Jack of All Trades, Mother of Two

 Apparently I am now in the “Maintenance” phase of treatment. It means I am NED (no evidence of disease) and treatment aims to keep me that way. You may think Oh that’s great but let me tell you the honest truth. IT STINKS! Currently I’m on an enforced 2 week break from Ribociclib because it is messing with my eyes again. This drug stops 2 proteins that potentially can make cancer cells grow. It’s so toxic you can only take it for 3 weeks at a time and it has the potential to mess with your heart and liver. I started in June on 600mg but in August had to drop to 400mg because it was causing vision trails. Now something else has cropped up. On Thursday I suddenly lost binocular vision. This mean my eyes were focused separately but not together. It only lasted for a minute but was quite scary. It’s the second time it’s happened so I knew I needed to investigate so off I trotted to the hospital. In A&E I flashed my cancer red card which is supposed to get me seen quicker. Triage s...

 I was inspired to write this by something that the Princess of Wales said recently about her own cancer journey as it really resonated with me. Basically she was talking about the hardest time being after you’ve finished active treatment. I read it and thought God, she is so right! So you finish your last active treatment (for me that was radiotherapy) and you ring the bell. I’m sure some people think you ride off into the sunset on a bloody unicorn after that! I had a friend stop me in the street this week. I hadn’t seen her for a bit and the first thing she said to me was “are you back to normal now?” I physically restrained myself from saying no I’m not back to fucking normal and just smiled and said that I was ok. It struck me after this that many people probably don’t realise what actually does happen next so I want to talk a bit about what’s been going on with me lately. I was given about 3 weeks off after finishing radiotherapy and then it was back to the oncologist. I had ...

So I haven’t posted for a bit as basically all my energy has gone into surviving chemo. Anyway, I had my last chemo 6 days ago and although I feel like absolute crap, it’s good to know that it is finished and I will feel better very soon! I didn’t see any point in going through every infusion in detail so I’ve tried to think of things that I would have thought were useful to know, so here goes - Chemo is fucking hard! But you will get through it especially if you take it just one day at a time. Cold capping works for some people but there’s no guarantee. I’ve kept maybe 40-50% of my hair but the lady next to me at chemo lost the lot. However it’s worth remembering that cold capping protects hair follicles so you will hopefully get regrowth quicker. Keep a diary of your side effects. They tend to occur on the same days so it’s good to know what to expect! HYDRATE! This is really important both before and after each infusion. Beforehand it helps your veins stand out which is particularly...

 So it’s over a week since my first chemo infusion and I seem to be dealing with most of the weird side effects ok now although it’s scary to think that I have five more infusions to go and the effects are cumulative so I can expect the side effects to get worse! It’s a very long process to go through! Firstly I had a heating pad on the back of my hand for about 20 minutes to try and make my veins more visible. I have tiny veins so they are always an issue! I then had the cannula inserted and a saline drip started while they sorted out my cold cap. This is supposed to help me keep at least some of my hair and works by freezing the hair follicles. Imagine the worse brain freeze that you’ve ever had from eating ice cream too fast and then multiply that by 100. That’s what the first 10 minutes felt like to me. I considered giving up but thankfully my head went numb so it became bearable. The cold cap takes 30 minutes to get cold enough then stays on through the whole infusion and for ...

 It’s been quite a hard seven days, to be honest. I had my first medical oncologist appointment in which they set out the treatment plan for me. This involves them bombarding you with information and getting you to sign consent forms for various things. The good news was that chemo is shorter than expected with only six infusions. The thing that is causing me a lot of stress is the hormone therapy that will follow active treatment. They want me to take an aromase inhibitor for 10 years plus infusions of a bisophosphate every six months for three years. This appears to be the NHS standard care for post menopausal women.  I was sent home with additional info to read about all this when I got home and that’s when I started to see problems. All aromas inhibitors contain lactose. I am strongly lactose intolerant. The inhibitors also thin your bones. I already have arthritis in my back and both knees. The 3 years of bisophosphate infusions are supposed to counteract the bone thinnin...

 So here we are again. I’m now 6 days post a full mastectomy and I’m actually feeling ok. Physically I have very little pain. Whether this is due to nerves being cut, I don’t know. I also have a wound vac across my chest at the moment which may be protecting me from soreness. That’s due to be removed tomorrow and replaced with a normal dressing so I’ll find out then if pain levels rise. This nifty little gadget is called a Pico Vac and is supposed to make healing much quicker! So I lose that tomorrow but I also have a surgical drain to get rid of excess fluid. That stays in until the fluid draining is less than 30ml for 2 days. Yesterday it was 70ml so I’m heading in the right direction. The actual operation day was fairly smooth. I’d pleaded with my consultant and he’d put me first on the list this time so no hanging around this time. The only hiccup was when the anaesthetist had got the cannula in my hand to administer the meds (I have very small veins so that’s a bit of an achie...

 So about a month ago I went back to see my consultant for a post op check up and to get my pathology results. I went in there feeling pretty good and expecting just to talk about radiotherapy. Ha! I couldn’t have been more wrong!! Firstly the pathology results. I knew there were 3 small tumours but pathology found an extra one making four in total. They also found 3 clusters of DCIS which is a type of non invasive cancer that has the potential to become invasive. Also surgery did not have clear margins on one side. All the lymph nodes were removed, I knew the 2 biopsied had cancer cells but pathology found 7 positive nodes out of the 22 removed. None of this was good news! The amount of tumours and the unclear margin made a mastectomy a necessity. The number of positive lymph nodes meant the chances that this had spread elsewhere had increased. My consultant said I would need a bone scan and ct scan before progressing. He tried to reassure me that the surgery had got all the visib...

 People are funny. When I first published the blog posts about having breast cancer, I got lots of messages and comments. It was quite uplifting as some were from people that I don’t really talk to as well as from people that I expected to respond. The funny thing is that after that, the messages dried up. Now cancer doesn’t go away overnight and, to be honest, I’ve had a setback that means I’ll be in some sort of treatment until next Spring. I’ve come to the conclusion though that a lot of those initial messages were just lip service. People felt oh I’ve commented and said let me know if you need anything so I’ve done my bit now I’ll just get on with my life. I don’t know if being a society soaked in social media has contributed to this. People feel they can keep up with your life without actually having to see or talk to you. Maybe it’s because they just don’t really care enough? Who know? Maybe I’m just bitter but I think I would have checked in with someone more often if they w...

 Don’t get me wrong, I’m delighted that Damien the bastard tumour is gone but now that the initial healing is over, it’s taking a while to adjust to this being my new normal. It hasn’t helped that the past week has been rough. Last Friday I thought I might have an infection in the wound, Doctor would not fit me in so I was sent to a poly clinic. Nurse there literally glanced at my boob and then prescribed antibiotics. Next day I started taking them and on Sunday I had the most awful reaction to them and physically couldn’t continue. So I headed to my local hospital in search of help. Doctor I saw this time thought I might have a very slight infection and gave me a cream. Since then the wound has calmed down but one patch is oozing slightly at times.  The only good point of the week was going for physio and basically being discharged because I’ve done well. I have new exercises and can start soft tissue massage. I felt quite good after this but yesterday probably used my arm to...

 I thought I would just cover a few things here that anyone who is themselves or who has a loved one going on this rollercoaster journey like me, might find useful or interesting. 1. You will feel better once you’re home, everyone does, but don’t expect to feel normal! Get help, don’t do too much and if help isn’t automatically offered then demand it!! 2, if you come home with a drain, stick it in a tote bag that you can put on your shoulder. Easiest way to carry it and not forget it.  3. Take the painkillers and don’t be a hero! You will know your own pain tolerance so judge it accordingly. For me, so far paracetamols have been enough. I took codeine once but didn’t like how I felt. 4. Your bowels will be a bit buggered up. Surgery does this and codeine can make it worse. I was given medicine to help and also am eating fruit and prunes! 5. Rest but walk as well! Energy levels will vary but I have found that once I started walking more, my general health felt better. 6. Do you...

 Well, here I am! Operation was on Wednesday and today is Friday. It’s been quite an intense few days. So we were told to get to the hospital by 8am on Wednesday to have guide wires inserted. This is when they use ultrasound to place wires into the areas to be removed to help guide the surgeon.  Only issue was that the radiologist had called in sick. They had managed to get another one to cover but we had to wait for her arrive. It was about 10 when she saw me. I was supposed to have 2 wires inserted - one for Damien the bastard tumour and one for an area that hadn’t been biopsied but that looked a bit suspicious. The radiologist though spotted a 3rd tiny area that she felt looked dodgy. She wanted to put a wire in it to ensure it was taken out too but had to get my surgeon to agree first. He was in theatre so there was a huge delay but he did agree. So by lunchtime I had 3 wires stuck in my boob and was waiting on the ward. Now I’d been told my op would be at 8:30am but at th...

 I didn’t expect to feel so tired when I haven’t even started treatment yet and I’m still 10 days from surgery. Apparently Damien the bastard tumour may be releasing proteins into my bloodstream that can cause fatigue, that’s nothing to do with it spreading, by the way. Also I’m taking no supplements at the moment so my hormones are completely mental which may account for some of the fatigue. Plus stress is probably another factor! As for fear. It’s there all the time. After diagnosis I had to go to bed completely exhausted so my mind didn’t start the spiral of blind panic. Now it’s pretty much a constant low level of fear with moments still of knee trembling terror. I think it’s normal to be scared and also I’m not good at waiting for things. It’s also a lack of control and fear of the unknown. So much depends on the surgery. It goes well with clear margins and my treatment plan simplifies. Worse case scenario means another 8 hour surgery with 12 weeks recovery. Then chemo, radiot...

Ok, deep breath, here I go. So breast cancer has been a lurking presence in my life for a long time. My mum had it twice. First time she had a lumpectomy and radiotherapy. Second time after repeated lumpectomies she ended up with a mastectomy and a decade on hormone treatment. I had it drummed into me about how to check and what to do to mitigate the fact that I was higher risk because of my mum.  Anyway on 26th April I found a tiny lump while in the shower. We were going to Coventry that weekend so I brooded on it until Monday and then pulled on my big girls pants and got an emergency doctors appointment. She confirmed it was there and very small (1-2 cm) she referred me immediately to the hospital and I got an appointment for 9th May.  I spent the time waiting for the appointment googling different things it could be apart from cancer. My appointment included a multitude of tests. I had a mammogram first, then a second one with higher contrast,  then an ultrasound where...

  I’ve always had stomach issues. It dates back to a particularly bad bout of gastroenteritis I caught in Ibiza when I was nineteen which resulted in me losing half a stone in five days and having to fly home early. The aftereffects lasted for a few years until I had a colonoscopy and my consultant prescribed me tablets that he said were strong enough to kill any unknown lurking parasites.   After this my stomach problems rumbled on and on and I learnt to deal with it. It got worse again about 18 years ago, and my doctor diagnosed IBS and a bowel infection. It was easy after this to assume that every stomach flare up or issue was IBS.   Things only changed earlier this year when I noticed that my stomach was worse after a few particular meals. Cheese seemed to be the only common factor and Google told me that the ability to digest cheese properly get less as you age. So, I put it down to that. Over the next couple of weeks, the symptoms seemed to increase, and I could alw...

  The tragic case of Sarah Everard has brought the sexual harassment and abuse that women must deal with in their day to day lives to the forefront of public attention. I have been both deeply moved and horrified by stories shared on Twitter. I found myself thinking more and more about Sarah’s family and the unimaginable grief that they are enduring.     My daughter is a survivor of rape. I will not call her a victim; she is a survivor who has risen above what happened to her. I will not go into the details, that is her story to share not mine, but I felt compelled to talk about how what happened has impacted on me and the rest of her family. You see, rape does not just hurt one person.   She told me over the phone the next morning. She was at university and it was not feasible for me to get to her immediately I remember that phone call as an almost out of body experience to me. I stayed calm, talked about practicalities with her and made sure she was not alone. When...

  2020. Where do I start? A lot of people would just say that it was a really shit year. For many people it was the most awful year of their life with loss and tragedy across the entire globe. Words that had never been part of our vocabulary such as lockdown, the R number and quarantine quickly became daily phrases. We all lived through a year that we could not have anticipated or imagined.   Now we have reached the very last day of 2020 and I ‘ve been thinking about whether, amongst all the bad stuff, was there anything positive? Has 2020 left me with anything good that I can take forward into the new year? I started thinking about things that I had achieved during the year and even made a list. ·         Learnt to make sourdough bread ·         Started riding a bike for the first time in 40 years ·         Grew lots of fruit and vegetables myself ·    ...

I t may seem strange, but this post was actually inspired by a Taylor Swift track. I was so excited when she released the Evermore album and could not wait to listen to it. It was when I got to track 5, Tolerate It, that it hit me. I instantly could relate to the song and when I read the comments on YouTube, I was struck by how different people had related to the song in different ways. Some talked of past relationships, some of their parents and some even thought it related to Princess Diana. I started thinking of how we often do accept one sided relationships where we put in all the effort without it being reciprocated.     I was genuinely shocked to realise that this may have been an ongoing theme throughout my life. This saddened me but also gave me clarity as situations and relationships that had made me sad at times or sometimes even constantly, suddenly made sense and I could see exactly what was wrong.    My relationship with my mother was often troubled but ...