Not all superheroes where capes…

I have a tea towel I got as a gift last time I got diagnosed and says “not all superheroes wear capes and has loads of pics of woman in different life roles. I’m planning on framing it (this last two years ) and it could not be more true. If you have read any blog of my mine you know how important and amazing my support unit/team is in helping me fight this disease. Now I’m all about equal opportunity and take help where ever and whomever it comes from. Its a learning curve, taking help but it makes everything about my life easier.

Over the last while I have been doing a bit of research for any state aid for later on in my journey. Ireland is amazing and I believe palliative and hospice care is amazing but I hope to fight this as long as I can in an ideal world I’ll see five years (always aim high ha), but that would see Séamus into first year of college and would be a dream. But it could be less we will see.

Now I’ll give you an idea of my week probably not the most accurate as I have zero memory. When I can I like to manage but the thing is I am a single parent to a teenager and I never want that day I have nothing in place to be the day Séamus has to care for me. Now don’t get me wrong he is a savage tea maker and always so helpful but the real struggle I’d like to protect him from where possible. So this last week for example……

Thursday 29 Oct – sat 31 out my day off chemo, I stayed in my sisters with Séamus. She made us a lovely dinners, and we hung out a bit, watched a movie got a takeaway. I was at my best and was up and about. 

Saturday – was Halloween I put a bucket of jellies out but nobody came and I was kinda glad of that. I watched a movie with seamus and my parents called over to check I was good and made me dinner I think (memory is shot) I’m pretty sure mam did loads of laundry too (savage)

Sunday was another ok day I did get a little tired and took it very easy. My good friend Emma who is a nurse and minds me once week. Made us dinner, and I even had a glass if wine. Watched tv and went to bed early.

Monday my friend Elaine came over and stayed. Again fed me, minded me, kept me company and cleaned the house and did laundry. Emma also helped me make sure my meds were in order. 

Tuesday I wasn’t feeling well woke up took my meds as I always do first thing every morning. Oh I got brought tea and toast to allow me to take the meds first thing (I get this every morning from who ever stayed or if nobody stayed parents call over first thing.) Tuesday night my brother Darragh stayed over. I wasn’t great. My mam made us a lovely dinner a small portion of roast chicken carrots and spuds. I watched a movie with Darragh and seamus. Sometimes I feel sick but if Séamus wants to hang out with me and take time off the precious Xbox I jump at the offer 🙂 afterward went to bed and straight to sleep. Only to be woken a good few times during the night to vomit.

Wednesday I woke and went straight back to sleep. But I felt a bit better late on so got to go and pick seamus up from school. (Possibly my favourite thing to do.) Although he doesn’t tell me anything about school so I’m not sure why I like it. I think it makes me feel like I’m still mothering u know. 

 I was supposed to stay in Siobháin’s last night to get an early lift to chemo this morning but I wasn’t feeling well so dad offered to drop me out this morning. Last night I was struggling to eat with a bad mouth infection. So I chilled out with seamus and my mam and tried to rest in advance of today. I did manage a chocolate milkshake from McDonald’s which was like the ultimate hangover cure for how I felt (not hungover now as I’ve not been drinking feck all, as in two glasses) mad how I feel I need to justify this. Some people drink quite a lot during treatment and they are entitled to if they are allowed by their dr.

Just to let you know I have a circle of 6 people (plus Séamus) who care for me. Technically I’m only allowed one person care for me with Covid restrictions but with pregnant people, people working etc I need to spread the load. But we keep our own social bubble and avoid all risk of Covid where possible as I more than anyone would hate to miss life lengthening cancer treatment due another illness.  I hope I’m not moaning as I am so grateful to those who physically, mentally, financial and every other way help me I’m just conscious of how other perhaps older people cope. 

So that is a rough week but you see I get highs and lows, bouncing with energy to passed out tired. So the wonderful people who stay with me make me able to continue to mind seamus and run a relatively ok house (often a mess, my wonderful cleaner walks out the door, then the dog, cat and teenager ruin her hard work). But as far as I can tell there is no help available otherwise. I am a very lucky person surrounded by people mad to help I just hope nobody suffers in silence and asks for help when it’s needed. Where there is no help people need to fill the gap privately. I have the worlds best cleaner who is also a deer family friend. She comes two hours twice a week. I had got her just before my diagnosis as I wasn’t coping. I can clean and cook but if I do those chores I have no energy left in the tank to be a mam, and to hang out with my favourite people and live a good quality of life. My cleaner is really affordable and I just recently went to two hours for two days to ensure a higher level of cleanliness during chemo, but I’m so lucky to have the go fund me to assist me fund things like this. Otherwise they just couldn’t happen out of my one income dramatically down – due to cancer since jan 19. I just hope others are also able to get the help. I’ve heard countries like Australia have home help for the likes of depression for example when someone isn’t functioning, they get help to assist them in running the house, minding the kinds etc… enabling the family to remain looked after and together at home. Seems very forward thinking. Rather than looking to put the same person through inpatient care and finding the kids potentially in care. (I’m not saying this is the norm) merely illustrating when help is there earlier people do better longer and take less resources from hospitals etc..but alas nothing like this appears available. I was only looking for the new year as my sister Siobháin is due my niece or nephew in February and my best friend Elaine is due in early March (a similar distance between their babies due date and their wedding) and as a much as they will help life needs to go on alongside cancer. The fucker of a disease takes too much already. Anyway I’ll worry about it again and wait and see what the future holds no matter how long it is. 

I’m currently sitting there getting chemo and I put it out to the universe and social media I needed candles and prayers and you know it WORKED! So massive thanks for all the candles and well wishes. Spreading the love right back at you. Last week during chemo my bleeding nose freaked me out this week. I’m not blowing my nose and sitting still hoping no blood appears. 

The last few weeks I’ve been working away trying to promote my story with the hope it would increase the uptake of the hpv vaccine and smears. The numbers are really low. I know hospitals are to be avoided with Covid  but smears are usually done firstly with your gp who aren’t letting anyone in with anything Covid related. I have attended several hospital appointments over the last 3 months and feel very safe.  I know things are not ideal but the main thing to help increase the likely hold of surviving cancer is time. Early diagnoses means less invasive treatment, more options and hopefully a full life.  So please please don’t think “will I ask the doctor about…..  just ask. If your gp is not helpful ask to see another one in the practice until you are (I say this but realise some people are without a gp.. ridiculous). I am with my gp practice since 1987, I think they opened in 1986. 

I’m sorry it’s taken so long to finish this blog. Today is Sunday and I started this on Thursday. I had a lovely weekend got in two walks with the dogs and my dad so felt like a million dollars. We even went into the gold club as it’s closed I feel so bold doing that 🙂 but it’s flat. 

I’ve been tired quite a bit a bit of sickness so I’m sorry for not being online as much as I would like but I always feel life with Séamus will trump all other commitments. We had a row Thursday over maths homework (the joys) I feel him pushing boundaries but am very happy with the response from school. But I went to chemo and Séamus texted my sister and asked if he could bake me a cake to cheer me up after chemo. So he’s not all bad. 

Lastly I wanted to thank everyone for all their continued support. I sometimes feel like I a missing out on some thanks and would hate anyone thinks me ungrateful. But from nutrition, essential oils, journals, care packages, food, care, toiletries and so much continues emotional and physical support THANK YOU. I would also kindly ask my families friends and support network to keep checking in even when they are not responsive. It’s a lot dealing with life and a terminal cancer family member. They need you. And all I will say is karma is resulting in kindness from the most surprising corners of my life even the school bus. Much love everyone and keep up those runs A&S Fitness.

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