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Hair today, gone tomorrow?

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 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 ...
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Mentally Tough

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 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...
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Bye bye booby

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 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...
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Delays and Detours

 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...
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Lip service

 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...
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A New Normal

 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...
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Recovery

 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...
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