Well I know I only seem to update this once a year but I had a feeling while walking home on Thursday that I should write an extra update. Nothing bad, all good in case you were wondering.
So. My last post was in July, what has happened since. I participated in a 26 mile extreme coastal walk for Macmillan (I didn’t quite complete it but I managed 17miles and I was only 18months on from active treatment) and raised £350. I changed jobs. Kind of accidentally but I felt it was time to move away from the Stock Control and Store work and I am now a Transport Compliance Manager!
I have had to relinquish my HGV licence temporarily as I have now been officially diagnosed with Chemotherapy induced Peripheral Neuropathy. This is a numb, sometimes tingling sensation in the peripheries ie hands and feet. While I already suffered from this slightly in my left foot after my back surgery in 2009 it has got significantly worse over the last year. The DVLA have me on a yearly review for the HGV licence and a three year review for my at Licence.
I have been dubbed a crazy cat lady even though we only have one cat. I thought a stipulation of the title was you had hundreds?? But I must admit my little Kim is a very big part of my life and she comes first.
Oh. I joined slimming world with my Mum (can’t remember if I said they have moved back to Blighty from Cyprus) and I have lost 2 and a half stone!! Well I had done before Christmas anyway! A fair way to go yet but it will come.
Christmas has come and gone and with it this time of year brings the annual scans and checkup. Always a tense time for me as I always think I am handling it well but even just the thought of it coming up fills me with dread. It is like going to sit an exam that determines whether the rest of your life will continue and you forgot to revise. My hospital has decided to ditch the annual check up with the surgeons but I still have an annual chat with my oncologist (that’s in August) and the all important mammogram in December. Well I can report that everything is normal! Phew! I also have been DEXA scanned which checks bits of your skeleton for osteoporosis. Because the chemotherapy stopped my girly bits from working for a year they are concerned my bones lost the protection of the good hormones for too long. So hopefully getting the results from that next week. It’s nothing bad, but may involve Vitamin D injections and maybe a tablet.
The early hours of Thursday morning saw me become a Great Aunty for the third time. Mother and Baby Alistar are doing well.
So now come the point of this post. I have pledged this year to walk 1000 miles. So from the 1st January to 31st December I need to walk on average 2.75miles per day. Sounds easy doesn’t it……
Well while I was walking home on Thursday I got to thinking that maybe I should write down some of my random thoughts that I have while walking and I thought I could add them to this blog. Or should I start another one?? Whichever I decide you will be hearing more from me over the coming months I hope and not just every year in July!!
Well this seems to be a theme. I get a bit nostalgic this time of year now. What a strange thing you may think but 2 years ago mine and Colin’s lives were rocked to the core. It is difficult not to think back. There we were celebrating my 40th birthday year and everything seemed blissful until that fateful morning in the shower when I felt a lump in my boob.
My heart still sinks when I think of that moment.
No it cant be, check again my head says. Heart says you know what it is. Head says its just hormones, your age. Heart says you know, come on admit it.
Even after the visit to the doctor, twice, just to be sure, then the hospital visit with the uh oh that doesn’t feel good from the specialist the head said its just a cyst but the heart knew. Not just hope but I really knew what the answer from the biopsy would be.
Its strange to think back. I have lost a colleague recently who confided in me that he knew too. But I left it too late he said. I was too scared.
I remember that feeling but I also knew deep down that it would be ok. Not long term OK because that you will never know but that I would come out the other side. There was never a doubt in my mind.
Cancer is still in my mind most days but it just sits at the back of my brain and rears its head at the most weird times. The afternoon when I was told my colleague had passed away, we knew it was imminent but it was like a gunshot to the chest. I sobbed. Evening when Colin has gone out I sometimes sit and marvel about what it would be like here if I hadnt made it.
Every niggle, ache and pain it is in the back of your mind. I have asked a fellow survivor when the fear gets less and the answer was it doesnt. It is with you forever. It doesnt strike so often but it is always there.
Now I have rambled on about stuff I am not sure how to end this annual catchup apart from to say…..
SEE YOU NEXT YEAR!!!!!
Wow, where has the last year gone?? Yesterday this time last year we had our lives shaken to the core and this awful ‘journey’ was just starting.
Today we are sat listening to the WHO on Sky after a very pleasant barbecue. I have been on a 10km walk today and although I ache life is good…..
there have been a few hiccups over the last few months. I now have to take Ramipril to help my heart as the three weekly herceptin is reducing my ejection fraction. I now have confirmed lymphedema in my right arm and naughty boob. I have to wear a compression sleeve and glove daily plus a compression bra most days.
My heart will get better once the herceptin stops but the swollen arm and boob is something I will have to live with. Better that than what could have happened.
So now it is a year of anniversaries. A year since my diagnosis, first chemo, last chemo, surgery etc etc. We have lost friends and family members over the last year. Some of us get a second chance some do not. I am sad every time I read of another cancer related death and a cure cannot come too soon.
So I raise my glass to everyone currently NED, all the people still having treatment and shed a tear for those no longer with us.
It’s the little things that still get me!!
Today I’ve used my hair straighteners for the first time in 11 months
Having a bit of a moment and saw this and it makes complete sense
well, what can I say. A Cancer diagnosis at any age in life is heartbreaking. It devastates your life, the lives of the people closest to you and has repercussions that you would never think of.
I have only got 7 more Herceptin injections to go and I will be done with active cancer treatment. Blimey. Last year I can honestly say I wasn’t sure if I would get to this point. Not only in a physical way but mentally as well. I am one of the much discussed ‘strong’ cancer fighters. A positive attitude. Grab the disease by the horns, kick cancers ass types. But really, down deep it was just denial. Still is.
I still wake up and wonder what the hell happened, why me. Why anybody? It’s just a life lottery as it is whether it comes back or not. Will my body attempt to snuff me out again? Probably but we can never say for sure. I saw a good quote last night, Don’t borrow sorrow from tomorrow. It may never happen so why waste your precious time worrying about it.
We get dark days as so does everyone. It’s just that a cancer suffers dark days are to do with mortality and pain. Not just your own pain but of your loved ones.
I have learnt recently that my family kept a few things from me last year and that was hard to accept.To me I was only ill and I could have coped with anything but to them it was the best plan to try and help me. At times the only way to shield me from other shitty things going on.
BUT I am healthy albeit overweight. I know I need to lose weight and to give me the best chance of a long life I need to get rid of the excess weight but now there is another side of me (little devil) that says f*** it, live for now. If I want chocolate have the chocolates!!
On a lighter note (goodness knows where all that came from 😁) I’ve just returned from holiday!!I am no longer the colour of skimmed milk! You know the look, a pasty British blue white colour of skin that looks ill all year round. I have a tan, tan lines and I feel great. Tired but great.
I saw my oncologist yesterday and voiced a concern about a migraine I get after herceptin administration. Although rare it is a side effect. Ho hum, another one. Aches, pains and now migraines. She signed me as fit for another 3 months so I get to live a normal life again for a while.
I thought I would feel amazing today and trip out of the radiotherapy department with a huge smile on my face after hugs and photos but no. It’s pretty much like after getting my results of the surgery just before Christmas. Pretty flat really.
I have twinges, I am tired and irritable, a bit car sick after my journey today and I want to eat a horse. But there are no hurrahs. WHY NOT???? What is wrong with me.
I have had the lecture from the Macmillan nurses about feeling scared that my cancer might come back or feelings of abandonment after the many months of endless appointments and “attention” from the medical teams but I’m not really feeling any of that either. I should expect to be sore and fatigued for some months to come (or years apparently ) as well. I have another eleven Herceptin injections to go. Maybe I will feel the joy after they have finished or it may be yet another anticlimax.
Dont get me wrong, I am not sad or depressed, in fact my mood and general wellbeing is better than it has been in months. Colin and I seem to be getting on well and things seem hunky dorey in every other department so why aren’t I skipping and doing the happy dance??
I was told yesterday that I am now considered disease free (oh doesn’t that have a ring about it 😬) Remission isn’t considered until the 5 year mark but at this point I have the same probability of having cancer again as the next person in the street.
I will update this blog as and when more news comes along but I am keeping my fingers crossed that these updates will be few and far between as I embark upon my new disease free life!!
Thankyou all for following, reading and your comments of support throughout my treatment!
I was reliably informed by the radiotherapy guru this lunchtime, nearly there.
A third of the way there.
Now is it just me or would other ladies find it difficult to make small talk while stood in the corner of a huge cold room with enormous radiation emitting equipment in it, no clothes on from the waist up with your boobies swinging in the wind?? Especially when the two main radiographers are blokes only just out of college?? Well, they are probably more like 30 but when you are 41 with sport related droopage it is a bit embarrasing!
I am not body conscious particularly, that gets beaten out of you after doing cross country at school and sharing showers after playing rugby but some of the women are adamant they will not let a male radiographer into the room. I am sure they have seen it all before!
The whole radiotherapy thing is beginning to get the better of me. Up at 5.30 to do my hair (oh yes I’ve got hair to do!!) and at work for 6am. Work until 11.10am and then my transport arrives to take me to Taunton. The last couple of days the machines have been running behind as one of them threw a wobbly on Monday so they are now down to two so there have been delays. Sat in a warm waiting room I get ever so sleepy and the a quick blast of radiation then I am on my way again. Another hour and a bit in a warm car and I am home. By the time Colin gets in at 3pm I have been asleep on the sofa. He is being a love today and cooking tea!! Thank goodness I have a week off next week and I can have some lie ins!
Well, I am on the home stretch now, fingers crossed. My two experiences of the radiotherapy system at Musgrove Park Hospital in Taunton have been amazing. On my first visit yesterday I was greeted in the reception area and taken through and the whole process was explained again as well as the side effects to expect. Today my appointment was at 12.50, I walked through the doors at 12.40 and barely got my bum into a seat in the waiting room. And I was called through to the changing rooms. These are two way things that you go in on the waiting room side and lock the door. Then you take your top half off and when they are ready they knock the door on the treatment side and off you go.
I had to have my bingo wing tapped out of the way today (shameful) as it was in the way of the ‘beam’. Numbers and positions are checked and double checked and you are left alone in a huge room with the gert machine. Relax they say. Boobies are hanging out, the air conditioning makes you shiver and radioactive isotopes are whizzing towards your skin. Whistles and bangs let you know the machine is working. They take X-rays before they start to make sure they are not nuking my lungs and ribs too much and yesterday I had sticky pads on me to make sure the right amount of juice was getting through.
I was quite tired yesterday when I got home. A 6am start for work then an hours journey to the hospital, an hour in the unit and an hours drive home. I am not doing the driving but being a passenger is very sleepy making! My ribs have become quite bruised. They have assured me it is not the current treatment yet but seems as though the cords that are making my arm poorly have also gone in the other direction too as the pain gets worse when you push the cords in your armpit. I am seeing the nurse again in a few weeks so will ask!!
So I am 2/15 today. It seems a long way to go and I am sure the team at the hospital will know my chest like the back of their hands when I am done on the 8th March.
My hair is coming on a treat. By the time the radiotherapy is over I will defiantly have forgone the hats. Think I may rock the pixie look. And it will be uber pixie!
There are many in life, defining moments that is. When I was younger I felt my wedding day was one of them. Years later my divorce became one. Now however it isn’t the life changing things that make defining moments. Well I suppose being diagnosed with cancer was a pretty big life altering defining moment but I’m on about now, the aftermath of the diagnosis, chemical treatments and surgery.
Sounds small but last week I had my first haircut in six months (a trim, a very small trim but a haircut nonetheless!) Today I plucked my eyebrows and thought about shaving my legs. Didn’t quite decide to do the legs though, can’t bring myself to!! I had to use a hairdryer to dry my hair ( didn’t have to as its still so short it’ll towel dry easily) Wearing mascara again. Though my eyelashes are short and most of it ends up on my eyelids!
There have also been a few work moments too. I have my mojo back. I am finding I am able to multitask again whereas even just a few weeks ago I struggled to type and talk at the same time. That said I am having a few blank head moments too!! Walked out of the office yesterday with my new boss and completely forgot what I was going to do and where we were going!
Monday morning this week at work I had just finished my rounds and as I took my gloves off I noticed the swelling in my hand that had been gradually increasing over the last week or so had ballooned right up. The whole of the back of my hand seemed to wobble and I could no longer see the web piece of skin between my thumb and fingers. The breast nurses agreed they should have a look and Wednesday of I trotted to the hospital. It seems it is just the lymph system struggling to ‘reboot’ Because they took the sentinel lymph node the lymphatic fluid does not know where to go so it disperses into the muscles and gravity moves it to the lowest point!
I now have a very sexy skin colour compression sleeve and glove. ➡️
Radiotherapy starts next Wednesday so I will write again soon!