Before I explain that title I missed out loads of stuff from yesterday and I blame my chemo brain so back to yesterday Karen, Frankie and side effects for a quick catch up….
I was blessed that Karen was with me through chemo. We enjoyed two hours of chatting I told Karen about Frankie and her journey. For those of you who read my blog you will remember she lost her husband 8 years ago and used to attend the Sunrise cancer ward for his chemo treatment, where we both attend now. She was diagnosed herself in May 2015 with cancer, straight to stage 4 and not operable. Karen said “well she must have had some signs or symptoms”s. I realised I hadn’t asked her so when Frankie arrived we had a better chat and I’m sure she wouldn’t mind me sharing a small part of her story if it helps others.
Frankie was on holiday in Spain in April 2015 when she started getting the runs. She put this down to maybe a change in diet, the water or something she had eaten. Upon returning home she still had the runs and went to her doctors. Tests were done and within one month she was told that the cancer was in her bowel, liver and lungs. She was inoperable and was given only six months to live without chemo. She considered her options of whether or not to have chemo and looking into the eyes of her loved ones (two children with grandchildren too) how could she not give them hope and do whatever she could to stay with them for as long as possible. She has reacted badly to chemo and after cycle one she ended up in hospital. Although the dose of chemo has been reduced down for the next cycles she struggles with the treatment. I have my chemo session pumped into me over two hours, Frankie has hers over 5 hours to reduce the side effects. Frankie has a wish to reach her next birthday. Now when I first met Frankie I tried to guess how old she must be and I decided she must be early 50’s. I know I have put this photo up before of Frankie but it’s so that you can guess her age? Okay so I’ll tell you she a 69 and her dream is to reach 70. I’m sure you will agree she looks amazing.
During our long catch up on our journeys with cancer she like me struggles with how well she looks. We both can’t believe sometimes that when talking about what’s happening with our cancer that we are actually talking about us. She says ‘it’s like living in a bubble’ I agree. Apart from taking chemo we would feel okay and be living life with maybe pain killers but we would be okay and at least have energy. It feels like a dream sometimes that this shitty disease is eating away at us, like a slow version of Ebola turning our vital organs into mush, which we can’t survive from. They had a cure for Ebola in months!!! Why so long then does it take so long to find a cure that now effects one in every two of us all?
The side effects on cycle 4 have been so much easier to bear. I fell asleep yesterday and when I woke the sunlight hitting my eyes felt like they were burning. I hold onto my face as it’s not easy to explain but the pain is awful. After a few minutes the pain goes and I lie still. Then I started to cry, the tears flow and I can’t stop them but they don’t hurt, wow. I usually dread tears on chemo week. The chemo has decided to just attack my joints. My legs won’t work and I walk very slowly like an 80 year old, bent double and struggle to walk up steps. The reaction to all things metal is as strong as ever but I still have a sense of taste so that’s good. Frankie and I both suffer with first bite syndrome. This is when you first use your jaw to eat anything and the pain of chewing locks your jaw and it takes a while to get the jaw moving. Poor Steve has to help me dress because of the pain in my arm where the chemo was pumped in and I have no choice but to ask for things to be brought to me as walking is so slow and difficult. Steve says he actually likes getting stuff for me as it makes him feel useful.
So before we go to bed last night and after curfew time. Steve and I are in the kitchen and decide to start on our own ‘picking daisies’ playlist as we suggest you all do in 50 shades of chemo. It’s not easy as you don’t want any music that makes you sad or reminds you of anything or anyone else. We choose songs together and after a while Steve announces that we have created a playlist that lasts nearly two hours. I said that one song lasting 3 minutes would have surely done and he calls me a cheeky cow lol, only joking of course. Have you all made yours yet? Anyway I am just too tired and very cold for some reason and Steve helps me to bed. I go for fluffy bed socks, and P-jams, I’m rocking the 80 year old look again and I sleep with two duvets on me, I’m that cold. I slept for 5 hours which is so good for me this early in a chemo cycle, I don’t feel sick and I’m okay. The coffee and fag were okay this morning but the biscuit barrel is cold and starts the finger tingling off again.
Today we have nothing planned apart from cooking a Greek style roast Lamb and taking Molly out. Well I ‘m going to have to sit under a tree at her favourite park, Moo Moo Land and watch others exercise her.
Feeling Loved – this is for the generosity of you all via my Just Giving link. I really do appreciate it. I have tried to thank those of you privately as well as a general thank you via an update on Facebook. But I’m struggling to be able to thank Deborah who is a member of the BHS Family in Milton Keynes. I know that she left a comment on my blog once but with chemo brain and 27 pages of comments to go through I gave up. Deborah thank you if you are reading this and thank you to everyone else too as it does mean so much. It makes me feel very loved indeed.
Now my next piece about feeling loved is not about me but about you lot. Look at your loved ones and really do consider how much they do, not just for you but for others too, I am writing this as I am worried about some of you out there who are taking on too much. Working, looking after elderly relatives, children, shopping, cooking, washing, ironing, planning meals, planning family events, keeping up with the housework, the garden, school homework and the list is endless. I did this for years and years, always putting myself last and pushing my energy levels too far. I would occasionally explode as did no one else see that I was struggling sometimes? Moms always do as they have been there themselves. There would be a heated debate in our home and then things would soon just return to normal. So for all of you out there who this relates to, take it easy on yourself, stop and breathe, pick some daisies for you, so that you can then get back on that wheel and carry on. For those of you who know someone like this, help them, don’t take your loved ones for granted, and offer of help or to make them a drink, this will mean so much, remember one day, if you are unmarried yet and without kids, this rushing wreck who flies through each day and collapses late at night with a beer or a glass of wine as a reward will soon be you!
So off Steve, Mom and I went with Molly for a lovely relaxing pub lunch nearby with amazing views over nearby lakes and we walk towards them by a canal, what could possibly go wrong hey! The walk was fine, only short due to the tumour in my groin and the weakness in my legs but Molly loved it. Back to the beautiful pub for drinks and to order food. I have my plastic cup ready for my drink and chemo lunchtime tablets to take. The place was swarming with wasps, now as Steve has a beer they make a bee line for him (excuse the pun) and the thought of eating food whilst swiping away wasps was not exciting me at all, we can’t go inside to eat as we have Molly with us. Steve hates wasps and during the multiple changing of tables to avoid them he gets stung on his hand, drops his iPhone 6+ and smashes the screen! Now Steve is really not happy and so instead of spending £40-£50 on a lovely treat for lunch we ended up with a Waitrose sandwich each back at home in our garden armed with a fly swatter for any wasps that may be in the area! Life just isn’t perfect is it? But we will eventually look back and laugh and at least I saved about £40 🙂
Sunday tomorrow and so my prayer list for the wonderful MT Mrs Quin and everyone else out there who says a prayer for me. Can you include the wonderful Frankie and that her dream to reach her 70th birthday comes true. For Karen to cope with her chemo as she now has to have 12 cycles due to the dose being turned down. The wonderful stud muffin Pete who is still recovering. For baby Jacob who is doing really well at home. For everyone coping with this terrible disease and finally for all carers who rush through their day giving their all to their loved ones and others but who need to feel loved too. Thanks Rita, a long request but I know you are the woman for the job. and can cope with my demands 🙂 x