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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. 

Baby steps

I have been quiet for a while, so much so some kind friends asked if I was alright πŸ˜€. Such a thoughtful act made me feel good, and reminded me that lots of people care. 

The reason for being quiet is that the last few weeks have been hard, after the 6th chemo it’s taken a while to pick myself back up, I’ve had a silly cough that some of you have experienced when I’ve tried to talk to you πŸ˜‚ I know I should listen more and speak less! This cough has got me down as it made me a little breathless too,mix that with fatigue and it makes me not a happy person to be around. However this didn’t stop me from being whisked away on holiday – owww somewhere nice and warm with blue sky and blue sea, I hear you say. Nope camping in a tent in North Norfolk…..mmmmmm. I have to admit I was very unsure about sleeping in a tent for 8 nights. And with my energy levels so low, but my family needed this holiday too. Sleeping wasn’t a problem due to the new camp bed with air mattress, in fact I think I’ll miss it now i am home. It wasn’t the same kind of holiday as before cancer, as I didn’t have the energy to do the walks, bike rides or eating out. But the kids and hubby did, which is what they needed and I rested when I needed. I managed to actually read a book, which is more than a baby step, as my concentration has been shockingly bad with my chemo brain πŸ˜‚. We went crabbing and had fish and chips at the beach, which was fab, it’s the little things that mean so much. The small children dancing to the band on site (Not my children), the kids messing about in the pool, just puts a smile on your face. Oh yes and we went bird watching briefly, something I have enjoyed doing at home whilst resting, so stopped at a visitor centre near salthouse 😁

I did walk and do a little more each day, it’s slow and fatigue kicks in quickly, not too sure my boy gets it, he just gets frustrated with me πŸ˜” mind you he didn’t have his Xbox or Wi-Fi whilst we were away so that maybe didn’t help πŸ˜‚….. I have now started to eat more although my tastes seem to have changed, rather eat savoury than sweet, sure it’ll not last though. I managed a Pimms or 2 (Not one after the other – on different days) and a glass of wine… it seems that my baby steps are all going in the right direction….. 

Ps my cough has nearly gone, fresh air best medicine! My hair is growing, grey and straight, although uneven so think it will need shaving again – who knows what it’ll end up like πŸ€” 

Day 6 after last chemo ….

Today is classed as day 6 after chemo as they count the day you have chemo as day 1. I’ve made it, made it past Monday and I am still at home……. this was a huge emotional rock to get past, as Monday was the day I went down hill last time and ended up in hospital for a week. But this time I’ve got past it πŸ˜€

That’s not to say it’s been plain sailing or driving (rocky road πŸ˜‰) . Friday was a reasonably good day, Saturday I started to feel very tired again, this then saw the return of my cough  (although no tena ladies in sight – band them πŸ˜‚) . Saturday over night was rough, even with all my anti sickness tablets I was sick, up most of the night. Sunday brought aching joints, not as bad as last time but not being able to get comfy in bed or sat up, bath was the place to be. My mouth is bad this time round I have sores and everything tastes awful, which makes it hard to eat and drink. My ears ache again too, need to keep eye on that as this was a sign I was going down hill last time. I decided Sunday night to take sleeping tablets and I believe that was the best decision I’ve made in a while, as I slept well for 6 hours, and I felt a lot better …… not brill but a lot better. 

Monday arrived and I can safely say it was a scary day for me, kept taking my temperature, tried hard to relax, avoided people, felt a bit like a mind game, slowest day ever. The day started with another rock to climb, Mark had to inject me 😯, these are the injections they give you to encourage your bone marrow to produce white and red blood cells and platelets. I need to have them for 5 days, I am not sure who was more terrified πŸ˜‚ after I wonder if he enjoyed it too much ……… I wasn’t able to sleep during the day, maybe because of the good night’s sleep I had, it was hot so I spent the day on the bed with fan on, but no tennis to watch. I am weak from being sick and struggling to eat and drink but it’s Tuesday and I feel sooooo much better, the only way is up now……. today is the start of a new me, new life and new outlook πŸ€—

“Last Chemo”

Cancer has gone ……. I have also now given it my best shot of it not returning!! Go me I’ve done it, last chemo given – relatively easy too, just cannula in finger which wasn’t pleasant actually let’s be honest it bloody hurt, however it’s the last one – so was ok. I could not have done this alone, all my friends that have suck by me, I can’t thank you enough for your on going support, all showing it in your own unique ways and making my smile and cry – sometimes at the same time – I ❀ you all xx My family what can I say? You’ve grown over this time too, and you’ve made me so happy to be back in touch, and I can’t wait to meet up with you all. To family near, they say that when some one you love gets cancer, you get it too, I have felt that for you too, and you are all brave too – I am so lucky to have you all, and sorry I scared you the other week….. love you all.

Now to the next hump in my rocky road, I am fully aware that life after cancer treatment can be very hard. I need time to mourn many different things, from lost friendships to my different body (losing the boobs that fed my babies) losing who I was, and learning to love the new me – this maybe hard and take awhile. I need to build my fitness back up both mentally and physically, and this will take time and patience – apparently I am not very patient!! 

“I had to find a new normal rather than trying to get my own life back just as it was” quote from Macmillan life after cancer treatment leaflet.

I think the hard part is they don’t offer scans or anything ….. So I will always wonder and analyse every ache and pain, I guess I will need to trust my instincts as I did before and that was a good thing or this rocky road could have be a lot longer and rockier. It’s not over as I will be on hormone tablets for 5-10yrs and I know that the side effects maybe hard, especially the fact it will bring on the menopause and more mood swings (I apologise now while I can πŸ˜‚)

I have slept most of the afternoon since coming home, but feel okay at the moment, I have my tummy injections to start Monday to encourage bone marrow to do it’s job well, fingers crossed that helps if I get an infection. I also have 3 weeks supply of antibiotics for any chest infections, due to infection doing it’s rounds (had these since starting chemo) fingers and toes crossed I sail through this one please xx