Author Archives: adrienne

About adrienne

I have a wealth of knowledge and experience within the health and social care network, I am passionate about getting the support right for people with dementia. On a very personal note I was diagnosed with breast cancer in Dec 2016, and I have been encouraged to blog about my experience in an open and honest way ... so here goes πŸ˜‰ p.s. chemo brain is scientifically proven, so if there are any mistakes, grammar, spelling or otherwise this is my excuse !!

Less rocky road …..Β 

It’s been a while since my last blog, probably because I didn’t feel like I had much to say. Writing my blogs leave me feeling a few different emotions, it helps me understand what I am feeling/going through but it also makes me feel vulnerable, which is odd as I’ve chosen to write it – someone mentioned my blog to me yesterday and how although she isn’t on the same journey/rocky road as me, it rings many bells for her, and how it helped her realise a few things – no bigger complement πŸ˜€ so although I feel vulnerable because I am sharing my deep feelings, it is helping people so that makes it all worthwhile. I also don’t know what to say when people say they’ve read it, so if you’ve told me you’ve enjoyed it and I don’t say much it’s only because I am not sure how to react πŸ€”

I have had a few emotional weeks, many ups and many more downs, but this road is definitely getting less rocky……….

I completed the amazing moving forward course, I can genuinely say meeting people who know exactly how I feel has been invaluable, they have made my realise I am not going mad, I am not depressed – I am experiencing all the emotions I should be feeling. They have even given me the confidence to ditch “the wig” and hat’s!!! Thank you ladies you rock 😘 . It’s still not me, but my hair is growing back nice and thick with waves – my wonderful hairdresser is looking after the colour, and we are excited about experimenting as it grows.

I’ve returned to work on a phased return, I thought I would be fine, as my fatigue and energy was improving – well silly me, that was because I wasn’t doing a lot or concentrating on much. Last week after one day I was so tired I struggled most of the week, I felt really low and frustrated. I felt like I was only half a person at work and then half a person at home – not a nice feeling at all. I returned to work again on Friday for our Christmas meal in Nottingham and the lovely words, kind wishes and huge hugs, made me realise that work is the right place to be, but also that the team do understand and this has lifted me back up to “yes I can do this” !! And I will do it in time – a dear friend said that I should remember it’s taken nearly a year to beat cancer, and will possible take as long to feel physically and emotional better- I tell my friends to be kind to themselves I need to take my own advice! I need to make that my new years resolution- be kind to me and worry less. 

Christmas is around the corner, again more mixed feelings – it’s supposed to be a  happy time of year and I feel guilty that I don’t feel as happy as is expected, but there is the shadow of this time last year! Oh yes and I cry at everything and anything now, so restraint is a new super power of mine πŸ˜‚

My next hospital appointment arrived today – my first routine mammogram. Not sure how I feel, it’s not till 26th January, think I’ve filed it away to the back of my mind as until writing this I had forgotten about it. I know when it comes round I will be nervous, but we will deal with that next year.

My friends and family continue to be an amazing support and I can’t thank them enough – love you all.

Road to recovery……

 I have started on my road to recovery…..however as my picture shows it’s not a nice straight road, it’s another twisty road with rocks along the way. Yes I am frustrated that I am not on the straight road, I also feel guilty that I am not up and running ie back to normal!

Back to normal ….. an expression we use quite a lot in life, (in fact as I type there’s an advert on tv talking about getting your kids back to normal )  but it is linked to strong feelings when you’ve gone through something like cancer – you are desperate to get back to normal as soon as possible. However on the moving forward course this week, we were faced with someone asking why do you want to get back to normal? We have been through a huge thing, do we really want to go back to the way we were? We are not the same people we were before, so why do we think that, that life would still be a good fit for us? A small question with a huge possibly life changing impact…….food for thought

During the course I was also made aware that the side effects from chemotherapy can last up to 2 years. This shocked me, as this means not only do I have to cope with the side effects from the tamoxifen but my aches and tingle plus fatigue could go on for 2 years. However at least now I am aware I will not be thinking it’s back πŸ˜€. And I’ll just need to develop some coping strategies.

The other ladies on the course are amazing, and supportive, they have given me the confidence to go without a hat or wig, I have a way to go, but I am doing it more. We have all had slightly different treatment/surgery because all treatment is designed accordingly to our cancer, as breast cancer is different for each of us. We are at different stages too, some have gone back to work, having this mix is great as there is someone who is feeling or has felt the same way as I am at the moment. We admitted we are living within a world of “worry” “fear” “anxiety” and “guilt” , we had a speaker who explained why we are living like this – often due to how we perceive how we should be, and also how others think we should be. She explained we need to start by looking after ourselves first – not about being selfish, but putting ourselves first. Also not to hide how we are, its ok if someone asks how we are, to reply with the truth (we tend to say we are fine – depending on who asks) people will not do a runner, and if they do, that’s their problem. Reassuring ourselves that we are ok and we love ourselves (this was difficult for some ladies, one due to the fact she has never loved herself, another due to not trusting her body now – especially her remaining breast, both i can relate to, to a certain extent). We need to be kinder to us, thinking about the psychological side affects of the treatment we have had, not just the physical ones. The emotions that the speaker raised were hard to deal with but those tears were needed to be shed, to help us move forward. 

Breast Institute appointmentΒ 

Friday saw me back at the breast institute, my appointment was with my surgeon/consultant (sometimes referred to as Dr Gorgeous – mainly by mum πŸ˜‰) unfortunately we had to wait an hour and half after my appointment time to see him.

He asked how my breasts have been and how I was getting on, clarifying that I’d finished chemo. I explained that my new breast was about a size smaller, but that I am unsure if I want to do anything about it now, feel like I’ve kind of been through enough lately πŸ˜‰. His response was to say “let’s have a look shall we” (so there I am boobs out again, hands on hips, as he studies his art work – think he is quite pleased with his handy work! More photos – he takes photos for a couple of reasons, 1. So he has a reference to how they are at this point, for tweaking purposes 2. For the album, this album is shown to women when choosing their surgery, so they can see how they may look. There is no way to identify they are mine )

He agrees that the new breast has settled down and needs filling, he explained that it can take a year for it to settle totally. I asked if I decided to wait, to have it tweaked would it be a problem to get it done, thankfully he said not at all, and it’s quite common for ladies to express that they’ve had enough and to wait. He briefly mentioned tattooing the nipple as will finish the job nicely, but we are going to wait. I have an appointment booked for March to agree for the tweaking to happen – 6 months and it’ll be spring πŸ˜€.

I asked the question, with the cancer I had and the treatment I received and still having what’s the likelihood of it returning – he didn’t really want to say, other than it’s quite low. He explained sometimes it comes back in the breast wall – which I hadn’t realised. But the tamoxifen should do it’s job and I need to have a glass half full, he was pretty positive but as I knew he wouldn’t put a figure on it, there’s no guarantee – with time, in his experience it gets easier and you think about it less. I will say I don’t think about it too much, not everyday, just when something doesn’t feel right, which I think is normal.

So I now have no more appointments for myself at a hospital until February when I have my yearly mammogram  (although I will be at the breast institute once a week in November attending the moving forward course) 

I am feeling better each day, my back will always feel numb and play me up, as I am sure where they took the lymph nodes will always feel funny. (I was writing a school note last week and my right boob was twitching away – very strange feeling) but it’s a small price to pay. 

I feel great today as completed a “memory walk” for the Alzheimer’s society this morning and I managed it well – although very tired now – but go me πŸ˜€

Last oncology appointment…..

Yesterday I was discharged from the oncology department – yippee yay! They have diverted my road back to my surgeon Mr Kristjen, who I see next week. It also hit me that it’s a year since I noticed a small change in my right breast – that I wasn’t sure I really could see. I return to work at the being of December a year since my diagnosis – a year out of my life, to hopefully give me 20-30 years. Oh how my life as changed πŸ˜€

I saw another registrar, again very nice, she asked how I had been getting on. She asked to examine me, (yep boobs had to come out again – been a while πŸ˜‚) she checked both breasts, my tummy and listened to me breathing. I did ask if I need to check new breast as it’s not breast tissue, she said it is best to do both. It was a nervous few minutes while she checked, but all is good. She congratulated me on getting through chemo and said how well I had done (I am not sure this praise is well placed as I think you just get on with it, you have no other real option, do you ? But I’ll take it as chemo is something you’d not wish on anyone even your worse enemy’s) I asked about secondary cancer, who do I contact with any concerns, she explain my breast care nurse if breast related, GP for other issues. I am trying hard to not think about secondary cancer, but does seem to pop up a lot on my FB feed and things I read. There’s also the slightly higher risk of ovarian cancer being on tamoxifen – but all I can do is be aware of symptoms and raise any concerns with GP. I am due a smear, so need to get appointment sorted (Need to make sure I get things checked as I should do, think being a busy mum you tend to put everyone else first and delay having regular checks, but this needs to change) and learn to live with the thought being at the back of my mind. 

I am starting to feel good, just my back that seems to hurt at the moment, possible because I am doing more, I think my fatigue is getting better, still get tired but I can do a bit more before it hits. I wonder if back sore as it’s my right side, so when cooking, tidying, driving etc I am using it more, and it’s a muscle short πŸ˜‰ something to just get used too I guess, it has unfortunately set off my migraines, but thankfully my tablets work. 

Next week I am back to the breast institute seeing Mr Kristjen and Diane my breast care nurse, he needs to see how his work of art is doing (my boobs) not sure if my new one needs a tweak, making a little bigger, it is about a size smaller, guess see what he thinks, to whether worth another operation, he did say last time I saw him we will look at tattooing the nipple, this may help me when looking at the new breast. Although I have/do struggle with my new breasts, I know I made the right decision for me, as i could be looking at an operation around now if I’d waited for reconstruction, rather than all at once.

It’s sepsis awareness month this month, I had never really thought about it before, but having been so poorly, but lucky to have been in the right place, I now know how serious it is, and why before starting chemo, you are told about your temperature and how they bluntly tell you not to take paracetamol as it can hide a temperature which can kill you. Again I was so lucky πŸ˜€

On another note I am going to attempt the Alzheimer’s Society memory walk on the 1st Oct – if you can sponsor me I would appreciate it ……

See separate blog for just giving page πŸ˜€

Thank you πŸ˜€

Rocky road getting smoother ??Β 

I am back πŸ˜‰ a friend said that I hadn’t blogged for a while, so taken the hint and here I am. I am struggling to know what to write, I am just improving a little each week. “Just” improving that’s not right because there’s no just I am improving and that’s amazing and fantastic – if you told me a few months ago that I would be baking and enjoying cooking again so soon, I am not sure I would have believed you. So the cooking is following recipes and they are pretty simple but yummy, I treated myself to Jamie Oliver’s 5 ingredients book, and it’s reignited my love of cooking – whilst actually saving money. This is because I shop for the recipes that we’ve decided to have the next week. I am not fit enough to do the weekly shop just yet, so click and collect has been a god send. Whilst having chemo it saved hubby a job, and meant we could make sure someone was about to unload and put away. A small thing but a huge help. My boy, has also started baking using the book, this means 2 nights this week he has not been on the Xbox but has made, orange short bread and last night frozen banoffee cheesecake (tonight’s treat) and he has done them independently ❀ from shopping to making πŸ˜€.

Today I have been back to the shop I bought my wig from, why am I telling you this? Well I wanted people to know that there could be an issue with your wig, that may not be made clear when buying. First thing is the manufacturer doesn’t guarantee the wig, how do I know this now? My wig has gone funny round the neck area, matted and knotty, so my love hate relationship continues. The ladies in the shop were clear today that there is no guarantee and that The manufacturer will not exchange it, as it’s classed as wear and tear, yet only had it 6 months. They said that this is a common issue due to friction and natural oils from the neck area, however this wasn’t explained when buying. Would I have bought a different wig if they had? Probably not. But I do think they should have said, as it makes the wig itchy, and looks bad, at least I would have been aware that it could happen. They have trimmed the wig and put a special leave in conditioner on it, it is nearly good as new…..why they didn’t offer the leave in conditioner when buying is another question, as they’ve suggested I use it each time I wear the wig. They also explained that it could be from wearing a scarf as this could have rubbed and caused the friction, now they say best to only wear cotton scarves, again why didn’t they tell me at the time of buying? So if you know anyone buying a wig, just be aware if they get one that is shoulder length or longer they may come across the same issue. I am hoping the conditioner works – i will let you know πŸ˜€

I went for my contact lenses check up this week, and he did a good check of my eyes because there is a small link between breast cancer and eye cancer, that was a nervous few minutes I can tell you, but thankfully all is good with the health of my eyes πŸ€“ again this is something I was unaware of.

A little of how I am doing………. I do have lots of aches and pains, mainly due to the operation, I wake up most mornings with back ache and neck ache, hoping it improves as I can fitter, it could be worse. At night sometimes get sharp pains in feet and hands but not every night which I am thankful for. I am not sleeping great but again could be worse. My main problem is fatigue oh boy it’s not fun, I’ve tried sleeping through it, working through, walking through it, nope nothing makes a difference other than sitting and resting. If I sleep I wake up tired, if I carry on doing stuff or walking I knock myself for the next day………it is improving a little each week though πŸ€— – tables and dancing soon enough 

I have a couple of busy weeks, with hospital appointments not just for me, but will keep you posted on my appointments πŸ˜€

Tomorrow’s another day, but just for today……

Today’s not a good day, feel low today – although physically wise getting stronger each week, mentally it’s a struggle, I hate days like this. I try to be positive, on a normal day I know I’ve been lucky…..but today  (maybe it’s the weather) I can only see the things I’ve lost. 

Every advert seems to be about hair whether it’s shampoo or hair dye, women with beautiful heads of hair, then I look in the mirror!! If it’s not hair envy it’s cleavage envy, I have one boob at least a size smaller than the other and it doesn’t really look like a boob well like my boob. Bras arent comfy due to this, which i dont think is helping my back. Trying to think about the future is an issue too, because I know there’s a chance it will return. I know I can’t not plan but it’s there, little things like buying a car to help my journey to work (more comfortable car for my back) but it will need paying for, which means working  (working not issue – looking forward to returning) but who’s to say how I’ll be in 6 months to a year? As I say it’s just there hanging over me, on a good day I can say and believe, but no one knows what the future holds, you can cross the road and get knocked over. But today isn’t a good day, today is a day all those nasty negative thoughts are there niggling at me. 

Nightime isn’t good, my hands and feet get sore and legs itchy, I have to lay there trying to ignore them and not rub them, as this only makes them 100 time worse. So not sleeping well, which may not be helping my mood. 

As I’ve said I hate days like this because I also have a battle with myself, because I should be positive I am lucky, just sometimes……….I have had a good week and a nice week planned this week, seeing some amazing friends, coffee meet ups, sleepovers, visitors and tea out next week, fabulous catch ups all round, I have wonderful support and know I wouldn’t be so strong without you all ❀ but today I will allow myself to feel sad, to feel my loss and to feel pain – but tomorrow is another day and tomorrow I have a coffee date. 

Thank you for reading – I feel better for having written this.

6 weeks after last chemo…

Wow can’t believe it’s 6 weeks since my last chemo, that’s gone quick! But then I have had 2 holidays, a hospital appointment and spoken to GP during those 6 weeks.

This week started with me feeling unsure and unsettled. This week my sick note ran out, so a decision needed to be made of when to return to work. I had sort of thought about looking at a phase return after 4 weeks, but I had started to feel unsure if this was realistic. My GP was ringing me Monday afternoon to discuss sick note and tamoxifen, so needed to think about it.

Monday morning I rang my breast care nurse to book myself on their course, moving forward after treatment in November, I left her a message – luckily she returned my call later, we talked for quite awhile, she explained that tamoxifen can take up to 2 months to get into your system, so any side affects my not show for another month (Oh great!!) And that with my fatigue I may struggle going back to work so soon, she felt a month was too soon, and that 2 months with phased return after was more realistic. I mentioned I had been struggling with my bowels, she didn’t think it was left from chemo or as a result from tamoxifen, she was unsure what could be causing it. It felt good to talk to someone who knew what I was going through even if not first hand (in some ways that’s better as she is non-judgemental, where as if you’ve experienced it yourself you kind of have an opinion, based on what worked or didn’t work for you etc) she made me rethink, so another 2 months it needs to be, especially with the driving as concentration can be an issue πŸ€” (maybe always be a bit of an issues πŸ˜‚) 

GP rang as agreed, and was great he said straight away a month not enough, he wants to sort issues out first ie bowels. He prescribed buscapan as he said that tamoxifen can be an irritant and this may have affected my IBS – yay if its not one thing its another πŸ˜‰ (the problem is that these things I have lived with – but now I can’t help but think is it cancer, has the chemo not worked, then I have to pull myself together. But I am going to have these thoughts because I am actually pretty normal!! ). I feel so much better that I don’t go back to work till end Oct – this gives me time to build my energy back up – I will say at this point, doesn’t mean I’ll be running 5k or eating organic veg food – NO cancer has taken a bit of my personality but it’s not changed me that much, I will still eat cake and drink alcohol  (when I can) – I will try to be fitter ie more walking, perhaps the gym too – please don’t judge me, I am still me and life too short not to enjoy cake πŸ˜‰

Monday also showed me how this has affected my boy πŸ˜”. Apart from worrying about what I eat, he just seems to worry about me quietly. I decided I needed to do something “normal” so whilst he was still asleep I thought I’d nip to Tesco fancied having a mooch (not been in Tesco for months – as not had energy to get round). My boy woke whilst I was out, promptly rang me to find out where I was – later I asked him why he rang, he said because he was worried, as he thought his sister had said I’d been sick, so thought I’d been taken back into hospital πŸ˜”. I’ve made a mental note to just let him know when I am going out – bless him. 

This week ends with so many positives, my hair is growing, visited my amazing hairdresser, she has dyed it, so no more grey!! And wow it felt fab to visit the hairdressers again, and have my hair washed by someone else… it’s so true it’s the little things that are important and that we take for granted. I went out for the day with my cheeky but lovely niece – who I don’t see enough of! I am happy…..yes happy I have been smiling more, feeling more settled and that I am doing well, I do have aches and pains but I just feel so much better. I received a thank you card this week too, that made me realise that there is always hope ….. 

On the mend, slowly but surely …..

I have returned from my second holiday – this one was so much more me πŸ˜‰ a lovely lodge in Dorset – so beach holiday. The weather was good too, this week away I realised the difference a couple of weeks can make. I still get tired but I managed to do so much more, and no afternoon granny naps πŸ˜‚. My brain is still on a 3 week cycle, I still seem to measure things by chemo, I guess as time goes by I’ll stop thinking this way, for example this week to me is “5 weeks since chemo”. Whilst away last time I remember waking up on the Thursday thinking I should be having chemo today, and strangely enough I actually missed going for it – why ? I guess my life has revolved around chemo for so many months and a 3 week cycle, now suddenly it doesn’t, suddenly I don’t have any structure, very strange feeling. Whilst on my holiday I managed to get back to paddling – ok not in a kayak, but on our sit on top, bit more stable. But a paddle and I loved it, was concerned how my back would be, as the reconstruction I had, removed a muscle and tissue from my back to build a new breast. But was ok, next few days I did feel it, but it was worth it, I am on the mend πŸ˜€. On our last day we visited a RSPB reserve and we had a long walk, I am not going to lie it was a bit too far, and I struggled towards the end, which made me a bit grumpy πŸ˜‰, however once completed I did feel good, proud of myself. My daughter’s fitbit said 7500 steps but my phone said 9500 steps (so going with my phone πŸ˜‚) with 5500 steps at a healthy pace. I am tired still 2 days later, my body wasn’t happy after I was actually sick that night, so it was too much, but felt normal. Whilst on the beach I rocked the head scarf, floppy hat and large sunglasses and factor 50, so not much of a tan, which is unusual for me, but at least looked glam πŸ˜‚

Tamoxifen – well I’ve been on it now for over a week, not sure if had any side effects as such, am I more irritable ?? Best ask the family πŸ˜‚ I am spotty, every morning I wake up to a new spot 😀. I am itchy not sure if this is the tamoxifen or not, I am also warm all the time, not hot flushes as such just feel warm, when others aren’t. I am more thirsty so drinking lots of water (still not able to drink much alcohol πŸ˜” a small Pimms or glass of wine – or I am ill.  Took a bottle of champagne with me, and returned with it, it’ll have to wait – hubby happy as means I drive πŸ˜‚) 

This holiday did me a world of good and sad to be home, I did things with the kids again, I am on the mend, slowly but definitely on the mend – in the post on my return was an invite to a course moving forward in November, breast cancer care run it, so on Monday I will book myself onto it, not too sure need it, but if it helps me a little then worth it, I need to start giving myself the best opportunity to move on positively as I am well aware of the statistics of anxiety/depression after treatment. 53% of people said they struggle with anxiety after treatment and 31% with depression. And I can relate to 80% of people who said they were concerned that the cancer will return – any ache or pain or change you think twice about – these are from a survey conducted by breast cancer care of 800 people who had a diagnosis. I hope the course will reassure me and give me the tools to move on without cancer over shadowing it πŸ˜€. 

7th yes 7th oncology appointmentΒ 

This is something for all my nearest and dearest to now look forward to πŸ€” I have just returned from (I can’t believe it is actually 7th) my 7th oncology appointment. I saw Sam again who is an “Advanced Pharmaceutical Practitioner” ?!? Anyway he is very nice and easy to talk to, he seems to also know his stuff, so not worried he isn’t an oncologist. He has given me my new daily tablets “tamoxifen” – I will be on these for at least 5 years, but because of my age he thinks it’ll be 10 years. My breast cancer was oestrogen receptor-positive which means it relied on the hormone oestrogen to grow, tamoxifen blocks oestrogen from reaching cancer cells, this means the cancer either grows more slowly or stops growing although. It is used, in my case to reduce the risk of breast cancer returning. There is a lovely long list of side effects πŸ˜‘ but mainly I will go through the menopause, there is a little good news if the hot flushes don’t calm down after a few weeks they maybe able to help with that! Sam mentioned forgetfulness and mood yeah to that, god help you all πŸ˜‚πŸ˜‚ 

Today I am feeling good, managed to shower and get ready to leave the house by 8.30am, doesn’t sound much but a huge improvement for me. I have been showering or bathing the night before to help with my breathlessness and fatigue in the morning. I also walked from the car park to the department and back, which is quite a distance. I am resting now. My funny tummy and my hip pain are due to the chemo, but need to keep an eye on it, if it doesn’t improve need it let them know. My taste buds are slowly improving as is my appetite.

I return to oncology department in 6 weeks to see how I am getting on with the tamoxifen and its side effects. 6 weeks is the 19th September, the day before my next sick note will run out, so the day before thinking about returning to work. Very mixed feelings about this, it’s a scary thought, I know it will be a phased return, and I can’t wait to see my work family but how will I manage…. (still 6 weeks is a while away, can get plenty of drinking practice in before then πŸ˜‚πŸ˜‚ ) 6 weeks is a long time to build my strength up, especially when I am improving each day, but it’s still a daunting thought after so long off….i am sure these are natural feelings and as it gets closer I’ll be ready to get into it.