Yet again it has been a couple of months since my last update. Honesty, I have not had the motivation to sit down and write about what’s been going on but thought it was about time now. So here I am!
I feel like I should start by covering off something that I didn’t answer in my last blog but many of you have asked about it. So luckily, I didn’t have HIV! I was hospitalised because of a nasty little bug that I can’t think of the name of now. This friendly little chap lives quite happily inside you until you have low immunity and then it pounces when you are most vulnerable. It’s not very common apparently and my breast care nurse had never even heard of it so I feel very special to have baffled so many medical professionals.
Time flies when you are having chemo
When I last wrote a blog I was in a very bad place and was having to weigh up feeling like total and utter shite with whether or not I should go ahead with the last two rounds of chemo. Honestly one of the hardest decisions of my life.
After a lot of deliberation, I decided that I could not live with myself if I didn’t complete the last two rounds. Despite the oncology team telling me that 4 would be “good enough” I knew they wanted me to do the last two.
So I ONLY BLOODY DID IT! Woop woop. I went ahead and pushed my battered little mind and body through rounds 5 and 6. I have to say I am chuffed with myself for ploughing through it but wow, what an anti-climax!
My chemo has not been the Instagram story that many of you might well imagine it to be. There was no bell to ring, no helium balloons, no “Congratulations” cake, no big bang at all. It just happened. I didn’t even cry tears of relief that I thought I would. I didn’t have a party to celebrate, a meal out or a bottle of champagne. And don’t get me wrong, I am ok with this but it just goes to show, you can’t believe all you see or read on social media. It was not an experience to be exploited. I completed round 6 (makes it sound like a level on a computer game) and ran for dear life to get out of the chemo ward as fast as I possibly could.
The final two rounds were reduced to an 80% dose to help me get through them. So whilst the side effects were still there, they were not as bad as the other had been. Hair kept falling out but also decided to grow back at the same time!
Another trip to A&E
This time I’m pleased to say it wasn’t for me!
Just before setting off for the 5th round of chemo, Spence came running in through the front door. “I think I’ve got a bee in my boot” as he whipped off his boots. It wasn’t a bee. His black socks had gone white! He’d been off doing a jet washing job and managed to splash the horrific acid that he uses to clean patios inside his boots! This had soaked through his socks and was eating into his skin! I made him jump in the bath and wash it off as much as he could. Not being much of a nurse I didn’t really know what else to do. My first aid kit consists of some plasters and a tube of good old Germolene!
We headed up to the RUH. While I was in chemo, Spence went to A&E to have his feet looked at. I was in chemo for 3 hours, he was in the A&E for 4! So I just sat and waited until he was done. They made him run his feet under cold water until they were numb then scrub the skin off with a nail brush! This was in an attempt to get the acid off and neutralise the ph levels in his skin. Even the thought of it makes me feel weird. He was patched up, covered in dressings and we were off home. For the next few weeks he had to regularly attend the burns unit at Southmead to get the dressings changed. Luckily they are healed now and he has learnt his lesson. Mum bought him some waders for his birthday so it can’t happen again!
The Great Re-emergence
After round 6 of chemo, I was climbing the walls to be able to get out and see people and get back to a sense of normality. As soon as my immunity was back up to acceptable levels, I was itching to do something, anything! Even something as boring as being able to nip to a shop and get some groceries without the fear of someone sneezing on me and killing me!
So me being me, booked up seeing someone every single day to make up for months of incarceration! Little did I know that whilst my mind was ready for this influx of people, my body was not. I had taken a battering and although it might not show, I was soon reminded. I’d pop to meet someone for lunch and have to nap all afternoon. I’d go for a short dog walk and then not be able to get off the sofa for the rest of the evening. I found this really frustrating and got very angry at my body for letting me down. But it hadn’t let me down at all. It had actually done a bloody good job. Why was I being so hard on myself? My body had just taken the beating of its life. I’ve had major surgery and then every single cell in my body had been poisoned and had to regenerate 6 times in a row. It had done me proud really and I need to have a bit more respect for it.
I really struggle with how I look right now. I was always quite lucky that I did not feel I needed to make an awful lot of effort to “nip out”. As long as my hair was washed and I’d wacked on a bit of mascara and bronzer I’d feel ok if I bumped into someone.
It now takes me a lot of witchcraft and magic before I can leave the house with any confidence. I feel a bit like Frankenstein’s monster made up of bits and pieces.
I’ve been lucky that everyone who sees me has been very complimentary about how good I look and I think quite surprised that I’m not pale and bald. But they are going to be right? Noone is going to tell someone who has had cancer that they look like crap!
You would think it would be a good thing that I’m getting all of these compliments…. “Wow. You just look normal”, “you can’t even tell you’ve had cancer”, “you just look like you”. But I also sometimes feel that not looking like your stereotypical cancer patient gives off the impression that everything is fine and normal but unfortunately that is not the case.
Very few people got to see me when I was really ill. When I was pulling my hair out in handfuls. After I’d undergone my mastectomy. When I was in so much pain I was hospitalised or couldn’t get out of bed and eat or drink for 5 days at a time. When I lost my sense of taste and would cry every time I tried to enjoy something I fancied to eat. When I didn’t have the strength to get up or down the stairs on my own. When Spence had to shower me and feed me because I was too weak to do it myself. When I cried for hours and hours because I couldn’t handle what was happening to me and I was coming to terms with mortality.
I think it just goes to show that you can’t judge a book by its cover. Whist I might look “normal” I feel anything but. The brave face that I spend an hour drawing and sticking on each day is covering up the most horrendous experience of my life and the scars that I have to go with it.
Bye Bye Port
One of the other things that I couldn’t wait to do was to get my port removed. As you may recall from my other blogs, this was inserted just below my collar bone on my right hand side to allow the oncology team to easily take bloods and give me the chemotherapy drugs. It had a tube that ran up through my neck and then down to my heart. This was tight and when I turned my head could feel it pulling. It was raised under my skin and I hated touching it. It made driving very uncomfortable. It was one more thing that was a constant reminder of the fact I had cancer.
Off I trotted to the RUH. After undressing to the waist and gowning up, I led on the bed ready for the procedure to begin. The first thing that caught my eye was that there was blood on the ceiling in the operating theatre. When I pointed this out to the nurses they were in shock. “oh. God knows how that got up there!?” The surgeon suggested getting a step ladder and wiping it off once we were done.
I had my head tilted to the left and covered with a blue paper sheet which made me feel claustrophobic. The nurse tore a little hole in it for my eye to peak through, but I couldn’t see much. After the surgeon had confirmed who he was and checked who I was he started. I was anxious about having it removed but it was very painless. The most painful bit was the local anaesthetic which stings like hell.
By far the worst bit is the sound of an operation. I could hear him cutting at my skin then felt all the blood run down my neck and in to my hair. The next thing I heard was him picking at the line trying to hook it out from under my skin. Like trying to get a needle under a splinter or an ingrowing hair. The surgeon had a registrar with him so was talking her through the whole thing which was a bit unnerving but also quite interesting.
Once the port was out I was stitched up. They put super glue on the wound too just to be extra safe. I heard the surgeon say “don’t worry, I’m not going to do this, but every time I put the glue on I want to blow on it to make it dry quicker” I had to laugh. Something that we’d all probably do without even giving it a second thought. But not the most hygienic thing to do on an open wound.
I waited for the glue to dry, was sat up and then off I went.
Awkward silences
Something that I’ve become very aware of recently is how uncomfortable cancer makes other people feel. There have been lots of awkward silences, even from the closest of friends and family and people just don’t know what to say to me. And I think I’d be the same. But just so you know, I don’t mind talking about what has happened at all. PLEASE don’t avoid it with me like it’s never happened. You can ask me ANYTHING about it and I will happily tell you all the gory details. I’d rather people were educated on it than not know anything.
You know me. I won’t hold back on telling any of you what it’s been like so if you ask, be prepared to hear all about it.
I went and got my nails done the other day. Something I’ve been waiting to have done for months and months. Whist sitting there in the nail bar, the lovely Vietnamese man who was doing them started to engage in conversation. “so…. how are you? How have you been? And how was lockdown?” in my head I quickly went over what to reply… “well funny you should ask actually. I got diagnosed with breast cancer, had a mastectomy, had 6 rounds of chemo and two stays in hospital. So its been a bit shit really. What about you?” after second thoughts I just replied with “yeah it been ok thanks. Just quiet” I thought he’d probably prefer that reply.
Radiotherapy
“oh it must be such a relief that your treatment has finished now?” something I get ALLLLL the time. and yes, it is a relief that chemo has finished but I’m still a long way off anything being even the tiniest bit finished. The next step for me is Radiotherapy.
A couple of weeks ago I was back up the RUH for my radiotherapy planning clinic. This was quite quick and painless. It involved meeting with a couple of people from the team and being measured up ready for the radiotherapy to start tomorrow.
I was asked to undress to the waist and lie in a CT scanner on what I can only describe as a human body sized version of the old Clarks shoe fitting machines. I had to lie on the table and bits and pieces were moved in around my position to hold me in place. The radiologist was reading things out like “7b. 36cm. right 21” These were the positions that table was the set to.
The next thing they had to do was tattoo me. I now have 3 really boring new tattoos. Dots. One between my boobs and one on either side of me along my bra line. I did ask if they could do something a bit more interesting than dots but they said “no. These will be the guides they use to line me up in the machine each time I go for treatment. It saves them having to measure me each time and makes the whole process very quick. However, I’m sure one of them has rubbed off so that might be interesting tomorrow. Think I scrubbed it to hard.
I’m having 5 sessions of radiotherapy. Wed, Thur, Fri this week then Mon, Tue next week then that bit is done. Initially when I was first diagnosed it was going to be 15 but since then, it’s been decided that 5 stronger rays will be just as good as 15 weaker ones. The process itself only takes 2 minutes. 1 minute per beam.
I’ve been told that the side effects from this should be a lot kinder but they still sound like something I’d rather go without:
- skin may become pinker or darker over time; feel tender, dry, itchy and sore; peel or flake as treatment goes on; blister or become moist and weepy
- Swelling of the breast
- Pain in the breast or chest area
- Hair loss in the armpit
- Sore throat
- Tiredness and fatigue
- Lymphoedema
- Change in breast shape, size and colour
- Tenderness over the ribs
- Hardening of tissue
- Broken blood vessels
- Effects on the lung or heart
- Weakening of the bones in the treated area, which can lead to rib and collarbone fractures
- Damage to the nerves in the arm on the treated side, which may cause tingling, numbness, pain, weakness and possibly some loss of movement.
- Developing another type of cancer in the future
Tamoxifen
Tamoxifen pronounced “Tamoxi-bollocks” by the breast cancer community.
Tamoxifen is a hormone therapy for breast cancer in both women and men. It lowers the risk of early breast cancer recurring after surgery or developing in the other breast. It can also control advanced breast cancer for some time. It works by locking on to the oestrogen receptors to block oestrogen from attaching to them. The oestrogen cannot then stimulate the cells to divide and grow.
Sounds great! However this little miracle pill comes hand in hand with all sorts of fun. The main thing being the onset of early menopause. I won’t go in to all the side effects of that as it will scare the living daylights out of all of you but it’s not great. I just hope any side effects that I get will be manageable as I have to take this ba**ad pill for the next 10 years.
I’m already looking at buying linen clothing, cooling pillows, lower tog duvets and a huge, elaborate, peacock feather fan ready to cope with the hot flushes! And I’ve warned Spence about the mood swings and memory loss to which he told me that would be no different to how anything is now. Little does he know….
So what happens now?
Who knows. Anyone? I guess I start to try and get the normality that I have craved for so long back.
I need to get radiotherapy out of the way whilst at the same time try and do some gentle exercise to get my strength back up. I need to remember what it is like to have a job after being off for 8 months. I must learn to live with and come to terms with what has happened to me. The fear of it coming back will be with me forever I’m sure but like grief, I know it will get easier with time. And if it comes back? Then who knows. I’ll have to cross that bridge if and when it comes to it.
All I do know for now is that I want to see people and do “stuff” I want to spend my money on memories and not stuff. Don’t get me wrong, I’m not going to sell my house and travel the world and live life to the fullest, but I want to make more effort to do things I might have put off in the past.
I’ve been blown away by the people who have been in touch and supported me through this. Friends from primary school, secondary school, uni! People who I’ve not had in my life for many, many years, some real “blasts from the past” who I never thought I would hear from again, have all come forward with kind words of support and things to make me smile and brighten my days. It means so much. Not only to know that you have read my blog, but to reach out to me and let me know I’m in your thoughts even after all this time and so many years. I’m looking forward to catching up with you all when I can.
Sadly, I’ve also lost some people along the way. This both upsets and baffles me. I know that everyone has their own stuff to deal with and lockdown has been hard for us all but some people I considered close to me have been very distant for one reason or another. I’d never question them on this but it does play on my mind a lot. Maybe what I was going through was too much for them to deal with? I have just learnt from this not to expect people to treat me the way that I would treat them.
I don’t think this will be my last blog although it feels it might be going that way. Maybe in true Project Manager style I’ll revisit this experience. Undertake a “lessons learned meeting”, discuss what went well, what didn’t and what I can improve on next time. If there is a next time. But let’s all keep our fingers, eyes, legs and toes crossed that this bit of my life has well and truly gone.
ill more than likely update you on radiotherapy and the fun and games that is the menopause. And in a years time, tell you all about the reconstruction to build my new boob!
Watch this space…