Weeks 54-58: Thursday 30 November 2017 - Wednesday 03 January 2018.
Wow. Happy new year peeps!
I don’t really do resolutions for new year any more... my main focus nowadays is just celebrating being alive 😀.
However, if I have to narrow down some goals, I think maybe doing my blog more frequently would possibly feature highly so I don’t end up writing a small novel in the small hours of the morning when I should probably be trying to even out my fatigue levels 😂. However, I have actually been out busy enjoying myself in the main, so I am not going to beat myself up about it.
There’s 5 weeks of material to cover in this blog, so if you are reading this, pour yourself a cuppa (or a stiff drink), sit back and prepared to be bored, entertained, shocked, uncomfortable and/or use it as reading material as you sit in the toilet.
My last blog I had left off just as I was about to try snowboarding for the first time, and I was awaiting my ultrasound. Well, how things have changed since then. And I can talk about everything with true frankness now that I know everything is actually ok 😀. (Woo hoo!!! Much cause for celebration and lots of prosecco 🍾🍾🍾.)
So... first off, snowboarding.
I think if this past year has taught me anything, it is that I have probably been too much of a workaholic in the past. Whilst I have loads of friends and family, and I was certainly never a hermit, actually in recent years I have had quite a restricted life. I didn’t do any new sports, I didn’t have time for regular hobbies, and I spent a lot of time fixing things / situations / people both in and out of work. So, snowboarding was the beginning of trying new things, getting an adrenaline rush, and laughing lots. And getting a sore arse.
I went snowboarding with my godchildren and their dad, and apart from them putting me to shame skill wise, I had such great fun, and laughed lots and managed to go down the baby slope with relative ease and balance. Until the two times where I fell. Backwards 😱.
Don’t get me wrong, I was not worried about my pride being hurt, and the second fall was required to avoid hitting my god daughter, but for the following few days after the event, my coccyx hurt more than I let on. Let’s just say I think I would have given John Wayne a run for his money. If I could have ran that is. 😜.
The whole thing was a great experience from wearing multiple layers (I think I may have been sponsored by Trespass that day), figuring out how to put the boots on, getting on to the snow itself, and actually discovering that I clearly missed out on never trying skateboarding as a child... my thighs were a bit achey towards the end of the session, but I must admit I also enjoyed using the snowboard as a sledge down the big hill at the end too 😀😀😀.
I was so excited about rediscovering snow sports, that I have committed to taking my niece back for ski lessons in the very near future - hurray!!! (I have not skied since my last outing on dry slopes a whole 27 years ago - where I ended up slicing my face open on the dry ski mat at the very bottom of the run!)
Anyway, immediately after coming back from snowboarding I had to get ready for a cocktail night out with one of my other friends. That was also a good laugh, although I will forever tease her about not wearing sensible boots and us walking the entire length of Princes Street looking for food before we got drinks 😀.
(As an aside, all this exercise I am seeing as a positive thing to help strengthen my bones... you could almost say it has all been medically advised 😀😀😀.)
The Sunday of that weekend also saw me go out Christmas shopping briefly with my mum and sis.... and then I entered a period of deep sleep... 😀. By this point my internal batteries had properly drained, but I wouldn’t have changed a minute of it. And I know this definitely means I have improved when I no longer have to go for a daily nap of about 3hrs in the afternoon 😀😀😀.
The following week I spent quite a lot of time with another friend who is in the middle of moving house. A lot of clearing was still to be done, and she was very good at making me sit down as I peered over my glasses with arched eyebrows over everything she wants to keep.
(Before anyone judges me for being a terrible friend... I should point out that she asked me to help her downsize.... it’s just that 2x large 4 bedroom houses does not go easily into a 2 bedroom flat... so it’s a physical impossibility for her to take everything with her 😳.)
Other social events I have managed to cram in include:
- supporting my niece to raise money and awareness of cancer research at her school;
- trips into the office for coffee catch ups;
- hosting my book club besties for our Christmas night in;
- going out dancing with friends;
- LOTS of karaoke;
- a few different cinema trips;
- and my Irish best friend literally flying in to see me for 24hrs, over the worst few days I have gone through recently.
Oh and I also had a CT scan. That in itself was funny... with hindsight. 😀
First off, they couldn’t get the cannula into my arm as my veins had ran away in fright... then they couldn’t get enough dye into me whilst inside the machine as they think they had a bad batch of cannulas... but thankfully it was deemed enough to be able to see whatever they wanted to see... however my heart went into a bit of a flutter so I had to have a heart monitor put on me to check everything was working ok... (turns out I do still have a heart ❤️.)
The results of the ct scan came back just before Christmas as absolutely clear and I just have bone pain that I have to live with. There is nothing sinister residing in me that’s going to burst out like an unwanted alien anytime soon 😀😀😀.
Anyway... Before I get to the crappy blunt part, I just want to say I have had the best couple of weeks having fun. And actually I plan to continue doing so, in numerous ways, as and when opportunities become available. Whether that’s my newly planned short break to the Canaries, more nights of dancing, learning how to ski, or indeed looking forward to a trip to New York with Irish Sue... all things are going to be great 😀.
I already had a new appreciation for life after getting through the last year, but whilst the last 5 weeks have been good fun, they have also been a period of real torture in the limbo stakes of waiting for various tests and results.
So... where to begin now? From the outset, I deliberately decided I was going to try and not be over anxious about every twinge that I felt following cancer treatment. I have spoken to enough people in various support groups to appreciate that once primary treatment is over, we are told to report any symptoms to Oncology, Breast Cancer Nurse or GP straight away.
But, I hate making a fuss.
And, I hate the thought that I may be classed as a hypochondriac.
And to be fair, I also knew that the radical surgery and harsh chemo regime had long term side effects. (Or ‘consequences’ as some in my support group refer to them. A much better terminology I think!)
Anyway... a lot of the time I just ‘suck it up’, as I am fond of telling my nieces and nephews to do when they don’t want to do something 😜.
However, over the last 6 months, I have had increasingly sore bone and joint pain. I was prepared for this, and I knew having my ovaries removed in October, triggering menopause may make it worse due to risk of osteoporosis. However I had also schooled myself against thinking too much about the pain as to be quite blunt, I had a feeling it may be psychosomatic pain... ie all in my head. So I ignored a lot of it, and just kept taking painkillers.
Following my initial consult with GP, and the x-ray which told me I had no fractured ribs, I had been due to see my Plastics Team to check on my reconstruction job. That appointment went fine, with the feedback that any additional ops won’t be for at least another 6 months to let the tissue settle down and give my body a chance to recover.
So, in summer time 2018, they will assess if I need revisions to my new boobs (top-ups via liposuction from my thighs), do the nipple creation, and ultimately 3 months later, the tattooing to make them look ‘natural’ (😂😂😂 at that phrase by the way). This whole thing is definitely taking longer than I had envisaged, as I had really hoped to have all cancer treatment and surgery done and dusted within 12 months you know!
Anyway, the Plastics registrar has asked about the x-ray, and then decided that it needed an ultrasound on the area just to be safe. However he phoned me himself personally after 2 weeks to say that after consultation, they decided I needed a CT scan instead. So of course I maintained a relative air of calm, whilst inside I actually started to get a little scared. I mean, I never had the actual surgeon phone me directly before. In my head that elevated it to something it possibly wasn’t, and in his head he probably thought he was giving really good patient care!
This probably does sound stupid after everything I have been through, but my biggest fear is not knowing stuff. And the issue is, I speak to enough people to know what it could and what it might not mean...
Anyway, the ct scan appointment hadn’t come through by the time I had my first annual review with the breast surgeon. So I asked him if he could check on the system if the appointment was imminent. I then asked him what exactly the scan was for. Quite bluntly he told me they were looking to see if there was any further cancer. He also asked what cancer treatment I was getting currently, to which I replied none. And then he disagreed with me.
The bio phosphate treatment that I get to strengthen my bones is actually a drug for bone cancer too. I actually knew that from previous reading, but I never associated it as cancer treatment for me, because I am getting it due to surgical early menopause. But it is what it is I suppose.
Don’t get me wrong. I actually felt much better about the bluntness of this, as I can get my head around stuff a whole lot faster that way. So I went away and did what I do best, and did proposer forensic-level research about what this would mean for me.
To be honest, I had prepared myself for the worst case scenario, and possibly a terminal diagnosis. (I had actually researched the 15 different things it could have been and what the treatment options were and the prognosis for each. I am not actually morbid, I just like being prepared for any and all eventualities.)
Again... Don’t get me wrong. I don’t want to die. I have too much I want to do, to try, to experience... to live. 🍾💃❤️🤪🎼
But, if I had been given that kind of news, I would have dealt with it, albeit I would have been upset too. My biggest fear was actually how I would tell people. I had already decided that I wasn’t going to tell anyone over the festive period if it had been bad news, and even then I am not sure if I would have told people until I had it sorted in my own head.
I only write this down as I now feel I can. When I got the all clear after lots of phone calls the Friday before Christmas, I literally felt like a weight had been lifted off my shoulders. I didn’t actually realise how stressed out I was about the whole potentially life changing shit I may have to face until I literally got weak legged and cried with sheer relief. (On the Saturday I went out with a very good friend and got drunk and danced lots to celebrate 😀😀😀😀.)
The thing that actually kept me going through the limbo period of waiting for results is that I have many friends in support groups who are currently leading very active lives and have been for several years despite have a stage 4 diagnosis, so actually I have been quite uplifted by their positivity and motivation. 😀❤️
To be honest, I know the stats. I know I have had risk reducing surgery with the double mastectomy and the oophorectomy. But it still is, and will always remain a possibility that cancer may come back. If it does, I will deal with it my own practical, pragmatic way.
In fact, when I am due to see my oncologist next week, one of the things I want to discuss with him is about future risk ratings for me given everything I have been through. He is quite a reserved and quiet gent, I am not sure he likes talking about negative stuff, but I am not sure he has many patients like me... 😜. He may not even know the levels of risk. But knowledge is my power in how I deal with all of this... I will also talk to him about participating in clinical trials. There is a bit where I want to help others, but selfishly now if there is anything else I can do to minimise cancer recurrence then I think the last month has shown me some real fear.
Anyway... it may seem morbid but it’s how I cope. 😀
On a lighter note, I got recalled to my GP following her consultation with oncology. For my menopausal symptoms (let’s refer to ‘dryness’ to save red faces), she gave me the option of short course of pessaries which are apparently launched from toy plastic rocket launchers, or an internal ring which neither she nor her colleague had any experience in. The downside of the ring thing was that she wasn’t sure if she had to fit it in me, or whether I had to do it as a DIY hack and pray for the best...
I should point out at this point I was past caring about the actual symptoms... I was actually only thinking ahead to my next smear test which is due, which would be awfully painful if things remained the way they are... anyway, I stopped the GP in her tracks and said I would go with the medical aids she was most familiar with in case I got stuck... 😳!
She then also changed my pain medication so we will wait and see what relief that brings (she prescribed me another anti inflammatory alongside omeprozole to protect my stomach in the meantime).
Ahhh yes, I should point out that prior to this I had been on really strong co-codamol at that point, but that turns out to upset my bowel to the extent that I thought I was going to have to go to hospital for an enema. Really not pleasant, but thankfully I avoided the enema 😝... but it’s amazing the amount of different laxative tablets and potions you have to take to counteract the effects of co codamol... nasty stuff! One good thing that comes from this is an assurance that I can definitely never be a drug addict to opiates!!!
So all is currently well as I sit here and write this update. I am alive 😀😜.
- Pain is still pretty crappy all over but that’s new normal. Tends to keep me awake groaning like zombie occasionally though. Doesn’t make me a good house guest when visiting others. Unless I am tipsy and then I sleep quite well!
- Menopausal sweats still there at night, keeping me awake and really really thirsty lol. Then I get really bloody cold.
- Fatigue is lessening... but I am a bit boom and bust with being hyperactive... I WILL try be better this year... maybe 😀.
- My hair is growing back on my head at a slow rate and I think I look like a fuzzy toilet brush these days. But I do like dressing up and wearing wigs for going out partying, so that’s all ok 😀. I even think I scrub up quite well with a bit of makeup on these days 💋.
- I am uber grateful for the NHS*.
(Point of clarification / just for info - I am under the care of multiple teams, with each having their own appointment schedule....
- Breast surgeon now once per year for ‘hands on’ physical exam of breasts - this will continue for 10 years.
- Plastics team - go back in 6 months for revision surgery, with post op check ups after each surgery... not sure how many revision surgeries I will need, but will always be spaced 6 months apart.
- Oncology - 6 or 12 monthly check up chats to see how I am reacting to medication for bone strengthening for 3 years.
- Chemo unit - every 6 months to get bone infusion drugs for 3 years
- GP every 2 months for medication and pain management review
- Community nurse every 6 months minimum to get blood tests taken.
... and this is just the planned stuff!!!)
Coming up in the next few weeks is oncology and bone infusions, and hopefully all being well, my planned return to work.
Until then, I plan to do more dog walking, swimming, cycling and maybe a few more nights out for fun... oh, and organise my 40th lol.
Longer term, who knows what might happen. In any and all aspects of my life. I have crazy notions about travel, homes, work, hobbies ... it’s full of exciting possibilities 😀😀😀.
But I am ok with that. Will learn to go with flow and enjoy life. Might just have to do things in a natural sequence and learn to be a little bit more patient with myself. Maybe.... 😀
Till next time peeps.
Go out, make merry and enjoy life.
I am. 🍾💃🎼
Xx
