t give you that luxury, everything else gets swept out of the way in the whirlwind after diagnosis and the start of treatment. Tony and I left shell shocked and terrified.

I would at this point say how valuable a daily diary would have been. Tony and I discuss how we were like two terrified rabbits in the headlights during that time and it would have been helpful to have kept a daily note of events as it goes so fast and so much happens. One thing cancer gives you is a strength you never knew you had. You have to keep going, you don’t have a choice. People are different but I’m a “s***t happens” type of person, its how you deal with it that counts and I decided that I was fighting this on my own terms. We started to change that day, but we didn’t know it, the armour plating started growing tiny bit by tiny bit.

Tuesday 22nd August – First appointment at Clatterbridge to see one of my designated chemo team. By this time, I had a million and one questions, and fears and Nicky was amazing, we came out feeling for the first time that we could and would be able to cope. The only negative I found, and this is the case right the way along is, that they can’t tell you how you are going to be with any of the treatments, it’s so individual, the side affects you will get, how you will feel, how tired you will be. It was the one frustrating thing that followed me right the way through but is something I’ve learnt to adapt to and be patient with (I don’t do patience) so no matter how many questions I had they couldn’t answer any of these. I also get my PICC line fitted and this is to this day one of the best things I made a choice on. Saves so much hassle with collapsed veins and constant injections. Its presence never bothered me, and I happily wore sleeveless dresses/tops with no problem.

Wednesday 23rd August – The day before chemo!! Back to my sister. I was at this point still visiting every few days, she had come out of the induced coma and they had hoped she would survive despite her acute health conditions. We had discussed her moving closer to us previously (her husband had passed away 18 months previously and she had little family/support in Stoke) she had given me the go ahead to look at renting a property for her and getting her transferred to a hospital near us. The chemo schedule obviously fast forwarded this process as we hadn’t found her a property, I didn’t know how ill I would be on chemo, it could be months until I could undertake a move for her………….So with two days to arrange movers we packed up her whole home on the day before chemo 😊 it took 12 hours, not helped by the fact my car keys got lost amongst all the boxes packed  up and now an hour on their way to Widnes!!! Give them their due the guys stopped en- route to find them to no avail, we used the time until they returned with my spare keys to visit my sister, so killing two birds with one stone, and boy did that day keep us occupied😊 Life has to continue. The daily, or not so daily grind has to be attended to and makes no allowances that you have cancer and need treatment.

Wednesday 24th – First chemo day, I’ll be honest I was terrified, Tony was terrified, we didn’t sleep at all the night before but just couldn’t talk about it. I was convinced something horrific would happen, my head would blow off, I would have a heart attack, I would be sick constantly. Totally ridiculous but it amazing how the mind plays tricks. I felt nothing apart from a weird taste in my mouth. First chemo over, still terrified of something happening we travelled home. I felt slightly tired but otherwise ok. Then some of the oddities of chemo hit, I say oddities as it’s the weird and wonderful side affects you don’t expect and that can make chemo challenging when not managed. With this first batch (Doxorubicin and Cyclophosphamide (AC)) I had chronic insomnia from the steroids for the first two days after chemo and then the wonderful constipation kicked in, never, ever, ever underestimate constipation for making you feel utterly miserable. I never suffered with this before and it was a shock to the system. I struggled with it until the next chemo (two weeks later as I was on 4 cycles of this batch fortnightly) You always get asked about side effects at each chemo and those two were quickly and promptly sorted with prescriptions and advice on how to adapt when to take post chemo tablets. The main thing is to raise changes asap and get advice. 

Work – As a HR manager this is an area I feel incredibly passionate about on so many levels. I’m very lucky to do a job I love with a Company and Manager that are incredibly supportive and yet I feel very vulnerable after diagnosis. I decided to carry on working with a proviso to advise them if I felt unable to, I didn’t know how I was going to be. Work keeps me sane and focused but not everyone feels the same or has a Company that are supportive. I started working from home two days a week and being in the office three days, I have full access on my laptop to be able to undertake my role and meetings where scheduled around my treatment and availability. Not everyone has a job they can do from home, or have the luxury of having full access, I’ve taken very little time off sick during chemo as I felt mainly well throughout. I pared my days down to two per week and three at home as chemo progressed but still feel I’ve managed work well and been able to maintain my job with adaptations. I issued an email to all employees at the beginning of my diagnosis to advise them of my diagnosis, to tell them how I planned to continue working if possible and for them to ask me any questions they wanted and that I didn’t want pity and sadness, just support. This was incredibly helpful for them and me as it took away that awkwardness. Quite a few people expressed how inspirational they found it and how much easier it made it to talk to me both professionally and personally.

Chemo progresses well and my 2nd treatment two weeks later is easier and less stressful. I made a decision to cut my shoulder length hair short in preparation for in falling, I love my hair long and thought it would  be upsetting to have it cut, to be fair it wasn’t as bad as I had expected and my short hair was the subject of debate as many thought it actually suited me more than the longer hair I’d had for years, it didn’t last long though as ten days later is started falling. I expected it to come out in clumps but mine became very sore at the roots and started falling out in a shower of individual hairs. I had already sourced a fabulous wig maker and with my wig nearly made I made the decision to shave my hair. My choice, in my control. Tony had the honour of shaving it for me and it was a relief to get it off and not watch it all come out. Having no hair is both liberating and bloody cold, I started my collection of caps and hats as they are needed, especially at night in bed. My wig fitting was finalised 6th September and I’m in possession of a wig that people tugged and wanted to check out as they didn’t believe it wasn’t real. It makes me feel good and normal. I’ve also started to have my nails done at the salon on a regular basis with dark gelish  as I’m advised this protects the nails from chemo and stops the nails cracking and falling off.

Chemo continues to progress well, I get a sore mouth and some palpitations which are checked with an ECG but all’s good.  I feel fine though tired, more so just after chemo and it’s only the first few days I feel off. 19th September I have a MUGA scan to check my heart and that’s fine.

10th October I have an ultrasound marker fitted in my breast, this indicates the spot that the tumour is sited and makes it easier to locate should chemo be successful to the point that the tumour shrinks right down. Its less invasive than the biopsy and I hardly feel a thing.

19th October the 2nd batch of chemo is due to start (weekly Paclitaxel and three weekly carboplatin), I feel quite nervous about this as I’m used to AC, I know what to expect and I although this chemo is supposed to be less harsh than the AC I have been warned that you can have a reaction to it. They give you Piriton to reduce the reaction to it, what we didn’t know or expect is that I have a massive reaction to the normal dose of Piriton to the point that I’m virtually comatose for 12 hours and acting like I’m, totally plastered 😊 Chemo went fine, a fact I’m totally unaware of as I’m out the game. I sleep till 8am the next morning. This chemo doesn’t give me issues with constipation and insomnia, but I feel incredibly tired.

The 2nd week goes better with the Piriton reduced to a half dose, despite this I sleep for virtually two hours of treatment, great for me but boring for Tony who has been able to accompany me to every chemo treatment, he doesn’t relax after last week and watches me like a hawk, very unnerving when you do wake. The team find my odd reaction hilarious and take the mickey. By this time we have a really strong bond with them and chemo is relaxing, a laugh and a routine that becomes comforting and secure.

Weekly chemo continues for another 10 weeks, I become progressively tired now and drop down to 2 days a week at work. I struggle more with tiredness the final 6 weeks and I find it hard to balance work and chemo. I have a blood transfusion 31st October as the chemo is making me anaemic. Kerry is transferred in this time and we find her an apartment to move into. We also transfer her belongings in, in preparation for her coming home from hospital. My daughter also moves out into her first home with her boyfriend. This wouldn’t have happened pre-diagnosis as she’s only 18 but when you get a life changing diagnosis your outlook changes and life is just too short. We want her to be happy and grab life by the throat. We have fun picking furniture and helping them move in but its incredibly tiring and I get easily exhausted.

Friday 15th December – Works Christmas party, I wasn’t sure I would be able to attend but I’m having a really good day. Nails, fake tan, makeup done, wig on and feeling fab, we have a great night. I sleep most of the weekend but it was worth it.

I ‘m surprisingly feeling upset about chemo ending, I thought I would be happy and look forward to it but the team become like family and their presence is reassuring and safe. Chemo is not undertaken the 2nd to last week as I’m just not strong enough. The last week (11th Jan 2018) is incredibly emotional and it’s hard to say goodbye. I get to ring the bell and is such a lovely ending despite the emotions.

20th Jan, Tony and I fly out to Reykjavik for 4 days before surgery, not recommended due to DVT risk but I needed this break given we had cancelled two previous holidays due to Tony being ill and then my starting chemo. We have an amazing four days and come back rejuvenated and happy. Iceland is amazing and we get to see and do more than we had hoped for given I’d only just finished chemo.

Surgery is planned for the 3rd February, (lumpectomy and 4 lymph node’s removed) I’m not looking forward to the actual surgery but on the other hand glad to be moving onto stage two of the process. Pre-op goes ahead on the 31st Jan and its getting closer. Friday the 2nd I have various xrays and ultrasounds to mark the site for surgery and inject dyes that will help Miss Chagla pinpoint the tumour spot and lymph to be removed. I also run out to get two post surgery bras as I completely forgot to get them. Marks and Spencer’s do a fab range and I’m pleasantly surprised.

3rd Feb – Surgery day, we arrive at 8am to be told I’m first down, I’m suddenly caught up in a flurry of pre-op prep, surgical stockings and a waiting surgeon, no time to think about it. Tony is allowed to walk me to theatre. Laid out on the bed it becomes real and I’m overcome with emotion which is met with a good amount of hand holding by one of the team. My veins have collapsed and unfortunately I don’t have my PICC line anymore as that was removed at the last chemo, the shunt has to go into my foot as they can’t get a line into my arms. (Really wish I’d kept that PICC line lol)  I wake up a few hours later to another nurse holding my hand tight and she doesn’t move for a long time. It takes me a while to recover as I’m always very badly sick but I’m allowed home later that day and we get home at around 7.15 p.m.

Surgery has gone well, I have very little pain and discomfort and don’t have to take painkillers. I’ve had two incisions, one just under the breast and one in the underarm to remove the lymph.

8th February – Leakage, I wake up at 4a.m thinking I’m having a hot sweat, only to find its one sided. Fluid has built up under the underarm incision and then burst out, we take a trip to the local A&E to get it checked out and everything is fine, no infection and its quite common to get a fluid build up.

9th February – Review by Miss Chagla to check the surgery, she drains it via needle as its built up again and is really uncomfortable. It feels better and she’s happy with surgery. I’m due to call back the following Friday if fluid build up is a problem. The fluid build up continues the following week and is really painful but it self-drains again on the Thursday and I dont go to the appointment as I feel it unnecessary, big mistake as I now have an infection brewing. I see My oncologist the following Monday and he puts me straight on antibiotics, I have to attend the breast clinic a few times to get it checked out and dressed. I end up having to dress it up to 6 times a day as it starts leaking constantly, I have a reaction to the adhesive dressings so have to use big pads stuck in my bra, its like have a constant period underarm but better than having the fluid build up.

26th February, another review by Miss Chagla results in the wound being cleaned out and a drain inserted. Daily dressings are required at the hospital but at least it will get checked every day.

Well here we are, up to date and ready for the next step. Radio therapy is planned for week commencing the 19th March providing this wound heals ok.

Do I feel bitter and angry…. Hell no, like I said s**t happens and life goes on. Tony and I are stronger, happier and more content with life. Cancer changes your view on things, cancer is stressful yes but life becomes less of a stress and you start appreciating your life and the people in your life more. You actually start living it properly and stop sleep walking through it. My oncologist hopes for a full cure but I’m prepared for it to come back, as it may well do and I’d happily go through it all again. Life becomes very precious and you stop being obsessed with trivial matters, in the meantime life is for living not regrets.

My journey is my own. No two of us will go through the same, but we remain bound by the common factor of being touched by Cancer. We have a choice of allowing that boot to grind us down to nothing or give us a kick up the butt to motivate us into a better more fulfilling life, I know what I choose. I’ve done my journey my way and will continue to do so. We all have choices and can take control of something that is so overwhelming it can make you feel like your drowning if you let it, but just remember there are life guards all around you, watching your back and not letting you get out your depth.

If you have any questions I can help with then feel free to reach out and ask, we are here to support each other.