Once I was given my first diagnosis, I kept saying “I have cancer” over and over in my head, looking in the mirror putting my makeup on “I have cancer”, getting dressed “I have cancer”, maybe this way it will sink in. I can honestly say that I never thought that’s it I am going to die, yes I got scared but never believed I would die, maybe because I have too much to live for, too much I want to see and still do. But saying “I have cancer” out loud is one of the hardest things I have ever had to do. My daughter had attended a talk by a very brave young lady at her school, who is battling cancer herself, she said during her talk that its good to say it out loud, this in turn made my daughter encourage me to say the words.

Cancer changed everything, it changed my relationship with friends and family. It’s changed how I look and feel about me. It’s changed how I view the world, I actually saw a peacock yesterday dropping my children off at school, I paused and took the sight of this beautiful bird in, I have slowed down. It’s changed my work role:

All other changes happened slowly and to different degrees, but my work changed very early on, and hit me very hard. I love my job, I am someone that wants to help people, within my job I get to do this at one of the most difficult points in their lives, I can make a small difference for them – but could I do this while I needed support myself? I wanted to believe to could, I was given the options, do less hours, change my role or carryon. I decided to change my role, this was extremely hard to do, and those who were around me know how upset I was (this was the first time I cried since the diagnosis – although not many tears have been shed, no I will not turn into a blubbering wreck for cancer), cancer had now taken my ability to do my job well, this has had a knock on affect and still does have, as I am on long term sick. (Long term sick is a statement that doesn’t sit well with me, my job has always be a big part of me, its who I am – I may joke about being a lady of leisure, but I don’t have so much purpose to my life now) In hindsight, after attending a memory café as a support worker, and having 3 people talk about losing loved ones to cancer (they didn’t know my situation – and this was a few weeks later) it was the best decision to make, not just for me but for the people I support with dementia and their carers, they deserve the best support possible and at the time that wasn’t me, that was from my brilliant colleagues. On the flip side of this came the guilt, guilt that my colleagues were picking up the extra work, I know that under the circumstances they didn’t mind, but I did (who said our thoughts are rational?). So actually being able to say I will be off for 6 months due to chemotherapy helped me, because this enabled work to replace me, and ease the pressure on my colleagues, (who said your feelings can’t contradict themselves?)

I don’t have cancer now, its been removed, I have to tell myself this everyday now and pinch myself regularly “I am lucky”

Yesterday my arm started to hurt, I put it down to over doing it during the last couple of days, it’s a strange feeling, a sharp pain when I extend my arm. It gradually got worse as the day went on, it’s not unbearable though, more annoying.
I decided to Google it (I can feel your breath intake Alison 😉) the big debate – should you Google things….i did only read forums so real life experience, it would seem I have vein damage from the drugs, and there was a lot of talk of different ways to have your treatment rather than through a cannula, apparently you can have a portocath which is in your chest, not sure if this is the same as some people have in their upper arm. They can give you your chemo through this as well as take blood, reducing injections. This seems a little extreme for me as only – yes only have 4 more sessions 😀 left. The advice was to make sure you drink plenty before chemo and warming your veins, which rings true, as during my first session they wrapped a large warm bean bag round my arm which covered the area of the arm which is now sore, during last session bean bag only on top of arm. Apparently warming your arm opens up.your veins. I am concerned it may get worse after each session, as some people on the forum seemed to be really suffering. Time will tell, however the portocath is put in with a local anaesthetic so be good to avoid this.

Unfortunately the other side of googling I read on, reading more posts after I had my answer to my discomfort…..it would seem that my last three sessions may have more side effects which my affect my mouth more and taste of foods 😔 plus sickness can be worse, maybe forewarned is forearmed, so stronger sickness tablets will be the way forward, as I have been sick a couple of times this time round as well. They also talk about the steroids that we have to take, about the steroid high and then the low, another new experience to come then.

Good afternoon, yesterday was yet another reasonably good day. I managed to do a little bit of weeding  (Well 3 weeds out) before Lucy dog and I decided that supervising was a better option 😉 so we sat in the sun (Did risk assessment on this decided as foundation has SPF 15 and the sun not too strong – with the warmth on my skin feeling great the positive effect out weighed any risk).😎

Before you start chemotherapy you attend an new patient interview, during this interview they tell you lots of does and do nots, one is sitting in the sun as you are more at risk of burning, this is also for months after you’ve finished….but I like the sun, so this will be hard, however sunscreen and large floppy sun hats are the way forward. Audrey Hepburn classy look for summer.

The biggest risk is infection due to the drugs also damaging good cells, so I am on steroids for 3 days after a course of chemo, I also have to take my temperature everyday, if it goes above 38c then they ask you to go into hospital to have tests and IV anti biotics within the hour! Scary stuff as infections can be life threatening and they are very clear on this, shocked Mark.  Funnily enough having lost my hair my temperature has dropped from an 36.5c average to 35.5c so guess my hair was keeping me warm! Who knew…😂 I am also on anti biotics indefinitely due to there being a pneumonia bug around (nurse said it’s a nasty strain so all chemo patients will be on anti biotics for the foreseeable future) 

With the type of chemo I am having (there are about 100 different types/combinations I believe) I have it though a cannula, I am having 3 different drugs for 3 of the sessions. The first drug is bright red (yes my wee is red) the chemo nurse sits with you whilst this is going through – a machine does the flow it’s not manual. She needs to sit with you as if it leaks out of the cannula it can damage your blood vessels. Next you are given steroids, and a saline flush. The next drug, can make your nose and sinus tingle amd sore. Another saline flush and then the last drug, which you need to drink iced water and suck ice cubes – this is to help reduce mouth ulcers and getting a sore mouth, due the mouth being a vulnerable area – so far my mouth this time round has been good, manage eat other foods than frozen cherries and yoghurt. A final flush and then you are free to leave.

I am given extra strong anti sickness tablets for 4 days – oncologist has said that I can have stronger ones, which I will take him up one next time. 

Today started out not feeling so good, but I think having the family around as it’s the weekend and also the sun is out, has helped oh yes and a visit from a friend always helps too 😉

I had my second round of chemo yesterday, whilst there I commented to the nurse how scary it is that they are so busy…..her wise words made me smile and proud of the research and hard work of the NHS …..she said it’s not scary, we are busy because we can now treat people at one time we couldn’t, we are diagnosing early so able to treat better, and we are growing older but able to cure more. 

So how have I been, actually having chemo is an uncomfortable feeling, lucky I am only there 1hr 30mins, some people there all day, but not painful and the nurses do check that you are okay all the time….. I was sick during last night, not as bad as last time which is great. I had heavy legs again which is a strange sensation to have. Today I have been very tired and fighting nausea. My mood has been quite good though, which has helped. I do think that fact I’ve now lost my hair has helped as not worrying about it. (It was very painful until I had it shaved).

Still feel guilty about things but learning to be kind to me, I can only do so much, I do have chemo brain so if I forget what you say to me, it’s not because I’ve not listened. I spent hours trying to remember what my auntie offered to lens me, when I saw her on Tuesday 😀 it came back to me eventually!! (Frustrating) 

A friend suggested I start a blog after I posted this on my Facebook page, so here goes 

I’ve been a bit quiet since chemo started, not wanting to post negative things, but my mum said something to me! She thinks people will still want to know how I am. So here goes …. chemo started 3 weeks ago, I’ve been sick and soooooo very tired, which is hard to deal with, I now have hardly any hair – to lose the thing i used to hate as a teenager but have now learnt to love has been so hard (I guess on a daily basis people would say they love my hair – maybe due to working with the age group I do), I have to thank Kelly Linder my amazing empathic hairdresser for shaving it without crying 😀, you have been great throughout this – I can’t thank you enough xx 
Has it been the hardest part so far? No looking in the mirror and not being me is the hardest part that includes hair or lack of it, and not feeling positive (usually glass is half full) – this maybe my hormones which are all over the place – chemo I think. 

I have had so many amazing messages telling me I am brave and how proud you all are of me, but I don’t feel brave as this week begins, due to 2nd dose of chemo on Thursday. I feel guilty for not feeling positive and for feeling low, but …… I am learning that I am allowed to feel the way I do! Guilt is the biggest emotion I feel.
Thank you to my wonderful family and some very special friends who have and still support me daily …. and for saying I look great with No hair lol 😂 I love you (fingers crossed hair grows back blonde and straight – as blondes have more fun, the world will then have to watch out 😉) ps it’s taken a lot for me to write this, and it’s not for sympathy, but it’s helped me realise I am human and yes I am allowed to be pissed off with my situation and question why me – so thank you for reading xx