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…..so 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 

6th oncologist appointmentΒ 

Just returned from my 6th oncology appointment…… yet another professional, he was very nice though.

I wasn’t kept waiting which was really good, we discussed what I had been through, they knew I had been in hospital but didn’t have notes so explained I was in Lincoln hospital. 

So we plan to go ahead with my “LAST” – in case you not aware but it’s my last chemo πŸ˜‰, on Thursday however if my cough cold gets worse it will need to be postponed for a week! As they don’t want to risk me being admitted again. I will have the same drug with self injections to encourage white blood cell production  (I asked about going back on FEC but he said I’d still need the injections, and seeing as I did not reacted to the drug, he felt best to stay with the docetaxel). He checked my cough and it’s clear which is good.

I go back in 4 weeks to talk about next steps – hormone tablets, which is reassuring as thought that was it last chemo and signed over to GP, so good to know I see them once more before the next stage. 

I think I am ok with chemo on Thursday, I know when I was in hospital I was pretty adamant I didn’t want any more chemo, but it’s only 1 more and then I’ve given myself the best possible advantage for it not to return, I know I’ve done all I can, to have an extra 20 yrs. 

HomeΒ 

Well I’ve been home a few days now, and it’s been a struggle, physically and emotionally, not sure I am out of the tunnel yet……

I came home on antibiotics which I have now finished, so a step in the right direction. However I have a cough, which is making my back – where had operation – hurt, as pulling it. My nose has been affected and feels odd, my taste buds are bad, all I can taste is medication, this is making eating and drinking difficult, how can you eat what you fancy when it just all tastes the same? My appetite dropped in hospital and I am trying hard to build it back up, as I know I will feel better if I could eat better. I am not sleeping well either which is not me, cough not helping…. I was given sleeping tablets to help in hospital and they have sent me home with them, but only seem to work for 3 hours πŸ˜” I’ve read leaflet and can take 2 so that’s my plan, one good night’s sleep! I cough too much I leak, we know this a common issue, I ask hubby to buy me some period pads always or something similar… he returns with “tena ladies” !!!! I am 45 yrs old not 80! They are huge ladies it’s like wearing a nappy, but as one wise lady said I can now cough with confidence πŸ˜‚πŸ˜‚, and watch Andy Murray with confidence too πŸ˜‰

Emotionally I am not in the best place, then I feel guilty as there are so many people worse then me, but I am human and I have been through a bit lately so need to allow myself to feel a little low – that’s what I would tell any friend, so need to take own advice πŸ˜‰. Only one more…… Only one more, but really not looking forward to it! I have read that people don’t always finish the course for many different reasons….a lady in the next bed to me, couldn’t have last one due to the side effects, she managed 10 yrs cancer free. I kind of hope the oncologist remembers that he offered for me to go back to the first drugs FEC – I know the red one horrid but compared to a week in hospital, I’ll take it. I guess need an open conversation around statistics and quality of life, I can’t let my family go through what they went through again, it was bad for them seeing me so ill. I will need to inject my tummy with drugs to encourage bone marrow to produce white cells if I have the same drug, not sure I could inject myself! It’s taking me a long time to work my way back up to being me, think that’s what I am finding hard, I can’t concentrate to read, it’s taken ages to write this. At least I have the tennis πŸ˜€

Next week has come round quick again – oncologist Tuesday and chemo Thursday – last one though then I get to look forward to my holidays.

Lulled ….Β 

I have just logged back on here after a week away and realised I had actually started a new blog – explaining that I felt my body had lulled me into false sense of all be great this time round, as I had been feeling good up to 2 days after my 5th chemo. I started to explain I felt my rocky road had taken a turn into a dark tunnel (tunnel not cave as I knew there would be light at the end, just how long it would take to show I wasn’t sure) as id started to feel poorly, at this point on Sunday I wasn’t concerned just felt tired and mood was low, it was difficult to concentrate which is why I didn’t get far in writing that blog. 

By Monday tea time I knew something wasn’t right, my temp hit 38.4, so rang the emergency line, she told me pack a bag and come and see us at Nottingham…..by the time Mark was home from work to take me I knew I couldn’t make it to Nottingham even though that was possibly the best place for me. I had a tight chest by now and my breathing wasn’t good. Lincoln A & E it had to be, I hoped I wasn’t wasting anyone’s time, my daughter told me off for even worrying about that, I booked in, they were brilliant no waiting went straight through.

Cannula hell……..I can’t remember how many tries but the consultant had to do it in the end, it bloody hurt each try they did. I had an ECG and chest X-ray. At this point my bloods were doing ok, so they felt I had a viral infection but thought best keep me in over night and redo bloods in the morning, and give me fluids. So at 9pm 4 hours after arriving at A & E , I was told there were no beds and I may need to stay in A&E over night on their trolly! (The lovely Dr did apologise and suggested we write to our MP – when we had arrived the department wasn’t too busy, but hubby and daughter had been out to get a drink and said it was mad out in reception, people were ringing different A&E departments to ask what their waiting times were – apparently Scunthorpe was only 3hrs so a few were off there!!) 

Luckily a bed came up at 10.30 and I was moved to the assessment ward, to try to sleep. Temperature still high, but no one seems concerned which is reassuring, so we decided Mark would go to work and mum would come and stay with me. By mid morning my temp peaked at 39.4, this sent everyone into a tiss, new bloods taken which isn’t a simple process I had a nurse and a doctor squeezing my arm to get enough to check for sepsis. They check your white blood cells to assess this, at this point they were low but not too low, they make the decision to admit me to the oncology ward, still thinking it’s an infection possibly a throat infection. I move up to the ward being sick, hot, shivery and then cold. My temperature is still going up and down, peaking at 39.1. I have odd dreams and very unsettled. On Wednesday the consultant decides to treat it as sepsis and change my antibiotics to a stronger one but which will target more of my body as they don’t know where the infection is, today’s bloods are not good (a week after chemo they expect your white cells to fall so where expecting my to have dipped, but not as low as this) more fluids given, and an injection in the tummy to encourage my bone marrow to create more white cells. Going to see how I respond to new antibiotics for a day, may need changing again. They move me onto an air bed as I am not moving much – no energy to do so. Thursday results white cells picking up, but temperature still up and down, but I am beginning to see that little light at the end of the tunnel ….. then when trying to give me my meds through my cannula it hurts and burns – this meant another cannula but where?? They send for an expert – I liked her, first prick and it’s in, inside elbow so not most comfortable place but hey ho ….. now please temperature start behaving. Friday I am feeling a lot better but still being a little sick, my bloods are doing really well, so told to go off ward escape for a while, I’ve managed a shower for past 2 days as well. Then I get the runs!!!! And I am whisked away like a dirty person and hidden in a side room…….. I have to do a sample. (The consultant did apologise later that it was the potassium tablet and another fizzy one which I can’t remember, that gave me the runs) but at least in side room had own toilet so not annoying anyone else on the ward.

Saturday feeling a lot better just not moving too far from the loo still, had to do a poo chart πŸ˜‰ I managed sleep as I asked for something light to help me, I am exhausted….Sunday the consultant said he wanted to send me home but could not as my potassium level was way too low, so given it this time via IV 16hrs worth. But at least I can go home with 5 days worth of antibiotics πŸ˜€ 

I can safely say I am black and blue from all my stabbings and do not wish to see another cannula in a hurry, but I was in the right place, the staff were all amazing, considering I am under Nottingham the oncologist were brilliant with me, it’s a sad ward, we had 2 deaths while I was there. A lady was given 2 months to live, another lady had been there 3 months and was finally going home, I am the lucky one I am home with a cough but home, tired and a little low but home. Now need to have an open conversation with oncologist about next treatment ……. Thank you everyone for you continued support and sorry I scared a few of you, I scared me too ❀❀

5th chemo – done (tick) only one more πŸ˜€

Well my 5th chemo has finished – yippee only 1 more to go …. feel like dancing πŸ˜‡

I have read that the 4/5th chemo can be the hardest ones, you can feel like giving up – I totally get that, although so close to the end, your body is tired. My body ached so much last time and the fatigue was hard, the thought of more chemo sessions even if only 2 left is hard mentally (and yet many people have so many more sessions – not sure how they do it, amazing, you rock). So I fought through those feelings and I won this one πŸ˜‰ as I only have 1 left now. The reason I made it through was due to a couple of factors ….some very special people in my life rooting for me, making me feel loved and needed, prayers and candles lit, virtual hugs given, and my lost family members showing me love and support ❀ I know some truly amazing people. The other reason were the simple words from my new oncologist “if you want to stop at any point, you can and we will look at other drugs/options” he gave me control back and the confidence to know I can say if not feeling right/panicky.

I was actually called in 15 minutes early, yes you read that right “early” wow, liking this early appointment 9.30am is the way forward πŸ˜‰. As agreed my chemo, started with “pre meds” these were a piriton type drug and extra steriods, these are to help if it was an allergic reaction last time, I then had a half hour saline flush to allow these to get into my system. They then started the docetaxel but slow for half an hour, and because I had no affects they put it back up to normal rate after this time – yet again the nurses were fab and nothing was an issue. So all went really well, plan will be the same next time – did I mention that will be my last one πŸ˜‰. 

I am feeling tired and achy already, not looking forward to the next few days but it’s a means to an end, and I am very lucky, I found out so early and have the best ever chance to many more years of causing havoc πŸ˜‰. I met a lady today having lunch on a bench, I sat with her while Mark collected the car (I was a little breathless). Her 24 year old son has leukaemia and is in hospital due to a chest infection, she has a lot of praise for the staff at the hospital, but she off loaded some niggles, she said it was fate that I sat next to her, how do you watch your child go through that, amazingly we laughed at our experiences and I listened, two stranger’s united due to cancer. I am a better person because of cancer, I have a better understanding of struggling with health issues and all that we go though because of them …. I know I will also be much better at my job when I am well/fit enough to return πŸ€—πŸ€”

5th Oncology AppointmentΒ 

I saw this and it made me giggle …… you have to laugh xx

Today saw me back at the hospital for my 5th oncology appointment. They seem to come round so quick, which is good means I am obviously not getting to bored inbetween appointments πŸ˜€
There was a 1 hour 15min delay, apparently my oncologist has left and I have a new one ……its a bit hot in the hospital, no surprise really, but okay as armed with my fan (A few jealous looks and remarks I need to get one of those) it was so hot I actually took me hat off – yes I went bald wow it was liberating and flipping cooler, walking back to the car later and having lunch out – I noted you get as many glances with a hat as you do bald! So there’s a thing, I my do bald more – when not with my boy, who still in public not comfortable with it (happy to tease me at home about being unable to grow hair though, so it’s a start) but when it’s hot it’s the way forward.

So my new oncologist seems okay, he listened to me which is a great start. He asked how it was going, explained much more tired this time round (common thing) more head aches but migraine tablets seem to be sorting these out. My body ached …. he asked if I’d had a fever – nope, did I ring emergency number – nope, he happy with that. We then discussed the last chemo, I told him my symptoms and he asked me if I’d had back ache, chest pains, a rash, if my tongue was swollen – no to all these. He gave me some options for this time round, we agreed that I would try having the anti sickness as tablet form (had IV last time and in younger ladies can make you panicky and want to leave) to have steriods and piriton just in case I have a reaction. To then try the docetaxel – also known as taxotere again, but if I want to stop then that’s okay, I could then try a different drug – however this is only licenced if you are allergic to the docetaxel. Another option is I can finish off my treatment with FEC these were my first three drugs. He also reassured us that not finishing the hour last time will be fine. 

I also noted that this blood test he asked for a check on bones ie calcium levels – I’ve googled and it says could detect bone cancer, I need to ask when I go if this is standard at this point – I am guessing, so if anyone can enlighten me I’d be pleased – i hope they are checking, as I’ve not had any other tests to see if any little buggers are lurking anywhere, no scans etc, 

Getting close to the finishing line now – which is a little scary, set free to the outside world well to the hands of my GP because then I start on my 5 -10 year journey with hormone tablets, not an easy ride for some either – the joys of being young and pre menopausal. Yearly mammograms, already booked for February, oh yes and my September appointment with Dr gorgeous Kristjen – to check his work of art πŸ˜‰(mmmmmmm who should I take to that appointment πŸ˜‰). With breast cancer, Diane who is my nurse is now mine for 5yrs (poor lady πŸ˜‚) so if I notice anything or have any worries I can just ring her, and she will see me, no need for a referral  (it’s a brilliant system).

Only one more after this Thursday πŸ˜€ …… 

LifeΒ 

As I sit in my mum’s garden enjoying this beautiful weather I wonder what to write, I’ve been quiet for a while, due to not feeling great…and that leads to a not so positive post πŸ˜‰

I have been feeling pretty good for a couple of days now (long may this last). Over the weekend I suffered with what I can only put down to fatigue…wow it hit me hard, I spent most of it in bed sleeping or resting, when I was up I could only manage an hour before needing to sleep again. But sleep can do me no harm as a wise friend says it will help with the healing and make me stronger for my next round, which is looming (only a week away again). Trying hard not to think about it at the moment – just enjoying feeling good and being able to do normalish things. 

Life is short – a saying we say often, but maybe me don’t always digest. Yes life is short but we still, go about life in a whirlwind to get the best job we can, or have that happy ever after, or the best car, up to date mobile phone, designer this and that, rushing here and there. Worrying about what people think etc etc. But life really is too short, and there are many people worse off than me, I have had to stop and take stock, and yes I have too much time on my hands to think, I am so lucky that after chemo I should be able to build my strength back up and get back to my life, loving it …. I have changed there is no doubt that a cancer diagnosis changes you, it makes you feel blessed for every day, and all the special people in your life, but it also makes you realise that sometimes you don’t have to make all the effort, if people want you in their life they will also make that effort, I have some amazing new friends who have kept making a huge effort to stay in touch even when I’ve not returned the effort as I’ve been too ill to – thank you you don’t know how much that’s helped me ❀. Other things I now appreciate are nature and wildlife, took for granted before but now have a love of just sitting watching and listening to our wildlife, no matter what is going on in the world nature keeps going, flowers bloom, birds sing and bees buzz. Unfortunately there is always someone or something worse that people are experiencing and today is no different, a friend I worked with and who has supported me has sadly died today and the fire in London, these things keep you grounded. So I will digest that life is short and I will.enjoy each day as it happens because I am so lucky πŸ€

A week after chemoΒ 

A week since chemo and I am starting to feel human again, apart from my mouth and my change in tastes ….. had a Korma last night and I actually enjoyed it, okay not that spicy but this is me after all πŸ˜‰. My mouth is sore, so thinking about what I want to eat is a difficult problem …. well okay on grand scale of world events and today’s political choices it’s very small, but I have been tasked with writing a shopping list of food I would like to eat, plus able to get ready and cook myself this weekend…..decision, decisions πŸ˜‚. Why am I fending for myself? Well finally the family are going to have a life this weekend, the boys are going camping at keswick festival Friday & Saturday night – so pleased they are going away – not because I need a break from them (honest) but because they need a break from me and my treatment (normal life). My daughter is going to London to the capital FM summer time ball, so out all of Saturday back early hours Sunday – it’s strange how happy I feel that they are going to get away even only for a short while and they will have fun, both events are music events too ….. music is an amazing tool to bring people together and make you feel every thing is going to alright, think the world has been shown this last week with the concert in Manchester, and all the other concerts and festivals still taking place.

Music helps me through the night, if unable to sleep and brain starts going into overdrive I will put my headphones on and listen to my Google playlist, I try to concentrate on the words of a song, that way shutting out any nasty thoughts that enter my head. Maybe I need to do this during my next chemo session to keep calm. 

I watched the Soap awards the other night, now whether you like/Enjoy soaps or not, you have to give them a huge amount of praise for the way they tackle real life difficult issues. I was pleased to see some story lines that’s are close to my heart won some great awards, my favourite episode this year was Emmerdale’s take on how the world looks for a person with Dementia….Ashley’s view, it was so well written and played out, I hope it helped people to have a little more understanding. Hollyoaks had tackled the issue of teenage cancer, don’t watch but it’s fab to see these difficult issues being highlighted, and to know that helplines are always given out at the end of each programme. Awareness of many different illness is a powerful thing. The more understanding we have the better we can support people going through whatever issue they have.

Right off to finish my shopping list πŸ˜‰ and then to vote – not wasting my vote, women fought for our right to vote!