Hair loss is one of the most awful experiences and one which I had to endure during chemotherapy. Those of you who have followed my blog will know that I cold capped and managed to keep a decent amount of hair. Nevertheless, since finishing chemo my hair became harder to maintain due to the regrowth making battle with the thinned lengths. As if that wasn’t bad enough, I had a range of colours which would put a rainbow to shame. So the time came to have it cut – very short. You may be wondering why I went through the pains of cold capping to then have all my hair cut off? Fair question. What I would say is that I appreciated having the look of longer hair underneath the various headscarves which I wore throughout treatment but that I now need to encourage my hair to grow more thick and even in colour. That is what led me to go to the hairdresser and trust me, I thought long and hard about it.
So here we have it. My hair in pictures, or ‘From hair to there’.
It is taking me a while to get used to the cropped look but I am happier with the overall thickness and colour of it. I suppose in a way my hair is looking healthier and therefore mirroring how I feel. One major plus point is how quickly it dries after washing! No more waiting around for me to get ready in the mornings…apart from the make up, but that’s for another blog post.
Last week I had my first visit from Healthcare at Home who will be administering my 3 weekly Herceptin injections. It seems they operate quite independently from the hospital so I had to go through a lot of information with the nurse who visited me. She had called me the previous day to indicate what time she might arrive and I had received a booklet in the post to allow me to complete all of my personal information and to keep track of my treatment.
On treatment day, the nurse phoned to let me know she was running late and would be with me an hour later. It turns out she has a rather large geographical area to cover and the traffic was bad so I couldn’t really complain. She eventually arrived, armed with several bags and a massive sharps box. After initial introductions, measurement of blood pressure, temperature and a few questions I got my injection which took a good 5 minutes to complete. The plus side was that it barely hurt at all. This could also have been due to the fact that the drug had in the meantime come to room temperature.
After the injection, the nurse continued to ask me questions and she recorded everything electronically. She explained that the Herceptin visits used to last 2 hours but that they have very recently changed to just 1 hour. Before leaving, she checked my blood pressure and temperature one more time and that was the end of the visit.
Unfortunately, I have suffered some side effects this time, including a sore tongue, loss of tastebuds, bouts of sneezing, a runny nose and feeling nauseous on occasions. In addition, the skin on my feet has been peeling and causing my toes to be quite sore. I have also noticed sometimes I have pins and needles in my left hand. Whether this is all down to Herceptin is hard to know as I also started taking Tamoxifen a few weeks ago. Time will tell.
Having completed chemotherapy and radiotherapy, the question of when we might take a holiday was coming up regularly. Much as I love a holiday, the thought of packing and making sure I was covered for all sorts of side effects that are still lurking, put me off a little bit. In fairness to my hubby though I tried to summon up the enthusiasm as he definitely needed a break. As it happens, our daughter was working in Disney World Florida for the summer and we decided it would be lovely to go out and see her while she was there.
We talked it through with the radiographer and he was very positive about the idea of us going to Florida as long as I took some sensible precautions. These included taking regular walks around the aeroplane, wearing flight stockings, refraining from drinking alcohol during the flight, wearing factor 50 when out in the sun and showering chlorine off my radiation affected skin. Still I was apprehensive about the long journey and having to walk a lot so I chatted to my friends on the forum. They replied with a resounding, “You must go! What are you waiting for?” One of my friends even advised me about a lanyard you can get at the airport which informs the staff that you have a hidden disability and enables you to get special assistance if necessary.
Within a very short time we found flights and a peaceful hotel outside of Disney. Our daughter was really excited at the prospect of us flying out to see her as she hadn’t expected this at all. Everything bar the journey to the airport was booked on the Friday, ready for us to set off on the Monday. This left very little time to pack but somehow we managed it. By Sunday we organised to stay at a hotel at the airport as we had an early flight the following morning. Our journey to Manchester left me feeling I may have bitten of more than I could chew as I struggled with simple things like pulling my own suitcase along and walking the length of the platform. However, by the following morning I had some newfound energy and we checked our luggage in to the comment of, “You’re travelling light!” Given the short turnaround from booking to travelling, this was hardly surprising. I did suddenly panic at the thought of items left behind though!
The lanyard worked fantastically well. We got priority boarding, meaning I never had to stand around for very long and on the plane we got moved to the extra legroom seats. In addition, we got our entertainment package upgraded to premium and we were given extra drinks and biscuits. The crew couldn’t have done more to help. Upon arrival at Orlando we got moved to the front of the queue at passport control. It appears they also provide assistance for people with lanyards there which was a pleasant surprise.
By early evening we checked into the Hilton Parc Soleil hotel and were greeted with a lovely giftbag in our room, containing a coffee mug, chocolates, pretzels and celebratory balloons. My husband had arranged the surprise without me knowing and Stephanie from the Parc Soleil had organised for the goodies to be placed in our room. We waited for our daughter to finish work and then arranged to pick her up from her accommodation. It was wonderful to see her and we chatted until late at night before driving her back to her temporary home.
The following day we spoke to Felix from the reception team about moving from our room to one of the suites so that we had more space to relax during the frequent Florida thunderstorms. He was doubtful at first as the hotel was fairly booked up and busy. By lunchtime however we were able to move and we were delighted to have a balcony, full kitchen and dining table, as well as a living area. This also meant our daughter could sleep over which she did on a few occasions.
The next few days were spent sitting by the pool (in the shade!), swimming and visiting Disney parks. Our daughter and her friends managed to get us free entry no less than 3 times so we had fun going on the rides and even went to Mickey’s Not So Scary Halloween party which was great. In the parks we set up Disability Access Service which saved me from having to queue up for rides. All these little things helped so much as I would have been exhausted quickly without this service.
At the weekend we travelled to Jacksonville to spend the day with my husband’s brother and family. It was lovely to see them and have a good catch up. Before long our holiday was coming to an end and I realised that cancer had not been at the forefront of my mind for the first time in months. Admittedly, there was always a reminder when I was feeling below par or having to be extra careful in the sun and swimming pool but at least there was plenty of distraction.
Our daughter was due to finish her placement at the end of our holiday so we flew home together which was lovely. Back home, jet lag set in and I had a mountain of washing to do but it was all worth it. The break did us the world of good and helped my recovery enormously.
This was my final week of radiotherapy and unlike chemo, time has flown by. I think it helped that all of my appointments were early in the morning, so I could forget about it for the rest of the day.
As I mentioned in my previous blog post, this week’s treatment was a bit different as these were booster sessions. The difference was that there was no need for a daily photo of the area to be treated and I didn’t need to hold my breath during treatment as the beam was aimed solely at the scar site on the side of my breast. So for these sessions, the radiographers had to draw dots on my skin every day to mark out the area and then position the equipment so that it was touching my skin. The bed was moved at an angle whereas the last few weeks it remained straight but was raised. The actual set up took longer than the radiation which only lasted around 30 seconds.
On Monday morning, I had my treatment review straight after radiotherapy. Hubby took advamtage of the fact that we were there for longer than normal and went for a bacon roll from a nearby van which he had spotted during the first week. So he was slowly making his way back across the car park while I was trying to explain to the lady who was doing my review that this was part of the ritual.
The treatment review consisted of questions about my skin, my appetite, whether I have experienced any pain and how my range of movement is in my left arm. I was happy to report that I hadn’t really experienced any problems in anything she asked me about, however afterwards I realised that tiredness didn’t get mentioned and yet that’s been the worst part for me. Having said I had no skin problems, lo and behold, the next morning the radiographer spotted that my skin was starting to break down and she promised to keep an eye on it. By Tuesday afternoon it was quite sore so on Wednesday they supplied me with some gel to apply to the area. The gel acts as a barrier – luckily there weren’t many radiation treatments to go.
I’ve mentoned before that there is music playing in the treatment room – well on Thursday I was treated to a Beatles medley. First off was Let it be, followed by Help! (which made me laugh) and finally Ticket to ride. This prompted me to say to the radiographer that I should have a celebration theme for my last session on Friday (Kool and the Gang anyone?) Although she was in agreement, it was not to be as I had 2 different members of the team on Friday so had to make do with listening to Tina Turner instead.
Friday felt strange as I was glad it was the last session but at the same time it felt odd that I wouldn’t need to go back again. This has been my morning routine for 4 weeks and it has been my security blanket. Now what will I do?
I guess there’s the small matter of Herceptin next Thursday followed by a blood test and echocardiogram on Friday. I’m not off the hook yet…
In the meantime, a little celebration for this milestone. A trip to the cinema, a Chinese takeaway and a little glass of fizz. Normality is starting to resume.
The side effects of radiotherapy are much more noticeable this week. I have had 15 sessions now but by the 11th treatment, I already noticed a darkening of the skin on my left breast. At first it looked like a suntan but since the other breast remains white and since I haven’t sunbathed topless, I knew this was an effect of the radiation. I could almost do with having radiotherapy to the other side as well to even out the suntan!
Tiredness is still a major problem. I suffer from it more in the afternoons so I have been trying to get things done in the mornings while I still have some energy. Having said that, by the weekend I need to lie in like a teenager as I feel the effects of an entire week’s radiotherapy.
The other things I have experienced are some tingling of the skin, a stiff and sore shoulder and general pain in my left arm. The skin is easily relieved with Aloe Vera gel straight from the fridge. Lovely and cool! The sore shoulder and arm are a bit annoying, especially in bed as I can’t lie on my left side. I have been doing my Breast Cancer Care stretches any time my left arm feels a bit swollen as I really don’t want lymphoedema to kick in.
Best bit about radiotherapy: the music. My favourite song this week was ‘Turn’ by Travis as it was very apt with the machines turning around during my treatment.
Worst bit about radiotherapy: the breath hold. Keep feeling like I’m about to burst!
Just 5 more sessions to go and no breath holding for this lot.
I am now officially halfway through my radiotherapy treatment and it has flown by, unlike chemotherapy which dragged on miserably for months. The tiredness has continued to consume me and I have been relying on afternoon naps almost every day. Happily, my skin is not showing any signs of soreness yet which is probably partly due to Aveeno being my best friend at the moment.
The appointments have been exactly the same as last week, other than one session where I was measured up for the ‘boost’ which will happen during the last week of treatment. The boost is given via proton beam radiotherapy which basically attacks the scar where the tumour was removed. So far, radiotherapy has been given to the entire breast area whereas this will be more specific.
The measuring up involved the attachment of a metal device with long rods to the usual equipment. I was then told this device would actually touch my skin – good job they warned me as it was freezing! The radiologists then proceeded to draw lots of marks on me and carry out a tracing so they know exactly where to position the equipment for the last 5 sessions. Apparently, I won’t need to do any breath holding for the boost sessions – yay!
So, 10 more sessions to go and then this treatment can join chemo in my distant memories. Hubby will be relieved that we won’t need to do the mad dash across the city in rush hour traffic for much longer. In the meantime, he can make the most of the free drinks and fruit, but sadly no bacon sarnies. The downside of a private hospital?
I’ve been meaning to write about this topic for a while so credit must go to Marie Ennis-O’Connor (@JBBC) for the title of this blog post and indeed the prompt for me to write this. Marie has been including my blog in her weekly round-up for some time now and I am grateful to her as this means I can reach out to a wider audience and hopefully support more people going through breast cancer treatment.
After I was diagnosed with breast cancer and having been signed off work for the foreseeable future, it took a while to rethink how I was to spend my days. I didn’t want cancer to dominate every minute of my time so it was important for me to ensure I was doing some things which make me happy.
I started by making a list (yes, those of you who know me will know me as a list maker) of things I enjoy doing. The list included things such as: learning Spanish, reading, listening to music, playing the keyboard, spending time with family and friends, walking, watching ice hockey and writing. I called it my list of daily activities. It meant that whenever I was consumed with negative thoughts I was able to distract myself by doing one or more of these activities. Unfortunately, cancer treatment has at times made me feel very ill and has caused me to have low/no immunity so I have sometimes been limited as to which of my favourite activities I could take part in. Frustrating but a reality.
As well as my own list of activities, I have gained more ideas of how to spend my time doing nice things, mainly from our Macmillan unit. After numerous visits to the hospital, I had collected some leaflets of various support groups and activities for people going through cancer treatment (and beyond) so I started to attend some of these as well. The following activities are things I have enjoyed or still enjoy taking part in:
Look Good, Feel Better Workshop (one off session)
During this 2 hour session, several beauticians gave advice regarding skincare during chemotherapy, as well as useful tips such as how you can recreate eyebrows when they have fallen out. Every participant came away with a fantastic goody bag full of skincare products and make up.
This is a support group who meet twice a month: once in the afternoon for tea, cake and a chat, and once in the evening where they have guest speakers or workshops. In addition to the regular meetings, they also organise many events, including a summer barbecue, sponsored walk and more. Although this group is local to me, there are bound to be similar groups in other areas.
Beyond the C Choir
The choir meet up once a month and sing songs from well known musicals as well as other famous tunes. They sometimes perform and raise money for the new cancer centre. It’s very relaxed, great fun and we have a cake break halfway through. They tell me singing releases endorphins so it’s a great way to cheer myself up.
So all in all, I am managing to live fully each day by making sure I do at least one thing (and often many more) which I enjoy. I hope it helps some of you out there going through cancer treatment to try to make the most of each day.