Boogie Free!

So if you remember my last blog I had just finished my chemo, was feeling pretty good, and was looking forward to getting back to normal. What I didn’t account for is how much the chemo really does affect us, and just how strong this stuff really is. As I write this blog I am about two months post my last chemo, and yesterday one of my finger nails broke off half way down the nail bed. Ouch! Actually no ouch, it didn’t hurt, and now I’ve realised that all my nails have a line about half way up, and above that line they are not attached to my fingers. I’m guessing I could lose a few more, they are dead and turning yellow. Yuk. Very much on the up side though my hair is returning. It’s a least half a centimetre long. I feel blessed. Balance restored, I’ll swap my head scarf for gloves.

Three week after the chemo I had another of those lovely MRIs, not as long as the first one, but just as noisy. And the following week I saw my consultant for the results. This was a little worrying. I had convinced myself that everything was fine it wouldn’t have spread to anywhere else, but somewhere right in the back of my mind a little voice kept shouting out “isn’t this the same feeling you had after the original mammogram when you “knew” there wouldn’t be a problem? That was true, and it made me think that no matter how much I “wanted” to not have bad news, it didn’t necessarily mean I wouldn’t get it. Actually what I got was something I wasn’t expecting at all.

Firstly there seemed to be no further indications of spread. The original tumour was much smaller, and we could go ahead with the operation as planned. Yay. He would make two incisions, (wait a minute, TWO!), yes one under my armpit to remove a couple of lymph nodes. Woah, nobody mentioned any of this to me before!

We all have different amount of lymph nodes, some people have eight, some twelve or more. They do a very important job. They flush toxins and fluids through our lymphatic system to the liver where they are got rid of. They do the same with debris like cells we don’t want, like cancer cells. This is why cancer can often be detected here I believe. But without them we run into problems of fluid retention, and toxins in the body building up. And once they’re gone they’re gone. But I understand we need to know if there is any cancer present because if it’s in my lymphatic system it will be carried all around my body. Also, he promised he would only take two. I agreed to this, but since then have had a letter explained my treatment so far, and in that letter it says the actually took three lymph nodes, so technically he owes me one.

The other incision would be around my nipple. But he would very much try to preserve the nipple for me. Thanks!

Okay so this didn’t sound so bad, a bit scary as I haven’t had an operation before. And quite calmly before I leave “Oh yes one more thing before you go Ali… would you be happy to have it done tomorrow?wow, this was the unexpected bit.

Um. I agreed, get it over and done with. This meant having dye injected into my nipple so that it had time to go up into the lymph nodes so he could find them. That really bloody hurt like a bee sting. I also went along to the day surgery unit to talk to the staff there. I was expected in at 7am the following day. How long would recovery be? – two weeks! (No way, two days tops). This of course is positive thinking at its best, and although within two days I was up and around, I’m still recovering six weeks later, and I did overdo things in that first week, and then suffered for it later. I’ll explain why in a minute.

When I got to the hospital I was told I was last on the list and wouldn’t be going down to theatre until approx 3pm. Lots of time to read and sleep, read and sleep and worry. By the time it started to happen I was a bag of nerves. I think this was because I didn’t really know what would be missing when I woke up. Not like an appendectomy. When I did wake up I wished I hadn’t. The pain was something else, but nothing a little, well actually quite a lot of morphine couldn’t help with! It took me ages to come round. All the other patients had gone home long before. It was late evening when my consultant popped in to see how I was doing. He told me that when he went in and started to cut around my nipple I had begun to come round and had to be given more anaesthetic, that’s why I took so long to wake up. He must have seen the horror in my face, he quickly blurted out: “your nipple is still there!”. PHEW.

So after a few days I could drive again, but it’s taking much longer for the nerves to heal and I’m still getting some pain from this but not loads. I had two days off work as predicted by me. Initially it looked like I had been in a car accident with extensive bruising, but now looks pretty damn good, and I expect I wont be able to notice any scarring at all by next year. My nipple however is completely numb!

So two weeks later I’m back in the Consultants room with my daughter Rhiannon getting results from the biopsies taken during my op. He examines me, all good. Now I can arrange the radiotherapy which is the third part of my cancer journey. We were then ushered towards the door. Hang on a minute, what about the results from the lymph nodes?! He smiled, “oh I forgot to tell you didn’t I!” – a moment of panic, scales right down – “it’s all clear, there was nothing”. It took a moment to sink in. A moment of “you took away my lymph nodes for nothing” this was before I knew he had stolen one too! Then the penny dropped…..

I’M CANCER FREE!

Balance completely restored. I wish this was the end of it but it’s not. Radiotherapy will start in about four weeks and take three weeks. Then I have to start looking seriously at my life style and what I can do to stop this blasted thing happening to me again. I’m already doing some things, supplements and kefir. But that will be my last blog. The nurse came to my house this week to give me my Herceptin injection which I have every three weeks. I will have this 17 times in total. She mentioned I was having my 7th. I can’t believe it is already been that long, about 21 weeks, nearly six months of treatment. How time flies when were are having fun!

I’m writing this last paragraph just one week before the Radiotherapy starts. So I wanted to give you a complete update of my recovery. I had my last Chemo on the 12th January this year, and my Operation was on the 10th February. It is now the 7th April. Of course everyone will be different, but should you be about to embark on a similar journey yourself, It will give you some ideas of what to expect.

So two months after Chemo I can honestly say that I no longer have any symptoms at all. Of course I still have ridiculously short hair and am still wearing a scarf when out and about. I have stopped wearing it in doors. I quite like the short hair, and I have to tell you I look younger (I think). My skin is better that it has ever been. I have not changed weight at all, up or down. I am not ill in any way, except after the Herceptin injections, then there are a few issues for a couple of days, but nothing to write home about at all. The only problem which I have had is lack of energy, and actually I think I was beginning to suffer from this prior to my original diagnosis. My energy levels are definitely raising up again. I have been decorating, running my business, walking the dogs further and gardening again. All getting completely back to normal.

As for my lumpectomy – well both scars are almost invisible to see already. I have complete movement I my arm and no ongoing pain at all. I do however have a hard lump behind my nipple which I am told will take some time to go. I do have the occasional shooting pains in my nipple also which I am told is the nerves repairing. It isn’t unbearable. And my nipple is still completely numb!

I am now awaiting the Radiotherapy which starts next week. 15 sessions over 15 days, Monday to Friday for three weeks. Everyday driving into Cambridge and back. I have some wonderful friends who have volunteered to come with for some of them, and my lovely clients have been very accommodating so that I can work around them. Once done, I will be finished apart from AI tablets (another blog) which I will be on for five years if I can stomach that long!

All in all, so far I don’t feel all that bad. Glad it is coming to an end. Balance is very stable at the moment and life is good.

we are born with two lives, and start living the second one the day we realise we only have one”

how very very true, nearly time to start my second one.

The Balancing Act

After an MRI – please note how casually I said that, MRI. An MRI is a frightening thing, especially if like me you don‘t really know anything about them! Well here is a rundown of what you need to know:-

  • They are not claustrophobic unless you let them be. In fact I didn‘t find it all that small. I was laid face down so couldn‘t see any of the machinery at all. I‘m not sure if this is the same for all MRI scanners
  • They are really uncomfortable. Oh yes, they are built to house a person of one size only and anything else just has to fit into the pre ordained molded shape. So there are bits sticking in where they have no place to be. And you will have to stay in this position for some time.
  • They are very, and I mean very, very noisy. They bang and crash about and even though you are wearing earplugs it still almost hurt your ears. How amazing that in a day and age when we can take pictures of every part of the inside of the human body, we can‘t do it quietly!

And that is it. MRIs done. All there is to know.

So after the MRI I had another visit with my Consultant who we are going to call Mr B. It appears that Boogie is quite small about 1.8cms and does not seem to have spread to anywhere else. Good news! Maybe this is the end of it then, I can have it taken out and go home? Not so. I needed to see the Oncologist. He turned out to be such a nice man, all smiles and jokes whist he lists the treatment plan they have in mind for me:

– TC chemotherapy x 4 three weeks apart

– Herceptin injections (this fights my particular type of tumour) and these injections will continue at home for one year. Every three weeks.

– Then surgery (a lumpectomy they think, not as drastic as a mastectomy) I might lose my nipple (I don‘t think so).

– Then radiotherapy x 20 sessions daily for three weeks

– Then hormones via tablet for 5 years

– Paired with zometa injections for the bones: the hormones will give me brittle bones

Blimey, I don‘t remember when I last took a pain killer! It felt rather overwhelming I can tell you. But what I actually said was, I don‘t want to lose my nipple, but apart from that do what you need to do to make me better.

It was decided that I would have my chemo in Hinchinbrooke as this is closer to home and then have the rest of the treatment at Addenbrookes.

I asked if I was going to die? Eventually, came the reply, but not because of this tumour. This is all I really heard and I went home feeling elated that I was going to live, and petrified I might have to do it whilst missing a nipple.

At home I waited for the letter to arrive with my first chemo appointment.

Feeling pretty balanced, for now.

I am by nature a bit of an organiser. So naturally I started to organise my Cancer. There were decisions to be made. I had just given up my job and become self employed. This was a no brainer, firstly no one would employ me with Cancer and needing time off for treatment so I couldn’t get a job even if I wanted to. Therefore I would remain self employed and would just have to work my way through treatment. I let all my clients know what was happening, and I have to say they became very much part of my support network.

I read as much as I could about Cancer, although I did find some of it very hard to stomach. There is a lot of chat forums out there, and these definitely were not my cup of tea. And as time went on I realised that for me this would be very much a lone journey. I didn’t want to get involved with various support groups that were offered via MacMillan and the Hospital. I would take up a couple of offers towards the end of the treatment. But I couldn’t get my head around this for some time, it wasn’t like me. Eventually towards the end of the treatment, well after the operation in fact I realised that in a way I was burying my head in the sand. If I didn’t spend time with people with Cancer or talk to them over the internet then I didn’t have to face up to the fact that I was one of those people, with Cancer. It was a kind of denial, and it served me well. It enabled me to stay positive because there was nothing wrong with me, and that in turn kept me going and got me through the chemo especially. People tell me often how brave I’ve been, how inspirational. I’m not sure this is true. I was as usual stubborn, they weren’t taking my nipple, and I wasn’t going to die of breast cancer, simple as that, nothing brave about it.

Anyway I digress.

I worked out a budget for the next few months with minimum hours working. All my chemos would be on a Friday so I would not be able to work that day, would have the weekend and the Monday off, returning to work on Tuesday. This would happen every three weeks and in-between I should be able to carry on as normal. This in fact is exactly what happened, with the exception that at Christmas I got a very bad cold and missed a few days work. Sometimes I needed to reschedule things a bit.

I thought about wigs. Checked them out on the internet and eventually decided that I would wear scarves instead. I was horrified to see false eyebrows (stick on). I hadn‘t even thought about my eyebrows and eyelashes. Of course at this point I wasn‘t even sure that I would lose my hair, not everyone does you see, and I had such thick hair that I figured if I lost half it would still look reasonable.

Still keeping positive.

I read that chemo can affect your eyes and can make you prone to cataracts and give you really dry eyes. Well I already have a cataract in one eye and wore contacts which wouldn‘t like dry eyes one bit. Therefore I got fitted for some new glasses and put my contacts away for a few months.

I felt so prepared. The lists of course were much longer than this, and kept going on and on.

At some point I came across Kefir. This is fermented milk and is full of pro-biotics. You can make this stuff at home. Here‘s a link to Healthline‘s website that talks more about exactly what it is and why it‘s so good for you for anyone that has an interest in learning more. It takes a bit of getting used to because it looks like milk, smells like beer and tastes disgusting. But I‘m still on it four months later. It is incredibly good for our gut health and as Chemo kills off your guts and therefore your immune system as well its worth the effort. So I started drinking this two weeks before my chemo. I believe, but of course don‘t really know that this helped me alot through my treatment. I wasn‘t sick once, didn‘t pick up any infections apart from a cold at Christmas (and everyone I know caught that cold).

I also read about fasting and the benefits of this on our systems, for people with cancer and without cancer, as a prevention of cancer. I‘ve linked a couple of useful websites I came across at the end of this blog for anyone who‘s interested in reading more and you really should, you owe it to you.

I am doing the intermittent fasting and have been on and off since the beginning of the treatment. I havn‘t lost any weight, but I havn‘t put any on either which I was expecting to. It is really much easier than you think it is going to be.

I‘m not going to go into too much detail about the chemo itself. It will be different for everyone and will have different effects on everyone. But I will tell you that this scared me, I was frightened by this. This was pumping poison into me that would not come out again until it was ready. I felt out of control and I didn‘t like it. A feeling of no going back. The scales were definately not where they should be. Beforehand I needed a bone scan, and an ECG. I will have more of these to make sure the chemo isn‘t doing more harm than good. The actual intravenous bit where the chemicals go into you was nothing at all. Couldn‘t feel anything, didn‘t hurt or cause any major problems. I was given a whole carry bag of medications when I left to go home though which horrified me. I hadn‘t thought about having to take medications! I don‘t take asprin! But there were quite a few. Steriods to stop me feeling sick, tablets for constipation, mouth wash to numb my mouth when it got sore. Antibiotics to start the following week when my immune system was knocked out and I would pick any infection going, more steroids to start just before my next chemo in three weeks. But the worse by far was the five ready loaded injections I needed to put into my stomach every morning for five days!!!! I can‘t do that. This caused me great concern and kept me awake most of the night.

The scales were right down now, I was miserable.

Then in came the thought – I could hear the nurse saying it – the mouthwash will numb your mouth. Okay then surely it will numb the skin on my stomach as well before I need to stick a needle in it. [Of course, I‘m not advising anyone else to do this, the nurses were pretty horrified when they found out, but admired my ingenuity.]

Balance resumed.

Each subsequent Chemo was slightly different. I got used to the side effects which for me were very few. I wasn‘t sick once. I did feel tired and needed to have a rest during the afternoons, and this got more pronounced as the chemo went on. I had terrible constipation once and did have very painful bones due to the injections which make the bone marrow make more white blood cells to counteract the effects of the chemo. Once I found out I could take pain relief this was sorted. Oh yes I did suffer from nose bleeds a couple of times. Other than that it was okay really just a pain in the backside.

Oh yes I nearly forgot to mention it, two weeks after my first chemo, all my hair fell out.

Down go the scales again.

When I say hair I mean all of it, my legs, privates, armpits, nasal (this causes major problems, especially when you have a cold), ears, fine face hair, head of course. I was a smooth as can be. I kept my eyelashes, well some of them, and I didn‘t lose my eyebrows until after my chemo had finished. I did have a very light fuzz on my head, but I still looked very odd every time I caught sight of me in the mirror, you know what its like when you have a hair cut! But I have had the smoothest legs ever and the skin on my face has never looked so good. Not much of pay off, but better than nothing, and up the scales go a little. Wearing the scarves has become normal for me and I am excited by what sort of hair I will get when it starts growing again in a couple of weeks. (I am writing this post chemo). The worse part of all of this is the actual losing of the hair. It comes out in handfuls, gets in your mouth, all over your bed and house. I had mine cut short but it still got on my nerves, actually I was quite glad when it had all fallen out which took about four days. After Chemo I was awaiting another MRI to see what had happened to Boogie, and then be booked in for the surgery.

In the meantime people constantly pin pointed me to articles of cancer cures, or alternative remedies for cancers. I have checked out soda, cannabis, cucumin and many many more. All worth a read but we will talk about them later in another blog. One friend sent me a link to a website called Cancer Active and said a friend she worked with who has had cancer recommended it. I ignored it of course. Well I did for some time anyhow but when I was ill at Christmas I did read it and this changed everything I thought I knew about Cancer and it transformed my life a little. I stopped denying to myself that I was ill and took ownership of my cancer and the probable reason I had it in the first place. I took a long look in the mirror for the first time ever in my life and wasn’t sure I was very pleased with what I saw.

I had another shift, and the scales shuddered a bit.

Links about intermittent fasting:

https://fitness.mercola.com/sites/fitness/…/07/…/intermittent-fasting-cancer-treatment.asp..

https://www.healthline.com/nutrition/10-health-benefits-of-intermittent-fasting

Thoughts from the Middle of the Night

I’ve just realised that life is terminal. Three weeks ago my life was absolutely balanced, or so I thought. A dodgy mammogram was quickly followed by another, then an ultra sound then a biopsy and 2 weeks ago an MRI. Later on today (it is now 4am), I’m going to get given all the results and a complete diagnosis. I already have some, so for example I already know I have a tumour called a Hers2+ tumour in my right breast somewhere just underneath my nipple. I was told I should give this tumour a name – I’m unclear as to why, but it’s definitely not getting any sort of name that I might give a new dog, so I’m going to call it “boogie” as in the boogie man.

So I woke up wide awake at 4am with the overwhelming realisation that tomorrow I might be told that I’m terminally ill! – and what does that actually mean to me? What do I actually really feel about life and death. None of these feeling have been helped by me looking up Hers 2 positive on Google yesterday and discovering that only a handful of years ago this would very likely have bee a terminal diagnosis. Something else I read yesterday is that a growing body of specialists now believe that some of us have cells in our bodies, just single one off cells sitting quietly, patiently waiting, that if triggered will start to grow and become what we call cancer – a Boogie.

So all these thoughts have been gently wondering around my mind for the past hour, in the dark, in bed alone with the dog snoring next to me on the floor oblivious to the impending doom I’m facing. Oh those 4am voices in our heads how they haunt us. I have so many questions – who is going to pay the mortgage? How will my children manage without me? Will it hurt? How long will I have? Will I arrange my own funeral now? Etc etc

But suddenly through this perilous thought pattern, breaks through a thought like a shining knight in armour, one of my mantras that I love “out of a bad thing, a good thing always comes”. I do actually believe that this is true even if we can’t see it straight away. As soon as this thought is in my mind I feel better, calmer, and I begin to think about everything, and I mean everything. Life, death, giving birth, the planet – our planet, time space and as these thoughts mingle around my mind a pattern starts to form. So I realise that my life, and probably everyone else’s lives I guess are like a set of balancing scales. We have good and bad things happen all the time, and as long as the scales more or less sit in the middle, we feel okay in life. So thinking about my mantra then, this must mean that every time a bad thing happens and the scales dip downwards towards the bad side, something will be popped on the good side at the same time which will eventually or sometimes immediately balance things up again.

If all that is true then a couple of years ago something really good must have been popped on my scales. And it was. I was made redundant and went through a period of total stress (also considered an invitation for Boogie), I saw a Hypnotherapist got loads better and was able to cope again, all the stress left my life and I decided that my pathway was in helping others in the same way, so I began my training as a Solution Focused Hypnotherapist. Great. But of course this left the scales in my life out of balance again. Nothing lasts, not even the good things. I had never been so happy in years and it would have been around this time that Boogie decided to start to grow.

However sitting here writing this I feel remarkably calm. How so? The answer I guess is very simple. It’s because I am a Solution focused Therapist and thus I truly understand the following:-

– These scales I’ve been talking about during my 4am ramblings, well you have them too, in your head. I don’t just mean you imagine them, no I mean this.

– If your life is made up of your thoughts and how you perceive the world around you day by day, then you can see that you have good thoughts and bad thoughts. If you therefore kept a set of “thought scales” in your head it would be good to keep it balanced – not too much stress so that it keeps you awake at night and not too much excitement or pleasure because that will keep you awake too worrying about losing it again.

All the Clients I see now are with me because their thought process is out of balance and they need help getting it back in the middle again.

If you allow bad thoughts in your head, your scales will start to dip and if they get too low, it is going to take some considerable effort (or a Therapist) to get them moving up again. So just make sure you always keep good thoughts in there to balance it out. Every time you think something dark – think something light, rebalance your mind. It is as easy as that.

So with this is mind – how do I now feel about my hospital visit tomorrow? Well the worse thing they can say is that my Boogie is terminal and they will give me an approximate “sell by date”. But do you know what, they (my Doctors) can’t predict the future any more than you or I. They might say I’m going to croak it in April and in fact I’m going to get hit and killed by the Hospitality bus at Addenbrookes tomorrow on the way back to the car park. Who knows? Not me that’s for sure?

None of us really knows the future, the only thing that is absolutely certain is this – Life is terminal. If the bus or the Boogie doesn’t get me, well old age definitely will. I don’t intend on wasting precious time worrying about any of it. I’d rather spend my remaining time, however long that may be, helping other people balancing their scales.

In my next blog I’ll tell you what the results were, and how they set me off on a course of action which was to change my world in many many ways.

The Inconvenient Cancer

Please note that whilst all of the coming posts have been written during my treatment, not all of them will be posted at the time of writing. This is simply because I have been incredibly busy running a business as well as going through my treatment, and for a while I wasn’t sure whether I wanted to publish my thoughts about all of this. But, having thought about it for some time, I’ve decided to add it to my blog in the hope that it can provide some support and advice for people suffering from cancer, and show how what I’ve learnt as a therapist has helped me get through this.

During the coming weeks, and months, I hope to provide you with a valuable insight in to what suffering from something like cancer is like, what to expect with the treatment, and how a prognosis of cancer doesn’t always mean your life is changing for the worse, and most importantly how what I’ve learnt through my training as a Solution-Focused Therapist has helped me, and how it may be able to help others. I will also include any resources I found useful in my mission to learn more about a subject which everyone’s heard of, but not many of us really know much about.

How it all started :-

In 2017 I had a mammogram. I nearly didn’t go, because I had a dentist appointment on the same day and, well, no one likes getting prodded and pulled twice in a day. However, I decided to do the mammogram instead, cancelling the Dentist. I very nearly made the opposite choice. Off I went to Tesco’s car park to the big white van, not really thinking much of it. I felt well in myself and I was too happy to seriously consider that there could be something wrong with me. I remember joking with the assistants in there whilst they examined me.

I thought nothing else of it until about two weeks later I received a letter from my local hospital, Addenbrookes, telling me that there had been an “inconsistency” on the mammogram and could I return to the breast clinic to have another one. Totally inconvenient, but off I went to the breast clinic. I had the second mammogram and sat for a while in the waiting area before being bought back into another room where I was told that there was still an “inconsistency” and they wanted to do a quick CT scan to have a look.

At this point I still thought nothing of it at all. However, as soon as they put the CT scanner on me up it popped on the screen. “there” said the Radiologist pointing to a small darker area on the screen. “that is not normal”. “What is it?” I asked craning my neck to see if there were any other dark areas, “is it a cyst?”. “No I don’t think so” she said as she continued to move the scanner around also looking for any other signs of darker patches. “I have been working here for many years and I’m the head Radiologist in this department. Of course you will need to have further checks, but in my opinion we are looking at a small tumour”. “Oh” and I felt my life shift a little.

This is my story.