The reality of being treated for Breast Cancer -Part 3 - Chemo Day

Chemo day dawns. I had a Hickman Line fitted in January which enables the nurses to take blood, give me drugs (chemotherapy, anti sickness and fluids when dehydrated)

I have found it tricky to get a suitable dressing that doesn't irritate my skin, quite badly at times. The lovely nurses, especially Carol (you'll see her in the YouTube clip) in pre-assessment have been on the case and the one below is mainly tolerable!!! But as you can see from the picture even the micropore tape is irritating the skin....a constant battle!!

Last time I had chemo I didn't have a central line and had terrible problems with veins, ending up

with my final chemo in my foot. Far from ideal!

So this was certainly the best option psycholog   - ically this time around and has already proved to be my best friend! When I was admitted after Round 1 with severe side effects from the chemo - dehydration, sickness and bone pain they were able to give me fluids, pain relief and anti sickness drugs quickly without the difficulty of finding a vein and inserting a cannula. This time around they can also hook up the chemo drugs.I have a stitch in my neck that hadn't dissolved where they inserted the line and have needed

antibiotics as it started to get infected. So they managed to get some out yesterday and the rest hopefully today as you will see!

The chemo drugs I am having this time around are Docetaxel http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/docetaxel

and Carboplatin 

http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/individualdrugs/carboplatin.aspx

There are a raft of side effects from both drugs, with hair loss being one of them from the Docetaxel. So I'm trying the cold cap to retain my hair for as long as possible. It helps about 50% of people retain about 50% of hair. It's definitely working as I have lost the rest of my body hair. Looking on the bright side no shaving legs and underarms and no Nair in sight!

My head hair is shedding after each treatment so I've now got a wig and would shave it if it becomes patchy. It isn't losing the hair itself that's hard it's that currently I still have my anonymity and privacy. You can hide your pain, sickness and upset when nipping in the garage to pay or when teaching a class but once the hair's gone everyone knows your business. And aren't afraid to question you about it....even complete strangers. Believe me I've been there before unfortunately. This technology wasn't available for me to try 25 years ago.

My friends have been coming with me and Sean sometimes too. Including one of my oldest friends - Ainsley (we have been friends since we were 7 and 8 years old in Primary School) She was there by my side the first time and is again this time. It means a lot.

I am in hospital for several hours every 3 weeks for this treatment and the following video (click on the YouTube link below)will give a good idea of what happens. As it stands I will be having 6 cycles and this was my third.

The Reality of being treated for Breast Cancer - Part 2 - Steroids

As part of the cancer drug regime I have to take dexamethasone (steroids) these have a number of benefits - they can help if there is an allergic reaction to any of the other drug, some ant-sickness properties and also have anti inflammatory benefits. I spoke too soon and said to Rachel today that they don't seem to affect me, such as keeping me awake, hmmmmm. It's nearly 4am and no sign of going to the Land of Nod yet :-( and I have to be up again in 2 hours. Sigh. I guess no surprise after 32 tablets today!

But I did have REALLY good news at my clinic appointment today (after waiting an hour and a half past my appointment time - prolonging the agony!) That the MRI shows the cancer is responding to the chemotherapy and the main tumour and satellite ones are showing evidence of shrinkage. A result that is far more than I could have hoped or dreamed of! So I continue with the chemotherapy, probably for another 4 cycles, 6 in total but one step at a time.

Thanks so much for the support that still continues to flood in: messages, posts, cards, meals, lifts for me and the kids etc etc We couldn't do it without #TeamVicki

The Reality of being treated for Breast Cancer - Part 1 - Results Day

I have seen a few blogs and posts recently that make having treatment for cancer look like a walk in the park. As it's the second time I have been treated for cancer I can assure you it's far from it, so thought I'd share my experience on my Blog as I go into Round 3 of my chemotherapy treatment. It may help #TeamVicki understand what we're going through (I say we as it's not just me that's suffering but the whole family) and also help people understand what cancer treatment entails.

I have chosen to keep working during my treatment, sometimes that isn't easy, whilst dealing with side effects but it's a welcome distraction and I love my job. I only started my lectureship too when I was diagnosed and started treatment!

I had a specialist Breast MRI last week and have waited 7 days for it to be reported on and had an appointment in clinic with my Oncologist on Monday afternoon. This would determine whether chemotherapy I am having any effect on the cancer and whether we continue on that course of treatment. Nerve wracking times!

A frequently asked question - How did I know something was wrong?

I thought it was about time I posted about how I knew to go to the doctor and ultimately was diagnosed with aggressive Stage 3 invasive Ductal Carcinoma with metastases in the lymph nodes. 

People understandably ask me if I found a lump. It's best to start at the beginning. I found a lump or my left breast felt 'lumpy' way back in the early summer 2015. I was going on holiday to Spain and I made an appointment for when I was coming back (as I had that doubt 'oh maybe it's because of my period.') and whilst I was in Spain I shared my worries with my friend Rachel. I went to the doctors on my return, she could feel it too and referred me. When you are referred in Leeds you have to be seen at The Breast Unit at St James' Hospital within a fortnight and sure enough I quickly received an appointment. 

I was very worried and my friend Dawn insisted she went with me and it was fab to have some company as we were there all day. They explained that because I was over 40 they do a mammogram both sides and then an Ultrasound on the affected side. They were very reassuring and explained everything to me, particularly what ‘normal’ breast tissue looks like. I had the tests then was called in for more pictures of the right side. When I went in I questioned this but the radiographer was insistent it was the right side. It transpired the left was clear, that it was glandular tissue. They then did an ultrasound on both sides and found an area in the right side (what they had seen on the mammogram). They said they were confident it was a fibroadenoma.

https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/benign-breast-conditions/fibroadenoma

It was obviously a shock to go with a possible problem in the left side yet they found something in the right. I met a lovely consultant – Shireen Mackenzie – who was very knowledgeable and reassuring. She said despite them thinking it was benign, given my history and the misdiagnosis, they would go ahead and do a vacuum assisted biopsy to get a definitive answer. They did this they following week (MOST unpleasant :-/ https://www.hey.nhs.uk/patient-leaflet/vacuum-assisted-biopsy-vab/ ) Another few days and sure enough we returned and it was confirmed thankfully as benign. It was a really worrying few weeks and I was really scared.

The lumpiness never really went away in the left side and I returned to the GP that November and was again referred to The Breast Unit. As I’d had a mammogram only 4 months earlier I only had an Ultrasound. Again, I was told it was glandular tissue and the only thing on the Ultrasound was ‘thickening’ above the left nipple. So again, I went away reassured.

I am telling you this as it’s key to what happened in 2016. I don’t remember when I felt a lump in the left side again. I don’t think I could feel it when we were in Portugal in the Summer, but I can’t be sure. I think I first felt it in September, but obviously assumed it was ‘glandular tissue’ again, so I thought no more of it. As the months went on I did continue to feel it and I suppose it got bigger, so much so Sean could feel it when I pointed it out. It began to play on my mind a little and when I noticed a tiny stretch mark above the left nipple, there were none anywhere else, on either. It reminded me of breast awareness information that tells us to look out for skin changes. I thought I should get checked out again and tried for a GPs appointment and couldn’t get one that ‘fitted in’ with our hectic schedule but I still wasn’t really worried at this stage and to be honest I wasn’t at ANY stage. I made an assumption…wrongly…that it was nothing to worry about. When Sean agreed in December it felt quite ‘prominent’; he can never feel anything like that…lumps and bumps, babies kicking etc. so again it niggled at me. 

Also another myth to 'bust' is that my breast has been quite painful and I always assumed the comment that 'if it hurts it won't be anything bad or sinister' held true. Wrong. Malignant AND benign conditions can cause pain, mine did and still does, quite a lot. I'm sure I'm not the first and won't be the last to assume this based on misinformation. It helped me, along with a combination of events to make a wrong assumption and therefore reassure myself but ultimately put off getting checked. My cancer got bigger in the meantime and spread within the breast - a main tumour and 9 satellite smaller tumours or nodules, into my lymph nodes too. It has major implications for treatment - needing chemo, surgery and radiotherapy. No reconstruction possible at the time of mastectomy due to needing radiotherapy. Definitely a mastectomy not a lumpectomy due to the area involved. Hindsight is a great thing but I can't help kicking myself. Yes I know now and am getting something done but this will involve more treatment, a hugely prolonged timescale and inevitably more pain, suffering, psychological effects so DON'T PUT OFF GETTING CHECKED! 

On my Birthday, December 15^th, I met my lovely friend Rachel, who had been undergoing chemotherapy for breast cancer, for a coffee. I ended up telling her about the lump and she was insistent I get it checked. I made an appointment when I left, for the following day with the GP. Rachel had told me she had gone to The Yorkshire Clinic to a One-Stop Clinic where you see a consultant, have a mammogram and ultrasound, any biopsies if required then get the results of the scans all on the same day.

As I am covered by Private Medical Insurance and it was so close to Christmas I thought I may get seen quicker via this route as it would be New Year for the Leeds Referral. I checked both the Clinic and the Insurance who said they would cover me and I could be seen on the 20^th. The GP again could also feel the lump but thought it may be a cyst and did the referral. I still wasn’t worried, not really. Unless I felt it when showering or dressing, I didn’t even think about it. I went to work on that Tuesday and was in a meeting until 1.15pm and dashed off to the hospital for 2pm, still not worried. It hadn’t even crossed my mind that I had Breast Cancer. I was just expecting them to say once again it was glandular tissue. How wrong was I?

Please get checked, always, no matter how many times and don't assume it's benign even if it was last time or the time before that or the ten times before that. This is the mistake I made.

The Only Way is Up

In the words of Yazz and the Plastic Population (yes it'll bring back memories for many of us 90s teenagers!) That is the mantra for this weekend. Sung many times whilst blasting out on 12" and LP, then CD and now of course via many other means not least YouTube https://youtu.be/hOMvs_1UFCk

Whilst I find writing this blog cathartic and it being a good way to keep everyone updated, it is also an opportunity to give people a true snapshot of what's it's really like to live with a cancer diagnosis and for this week the fall out from the treatment. Maybe it'll help others, as they'll know they're not alone in their feelings, experiences or needs.

Not only do we know that cancer will affect us differently as individuals but so will the drugs. Those to treat the cancer and those to try and counteract the effects aforementioned drugs....it's a minefield. So despite both having breast cancer and the same chemotherapy drugs, my Chemo Buddie Sally www.onelegoneboob.wordpress.com and I are suffering (and I have never used this word lightly or inappropriately but it is MOST apt now) the fall out now. Different parts of our bodies are being affected. She has a hideous sore throat. I don't. Despite me never wanting her to go through this EVER again I do feel it so helpful that she understands the score exactly. We can just 'be' with each other, whether it's good or bad. 

It's interesting, because despite both of us going through it before, you do forget. Not the sheer intensity of the experience, nor the feelings at the time of it being never-ending. But the specifics; for example; which day was the worst following chemo? The sheer amount of tablets to take day in day out and MUCH more. The memories had even faded as to how absolutely RUBBISH you end up feeling. I was swiftly reminded of this on Friday evening whilst sprawled on the bathroom floor not knowing whether to sit on the loo or stick my head down it. It all came flooding back. 

I know Sal won't mind me sharing this text I received from her yesterday "I'm absolutely shattered, still in PJs and cannot get off sofa. Throat is red raw hence the codeine. Achey bones. Brain fog. Had forgotten how awful this is"

Another legend who helped remind me yesterday of some specifics from 25 years ago was Ainsley. We have been friends for 37 years, since Primary School. Her and her 'Team' of Fiona, Rachel and Esther, quite simply I believe, kept me alive during my treatments in 1992 and 1993, whilst I was receiving them in Birmingham, where they were studying at University. 

I spent many days as an inpatient and there wasn't a day when one of them didn't come. Some days they came twice and Ainsley virtually never missed a day! She became an expert at sticking up the 10 000 cards that arrived (and moving them every weekend when they shut half the ward down!) not to mention fetching and disposing of grey bowls - sick ones and bed pans. Quite literally the nurses didn't have enough time to do this and there would have be MANY more spillages and accidents without #TeamVicki. They also became experts at programming the drips (well pushing numerous buttons until they stopped bleeping!). None of this is an exaggeration, all will and can confirm and those like Dad, who witnessed it too and also did the same. I'm convinced him and Mum couldn't have left me for a minute if it wasn't for #TeamVicki. Whereas it enabled them to go back to the Wirral at times to try and create some semblance of normality for my 15 year old brother in his GCSE years and to go to work and do ordinary things like sleep in their own beds and just buy and cook food. 

Ainsley was straight on the text yesterday morning reminding me (I know she won't mind me sharing) 

"Hey Vic, hang in there xxx Remember it being horrific a few days in but it does pass so hold onto that. Thinking of u lots xxx"

"Memories do fade, but you've always been stronger than u know. U kept yourself going & we just helped out - u can do this again. I always remember it being really hard on the 3rd day after any of ur chemo treatments so guess it's just part of the cycle. U were always much better the following day so today will hopefully be a bit easier. Hang in there, u can do this xxx"

I just remember the whole 6 months as a blur of constant vomiting, nausea and other symptoms. I wasn't alone then and I'm not now but the reminders do help. As a friend said yesterday when I was telling her about this exchange she said "We all need an Ainsley in our lives." We sure do!

One of the chemotherapy drugs Docetaxel is renowned for causing bone and joint pains. In order to try and stop your white blood cell count dropping too low post chemo you have 5 days of G-CSF injections to try and counteract this
http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html 
Thankfully another friend, Nicola, who is a nurse has been a star and coming Daily to do this. She has seen me from Day 1 quite chirpy having been to work, to being on the couch and today in bed. We will recognise this cycle next time I have no doubt. Having someone do these important tasks for you without fuss and doing so with good grace is absolutely invaluable. 

I haven't managed to get on top of the bone pain very well (stupidly trying to avoid the codeine for the first 2 days!) then being so sick I couldn't keep meds down. I won't make that mistake again! No medals for bravery in this situation!! 

Nor was the nausea and vomiting kept in check, as I didn't have what I needed at home. When a medic suggests going into hospital, as happened last year with my ankle, and it feels a relief, you know the time's right to do as you're told!

I was correct again and Hickman is proving my new best mate! Bloods from and fluids and drugs into him were easy. Had injections in both arms and oral drugs too. I'm thankful that we have the 24hr service where they'll throw everything they have at you to help get on top of things. Usual niggles with delays, paperwork, nothing gf in sight and pharmacy but my Sister in Law kept them in check and on track, tip top treatment yet again Chez Bexley. Shame it was 8 hours on a trolley but makes me appreciate my big comfy bed all the more :-) 

The fabulous meals, gifts, flowers, taxiing and sleep overs, ginger tea and various other supplies are still flooding in and we couldn't be more appreciative or grateful. It REALLY is making life easier and more manageable for all of us. 

After a shocking 48 hours I now feel better prepared to deal with the fall out from Cycle 2. It won't be easier, it may even be worse but forewarned is forearmed. I now have 3 different lots of anti sickness meds in my possession which I can space out through the day and night after I finish treatment next time. 

I have hit rock bottom and the only way from onwards from here is to begin the ascent. 

Sent from my iPhone

Firsts....

Monday 23rd January was the first day of my lectureship in Physical Education and Sports Pedagogy at Leeds Beckett University.

Tuesday 24th January was the first day of my chemotherapy treatment for aggressive locally advanced triple negative breast cancer.

Sooooo you could say not only a week of firsts but pretty big ones! 

On Monday it was lovely to just be 'normal' to go to work and sort out timetables, chat to colleagues and do a research interview. It kept me busy with less time to think about what was to come. After work I collected all three children, took the boys to the barbers and had a regular hectic Gilbert evening! 

I have no idea really how you prepare yourself for chemo anyway? What was lovely was, on my return, to find a package from someone, ironically who has recently become a good friend....through breast cancer. Not mine, hers. 

Having previously been through chemo myself and experienced how hard it was I wanted to help. She called them Care Packages...on chemo days....food to feed the family, comfort food and treats and distractions like magazines or DVDs. I now find myself on the receiving end of the self same deliveries and it really does mean so much....I can't put it into words. 

But the package that this particular friend left was full of things I just hadn't known or thought about. A spray bottle to wet my hair before the cold cap, gentle conditioner and a comb. All these things listed here in fact 😀 (Can't figure out how to add pics yet oops!)

Chemo day dawned with the all too familiar recent lack of sleep. But we were up and at it; picking up from diving, dropping at Joe at before-school care, Hope at school and Jack at a friend's...all by 8.30am Then my Bestie, Lorna, arrived, as she had done 25 years earlier, to support me through another hideous diagnosis and treatment for cancer.  I don't really think either of us can believe that this is really happening. 

She duly drove me to hospital, taken aback by the awful Leeds traffic! 

I can't explain how wonderful the staff are at St James' Hospital. Nothing is too much trouble, they never rush you and are always kind and caring. A REAL refreshing change in the current climate where staff and services are completely overstretched and literally there are no empty beds to be found! 

We experienced this when I was having urgent surgery on January 6th. On arrival at 7am on the ward we were told my consultant's list had been cancelled but she had fought to get two of us back on. Another consultant's list had been completely cancelled and patients were sent home one by one. Not because there was no theatre space or surgeons, just no beds. 

And I wasn't disappointed on Tuesday. Firstly I was lucky enough to see some friendly faces straight away. One of the Mum's from the Coeliac Group I help run is a nurse on Ward 80 and was the first welcoming face to greet us. She had amazingly arranged for me and my chemo buddy Sally to sit side by side. Sally's husband Pete kept us amused disappearing to cock up his shopping visits! Nappy sacks instead of wipes and salads and no forks!! 

Seriously though, it made the whole thing less scary. More calm, lovely nurses attended to us and offered tea and sandwiches (sadly not gluten free! Not had much success on that front so far!) 

Whoever said to me the Hickman Line I'd had inserted last week would become 'my new best friend' couldn't have been closer to the truth. No needles pour moi! Psychologically that made a difference. The Cold Cap was exactly that, freezing in fact, -5 degrees. And quite frankly almost unbearable at first. The strap was so tight, the 'brain freeze' agonising. It started a pounding headache and even stopped me talking for a good while!! It has been found to work for about 50% of users to retain about 50% of their hair. I have decided to see how much I lose before my next round as to whether I'll subject myself to that torture again! It really is the least of my worries in the whole scheme of things. 

I didn't feel anything with all the drugs going in and was glad to get the cap off (only when it had been disconnected a good while were they able to remove it, when the ice that had formed had melted!) I was glad of my new cotton beanie to help warm my head up afterwards! 

I was of course lulled into a false sense of security that I merely felt 'ropey' on the day after. I actually managed to go to a 3 hour meeting at work. Which was great, again, not thinking of cancer just research and future plans and see colleagues. 

Dealing last night and today with the familiar symptoms has been tough. Overwhelming nausea, diarrhoea and excruciating joint pains (especially in the joints that I've had problems with in recent years - hip, ankle and elbow) is not pleasant. The only hope and way to bear it is the hope then that it's doing it's job, destroying those bad cells that will see me lose my left breast, maybe all the lymph nodes under my left arm BUT I hope enable me to live to see my children grow up. Which right now, in my darker moments, is my biggest fear. This is the reality of cancer. 

Sent from my iPhone

Welcome to the reality of 2017

Well for once (I know you won't believe it ;-) I really am lost for words and don't quite know where to start.

These are the words that I have heard numerous times in recent days and weeks. That is since our world as we knew it began to fall apart just before Christmas. Words which I never thought we'd have to use as part of our everyday vocabulary have sadly once again become standard and will be for the foreseeable. Words such as Hickman line and neutrophils to Oncology and lymph nodes.

We were given a very unexpected Christmas present 5 days before the guy in the big red suit was due to put in an appearance. We were told in no uncertain terms that it was highly likely I have breast cancer and would need radical treatment to try and rid me of it. We then had an agonising 2 week wait until the New Year until they could give us 'the formal diagnosis'. Limbo land hell, sleepless nights and disbelief don't quite cut it.

We gradually told family and close friends and the children. I can't even bring myself to put into words at the moment how difficult that was. Sadly cancer isn't a stranger to our family, having lost my Godfather to secondary kidney cancer a few years ago and Mother in Law to the most agonising death from vulval cancer more recently, none of us, the children included, were ready (is one ever?) to enter this world of uncertainty again.

Since then we have gradually told more friends and family, colleagues, school mums and dads, teachers. On the whole we have received nothing but support, offers of help in so many different ways (we have accepted as many as possible with open arms and gratitude). Colleagues especially, couldn't be more accommodating, which really does make a HUGE difference!

So as I embark on a monumental week; firstly starting my role as a full-time lecturer in Physical Education and Sport Pedagogy at Leeds Beckett University and the following day my IV chemotherapy to try and rid myself of this dreadful disease, I have not got much head space for a great deal else as you may imagine!

Although, I will mention my friend Sally's blog; through another bizarre twist of fate, I will be seeing far more of her than either of us had planned. She has written a recent post about me here https://onelegoneboob.wordpress.com/

In posts over the coming weeks I'll upload the thoughts and experiences I've recorded over these last 5 bizarre weeks, as well no doubt, as the experiences as I face what is to come.