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 …..