Just over a year to the day of being diagnosed, I was invited to attend a follow up mammogram. Strangely, I wasn’t feeling too nervous as I fully expected the intensive treatment I have been through (and am still having) had sent the cancer packing. I was more apprehensive about the procedure itself rather than the result because I found it pretty painful before treatment, never mind with healing still going on. I was right to be worried – it hurt a lot! Nevertheless, my appointment was soon over so of course a visit to the cafe was in order for a bacon sandwich. (Hasn’t he gone off them yet?)
Waiting for the results turned into a long haul as 3 weeks later I hadn’t heard anything yet. Whilst reassuring myself that if there was anything to worry about, I would have been notified by now, I was getting frustrated that I couldn’t tick off another milestone. Finally, 3 weeks and 2 days after having my mammogram, I received the great news that there was no evidence of malignancy. What a relief!
So now I can say I am officially NED (No Evidence of Disease) which is something I’ve been hoping to say for a long time. Whilst treatment is still continuing, at least I know it’s done the job and kicked cancer’s behind.
Today is my Cancerversary. It is exactly one year since I was diagnosed with breast cancer. This may not seem like a reason to celebrate but the fact is, I’ve come a long way since that dreadful day. I must admit, I find it hard to read the early blog posts I wrote about my diagnosis and the effect on everyone around me. Since then I have had a variety of scans and biopsies, 2 operations, 5 months of chemotherapy, 20 days of radiotherapy, 8 doses of Herceptin and I have started 10 years’ worth of Tamoxifen tablets. And it’s not over yet. This week I have had appointments with the oncologist and the radiologist and I am due my 9th Herceptin today.
Nevertheless, I have come a long way, not just in terms of treatment but also physically and mentally. I am not yet at a stage where I can put it all behind me and I doubt I ever will be but I am in a position to reclaim some of the elements which signify a normal life for me. I mentioned in my last blog post that I have gone back to my aqua aerobics class and playing badminton. Moreover it is lovely not to have to avoid busy places, meaning I can go shopping again (Hurrah!) I have also visited my school several times and caught up with all the staff and children. Having said that, I am still inclined to run a mile if anyone near me coughs or sneezes.
In terms of my appearance, I have also come a long way. My hair is growing back, albeit grey! Try explaining that to the inquisitive children at school – Why is your hair grey? (Only the innocence of a 6 year old can get away with that question!) Happily, I have a full set of eyelashes and my eyebrows are returning. I have shed the extra pounds caused by steroids and through eating too much of the wrong foods during chemo. So that’s all positive. Am I back to full strength though? The answer is no, not quite.
The hardest thing is to not sound like I’m whinging over small things because to me that’s exactly what it sounds like. In the grand scheme of things a few broken nails, sore fingertips, sore arms (from vein damage and surgery), stiff joints and tiredness are nothing compared to the way I felt during chemo treatment. However, the fact is these little things are a constant reminder of the horrible time I’ve been through. The oncologist, who has never shown a grain of sympathy until yesterday, almost had me in tears when he acknowledged that I have been through a lot. He advised me that it will take a while to build up stamina and that I should push myself but not too much. He explained that chemotherapy puts a lot of strain on your body and puts you into low energy reserves (the catabolic, breaking down phase mode as opposed to the anabolic, building up state). The time taken to recover varies from one person to the next so he was unable to tell me when I might regain more energy.
The radiologist added into the mix that I can blame Tamoxifen for some of the side effects I am experiencing. “How are you getting on with my friend, Tamoxifen?” He asked me. “Oh yes, it’s the best.” was my reply, followed by a long list of complaints. He explained that this is due to the cumulative effect of everything coming together, as well as the body being deprived of coping without oestrogen levels as they should be.
So how does one celebrate a Cancerversary? In my case, by acknowledging that I have come a long way and enjoying the fact that I was able to go to my exercise class today, eat whatever I wanted and feel fairly normal. In my husband’s case…a takeaway seems in order!
I’ve come to a defining point in my cancer journey. Having completed the most harrowing part of my treatment, I have started my road to recovery. Although treatment is far from finished (I have 3 weekly Herceptin injections until April 2020 and daily Tamoxifen tablets for 10 years) the less severe side effects from my current therapies are at least allowing me to get on with some of my favourite activities.
Chemotherapy was certainly the most limiting in letting me live as I normally would. Low immunity and the very serious risk of infection was the main reason for me not being able to take part in my weekly aqua aerobics class for example. I am happy to report that I have gone back to my weekly class and better still, managed not to pick up any bugs so far. There was certainly a temptation to go to the extreme at first and fill my days with exercise – going back to aqua was great so why not do it twice a week? Then there was the opportunity to try out barre, which is a ballet inspired exercise class so I signed up for that as well. Also, I really wanted to take part in a very energetic dance based exercise class. Before long, I was doing 4 classes in one week, along with regular walks. Yes, I was overdoing it and my body complained bitterly. I woke up with backache and my vein damaged ‘treatment’ arm was very sore. I was also immensely tired.
So there’s a lot to be said for pacing yourself and not going too mad (like I did at first). I have now come to a steady arrangement that suits me: an exercise regime that makes me feel well and a reduction in the aches and pains. I am enjoying doing some ‘normal’ things and I’m feeling the benefit of doing regular exercise.
I started this blog post by saying I have come to a defining point in my cancer journey and although life will never be the same again – there is always the underlying fear of a recurrence and I am still putting up with side effects from my treatment – things are slowly getting better in many ways. Dealing with having a life changing diagnosis like cancer never gets easier but I have got stronger over time.
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.