2018, NEAD, MBE and 40

January 2018

I continued to get my chemo from January, however also started Oxygen Therapy which for any of you who are unfamiliar is a treatment with is used for people with MS and also used for Divers who get the bends. It is a chamber you sit in fully clothed with an oxygen mask on. The chamber is then decompressed to 8ft below sea level apart from having the oxygen mask on which those who are claustrophobic would struggle with I found the experience relaxing as I would read my book for an hour twice a week when I went for my appointments. I have no scientific evidence however after having 18 blood transfusions in the previous 5 months all I can say is i did not need another transfusion until after my 8th and final cycle of chemo.

At the end of March I had a scan and was told the most amazing fabulous news any cancer patient can hear that I was NEAD, which stands for No Evidence of Active Disease!!! Imagine after everything I had gone through in the past few years and being certain I wouldn’t see my $0th birthday I was now closer than ever of achieving this milestone. To say I was ecstatic is an understatement!!!

So the plans were put in motion to enjoy the next few months off not being on chemo and making the most of every moment. NEAD is the term given by Oncologists when they can not see any disease on the scans. There is no guarantee that there is no disease in the body as tiny cells not visible to the naked eye on scans could be circulating in the lymphatic system or blood stream or there could be tiny cells already forming into a tumour which again is not visible, that is why they say Stage 4 cancer patients are not cured because they cannot guarantee there isn’t cancer in the body. So the best us Stage 4 patients can wish for is to be told there is NEAD.

First plans were to go on my cousins 50th birthday weekend to Spain – Done

Next a weekend in Spain with my cousin and friend for a Healing retreat in the Marbella Hills. What an amazing weekend we had with Holistic Therapists and guest speakers from all over the world it was amazing and had been organised by a guy called Mark Barjeski who owns the The Healing Academy in Marbella.

This guy had recently published a book and very kindly put on the 2 day Healing Retreat free. It was amazing to listen to his talk about how he got involved in Holistic Therapy’s. I have become really interested in Alternative treatments, mindfulness, meditation and Angel Therapy.

One of the biggest things I have become attuned to is “Negative Energy”. I will honestly admit that 4 years ago if someone had talked to me about this I would have thought they were away with the fairies. But when you are faced with the events which I have had then you reevaluate things and what and who is important in your life.

Have you ever heard the reference to an Energy Vampire? Well next time you are in someone’s company and afterwards you feel completely zonked! You have been zapped by an energy vampire. We all know that person the one who cant see the wood for the trees, sees the glass always half empty. The person who says oh you could never do that, or how are you meant too to do that? its impossible. Well then you know an energy vampire. This could be personally or in a work place or Social occasion. They will suck the life out of you with their negative, draining persona! Advice put a few lemons around the house or office if they go mouldy there is too much negative energy in the environment. If they go hard then good, good good you have good positive energy around you.

In your home or office have lots of plants, aloe Vera are good. Place a salt lamp on your desk or in your living room, burn sage incenses sticks clear the negative energy from your space and you will feel better. It might all be in my head the so called placebo effect, but who cares if it works and gives me a feel good factor then it is worth it.

I laugh with my friends now as I think they believe I’m some sort of middle aged witch with all my hocus pocus remedies but sure life’s too short to worry about that! Lol!!

So after my Healing Retreat in Spain I had a weekend in Spain at my friends house with my husband with the sole purpose of our trip to book my birthday party which I had decided 2 years previously that if God spared me and I was still alive for my 40th I wanted to have it at a beautiful restaurant on the Costa del Sol coast. The restaurant was a beautiful traditional Spanish family run business which looked out to the Med and had a private beach. It really was Idylic and what I wished for so much.

So with that trip a success and a booking made for my family to go to Spain to celebrate my birthday I put it out to whoever would like to join me on the night. In the end there were 35 friends and family at the restaurant that night and it was one of the best nights of my life with all the people there I wished for, it was amazing!

Nest trip was a few days in the Cote de Azure hills at my cousins beautiful B&B which is completely what you imagine of typical French Villages with mediaeval castles, beautiful scenery and gorgeous food and wine so again another fantastic weekend which I enjoyed with my husband.

Apart from all they short breaks I had since being off chemo I opened the post one day to find a very official looking envelope which initially gives you that dreaded feeling in the pit of your stomach that you have done something wrong. When I opened it I was pleasantly shocked to find I had been nominated to receive an MBE in the Queens Birthday Honours list in June. Whao!!! Is all I could say, It was all very official and in the letter it explained that I was not allowed to tell anyone (excluding my immediate family) as the official list was published by The Gazette and UK Newspapers the eve of the Birthday Honours list being published. OH NO how was I going to keep this secret as I was really wanting to know who had nominated me for this very honourable award which was for my services raising funds and awareness of Inflammatory Breast Cancer. I just could not take it in I was completely humbled by the gesture and then to be accepted by the Queen to accept this awards was unbelievable.

So swearing my husband, kids and parents to absolute secret we had a month to keep this to ourselves, however I set about organising a Garden Party for family and friends with a cover story that I was celebrating being off chemo and just had another clear scan.

So 2018 really was starting out a a great year as I was NEAD, got an MBE and I was going to see my 40th birthday!!

Next chapter = new oncologist, new hospital, a tough time but another Christmas to enjoy.

July 2017

All I can advise anyone going through a cancer journey is don’t be afraid to change Oncologists, hospitals, Trusts or even countries if you feel you are not getting the best treatment for you! As the Professor I seen in the Royal Marsden said 9 times out of 10 the standard treatment works however there’s always that 1 in 10 it doesn’t work for and that’s when Drs have to step outside the box. If you Find yourself in the position like me With a Dr not prepared to do that for you then you need to say thank you for everything you have done for me but I need to go elsewhere.

That’s the situation I found myself in and in July 2017 I asked my GP to refer me for another second opinion in another Trust. I knew from recent research conducted on BRCA Breast Cancer that there was a new kid on the block which had shown positive results in comparison to standard chemotherapy in a trial for women with BRCA mutated Breast Cancer. As my oncologist had point blank refused to go down the Individual Funding Request (IFR) route which is a request to use a new drug which had not yet been approved by NICE* (the Government body who approve medicine to be prescribed by the NHS), under exceptional circumstances

*National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care

So that was the breaking point of our Doctor Patient relationship. How could I trust my Oncologist was doing everything within his power to help me if he refused to do this for me. This was the the straw that broke the camels back. Two years of going through what I had and every step of the way I had to fight for what was best for “me”! Thinking back I now realise if I hadn’t asked and fought for everything I know I would not be here to tell the tale, which makes me sad for all the women who could have been in that 1/10 category but didn’t know, have the strength or courage to ask as I’m most certain they are no longer with us.

Having made the decision I was moving hospitals and Oncologists I got my GP to write a referral letter and sent it to an Oncologist I had been recommended in another Trust.

Within a few days I received a phone call from his secretary to offer me an appointment a few days later.

So the day arrived to meet potentially my new Oncologist. When I was called in to see him I was nervous so I just got straight to the point with him and said “I know this appointment is to get your opinion on my treatment plan, However I feel I have come to the end of the road with my Oncologist who I am grateful for what he has done but just feel I need to get a new perspective on my treatment.” Immediately he put me at ease and said I was within my right to ask for a new Oncologist he said “you may even come to the end of the road with me too in the future but I will not hold any grudge”.

He confirmed what we already knew that the lump was cancer and it was in the lymph nodes in my neck and around my collarbone.

I told him I had researched the new drug called a Parp Inhibitor which although had not been approved by NICE to be given to women with breast cancer it had recently been published in a recent trial and had shown very positive results for women with BRCA breast cancer. I informed him that I had made contact with the company who manufactures the drug and they were prepared to supply it to me under compassionate grounds. (Many people do not know this however many drugs company’s will give a drug which has been trialed and has proven to work and May already be prescribed in other countries, however is not yet licenced and approved by NICE. This means the drug is free the only cost to the NHS is the prescribing and administrating of it!!!!

The other case when drugs are offered on compassionate grounds and was the case for me is when a drug has been trialed and licenced for the treatment of one cancer, this instance Ovarian Cancer however could benefit another type of cancer in my case breast cancer. Obviously we know this is a marketing ploy by the pharmaceutical company’s to get the NHS to buy the drug, but seriously it’s free there’s not much the NHS get for free, so why not take advantage of these compassionate grants.

A No brainer I hear you say …. but no no no not that simple in the UK although I’m sure you are not surprised by that.

All the hoops to be jumped through the ts to be crossed and i’s to be dotted means that consultants are very reluctant to go down this route. I suppose with the claim culture the UK has become their Risk Assessors are very much against this option . However I believe it should be the patients choice and if they know there are risks involved and sign a declaration which they do for any given treatment then there cannot be any come back from the patient or their family.

At the end of the day the people considering going down this route are the ones who have had all available treatments and now have no options left, so they might as well give it one last shot of something whether it is licensed by NICE or not.

Well my new Oncologist agreed that he would consider going down this route for me however it would take time to get the correct process in place and in the meantime he wanted to start me immediately on Carboplatin!!

Huh really? I asked him “just like that” I told him I had been asking for Carboplatin since being at the Royal Marsden but had been refused it. He told me that because I was BRCA and Triple Negative that it made sense to try it.

So I was booked in to start chemo for the following week. So I left the hospital that day a very happy person and a lot more confident that I had felt in a long time. It was like a weight had been lifted off my shoulders that I could concentrate on me and not spend every minute of the day researching the best treatment for myself.

The next 8 months of my life seem to be a blur to me now as Carboplatin was one tough cookie!! I think I had every side effect associated with it. I was now attending a new chemo clinic so had to get used to their regime and the surroundings.

Within a day of having chemo I had nausea which went on for days, this then lead to constipation, which prolonged the nausea making me dehydrated. So a week later I was admitted for a few days stay in hospital.

Round 2 was slightly better as they equipped me with lots of anti sickness tablets and dulculax, however I ended up back in hospital being Neutropenic which for any of you that is asking yourself what that is its when your white blood cells go below a safe level and you are at high risk of infection. So I spent 5 days in a side ward sleeping my days away as the fatigue I had was not normal.

On my third cycle I was offered a syringe driver with anti sickness meds in it which would deliver a steady supply to me and hopefully help with my sickness. It was arranged that the District Nurses would come out to me every day to change the meds. Thankfully this did give me some relief so it was agreed that I would get this prescribed every 3 weeks.

What I haven’t mentioned is that at the start of 2017 I had decided I was going to continue my fundraising however this time I wanted to raise money for the BRCA Research at the local University so having met the Dr at the lab who gave me a tour I decided I would organise a Black Tie Ball at a local tourist attraction which had a beautiful events room.

My very good friend offered to help me as well as a friend I had met in the Regions BRCA support group. So as a Project Manager in my past life I started putting my skills back to use and commenced the mammoth task of organising the Event. First I chose the Venue and set up a Facebook page. I contacted local businesses and asked friends family and ex-colleagues if they wanted to buy a ticket. As the tickets were going to be £100 per head I knew it was very expensive so wanted to give people ample time to decide if they wanted to go.

The planning took 9 months as the date was set for 13th October 2017. As you will have read in my previous blogs I had a few other things going on at this time too but I managed to do it. The night arrived We had managed to sell 33 tables at £1000 per table. The raffle and auction prizes and photographs taken on the night and donations made from people who could not make the Ball managed to raise £38,000.

I had my chemo 2 days before the event so I had my dress and wig on, I got my make up done and my syringe driver was in a wee clutch bag so was ready for the night!!

All I can say was it was fantastic everybody had a ball the food was fab, the music was brilliant, the blues band had donated their time for free I managed a speech I had a few other guest speakers and the compère was great craic. Everybody had a fantastic night and I was getting messages from guests for days afterwards saying what an amazing night they had. I think I managed to sleep for 2 days afterwards I was absolutely shattered but i was so pleased it went well.

I had a scan in October which showed the chemo was working!! my tumours were shrinking. It was great news and therefore made all the sickness and hospital stays worthwhile so my Oncologist decided I would have another 5 cycles of it.

The chemo cycles went on, however I started to need blood transfusions. I knew when I needed it as I got so tired and breathless I couldn’t climb the stairs without needing to sit at the top to catch my breath it was so debilitating. I had no energy and spent days and days lying in bed or on the sofa any small task left me exhausted.

One afternoon in early December I started to get pains in my legs. A few hours later I was shivering so thought I was taking the flu. A few hours later I was lying with blankets around me beside the fire. So I rang the chemo line which is a 24 hr line people in chemo can ring to speak to medical staff who then would often tell you to come straight to the ward which I was told to do. As my husband had my kids at football I rang my cousin who drove me immediately to the hospital.

After examinations xrays and blood tests which I barely remember as I was extremely ill at this stage had fainted and was shaking like mad. I was admitted to the ward, I had a bad night that night the pain, the fever, the horrors, drs in and out to me getting more blood. It was the next day I learned I had Sepsis which is a serious complication of an infection and can lead to organ failure. Thankfully I was given numerous IV antibiotics but told I would be in hospital for 2 weeks.

Over the next few days I really improved but would need IV antibiotics 3 times a day for 2 weeks. I had a Hickman line inserted into my chest due to collapsed veins which I had inserted for chemo in August it’s an IV line which is inserted into the central artery but a second line hangs from the chest. They had discovered that This was the source of my infection so I was taken to theatre to get this removed. I hated it anyway this had been my 3rd Hickman line inserted over the 2.5 years and I had got infections in the previous two although it wasn’t Sepsis. With this now gone I had no access to my veins. Believe me my arms and feet were black and blue as I had nurses, doctors, blood specialist and anaesthetists hoking at my arms trying to get cannulas inserted. Unfortunately I had to go through this every few days as my veins rejected the cannulas they did get in every few days.

There’s only so much hospital food you can take and when I’d got my appetite back the thought of the food made me nausea so thank fully my lovely friends and family brought me some home cooked food in. As I was feeling much better by the second week I was allowed to escape for a few hours between my IV antibiotics so I was able to get to my sons last carol service in Primary school and get out for a few hours to see my granny on her 90th birthday.

D day finally arrived and I was able to get home for Christmas. My Oncologist had agreed that I could get a break from chemo until the New Year and he would arrange for me to have a Power Port inserted in my chest instead of another Hickman line. A Power port (Portacath) is a similar device going into the main artery but is under the skin no outer parts which means there’s less chance of infections as it’s protected by the skin.

Well thankfully I was able to enjoy another Christmas with friends and family. I know you either love it or loathe it but strip back all the hustle and bustle and money being spent it’s that one time of year everyone really makes an effort to meet up with friends and family if you don’t then you should because a lot can happen in a year and for many it could be there last Christmas so if christmas is the only time families get together embrace it and enjoy it because you might not get another chance.

A New chapter in my cancer journey

July 2017

America was amazing and the kids had a ball.  In LA the excitement started off spotting supercars, however after a few days the novelty wore off as almost every other car they seen was a supercar.

We did two days at Disney and one day at Universal, as my fitness was not great I was happy to sit and people watch while my husband and kids did all the rides.  It was while I was sitting on a summer seat watching the world go by a lady sitting opposite me looked directly at me, walked over and sat down.  As we got talking I told her I couldn’t go on the rides she said “yes you’ve got cancer, my husband had cancer too”.  As we chatted on about things she asked me my name and told me everything would be ok and she would be praying for me.  Just then the kids arrived back so I said goodbye and thank you and left.  Anyone who has been to Disney will understand the chances of bumping into someone again in the park is pretty slim, however a few hours later I took myself off into Starbucks for a coffee and there was the lady again she just looked up at me and smiled.  I still think of that lady and her words to me which were rather comforting as I still hadn’t told my husband about finding the lump so it was just what I needed to hear at that time.

When faced with incurable cancer you think a lot about the end of life and what it means.  As I have mentioned before I was brought up in the church and had always believed in God however as time goes buy and family life is hectic I hadn’t been to church in a long time.  I found a book written by a medium who connects with the spirit world.  His book to me should be read by anyone who has fear of dying as he explains that whether you believe God from Christianity telling’s is the One or believe the Universe is the One or the moon is the One or Mother Nature is the One.  The facts are we are all energy and you cannot kill energy.  The body is a physical being to allow us to live in this dimension.  The body grows old or sick and dies, however the energy within us, our souls cannot die therefore we go on to another realm.

I know many of you will go WTF is she talking about and I am not trying to question your beliefs or preach to anyone but actually having this understanding has allowed me to come to terms of death. If everyone in the world was allowed to believe in whatever makes them happy and comfortable in life then why should we judge or force people to believe in what we believe.  I think if everyone just focused on themselves and didn’t worry about what other people believe in then the world would be a happier place.

We shouldn’t be dictated to about religion and who’s religion is the truth while others aren’t.  There’s no getting away from it we are all going the same direction and will all die at some stage, whether you are buried or cremated it is only the physical body that goes through this as the energy otherwise referred to as many as our souls is released from the body on death.

I have also read a lot of books written by people who connect  with the angels.  I have read a lot about the afterlife, angels and spirits and have had a few appointments with Mediums which I know a lot of people are sceptical off.  However when you have this person who you have never met describe someone you knew who passed away in such detail and refer to things that they would never have got no matter how much FB trolling they did then you have to at least question the scepticism.  Anyway I know its not for every one, but I have got great comfort from these readings and the books I have read as I believe there is an afterlife and I will still see my kids grow up into men and have families of their own, even though I wont be in the physical form.

Well getting back to my American holiday we had a great time in LA we did the Hollywood hills tour seeing many celebrities houses and the famous Rodeo drive were Julia Roberts had an unsuccessful shopping trip until her knight in shining armour Mr Geer took her on a personal shopping trip.  There is a store on Rodeo drive which you have to pay $1000 just to get into it, to prove you can actually afford to shop in it!!! so we just looked at it from the bus as you can imagine and as there were no Primark’s or H&Ms on the strip we gave the stop a miss.

After 5 days in LA we drove north to Santa Barbara stopping overnight here then further north to Monterey having a stop over here to visit the famous Pebble Beach golf course and harbour a special request from my hubby who is a keen golfer.  Leaving here we headed north to San Francisco were we left the hire car and stayed 4 nights.  All I can say is if you plan to go to San Francisco take plenty of cash, in actual fact if you plan to go to America take plenty of cash!! I don’t know where and when I got the impression that America was cheap but believe me it is anything but.  What people had forgot to mention to us was there is a tax added onto everything at the till.  Which basically would be like us only being notified of the VAT on an item when we got to the till.  Also tipping in America is a must with many restaurants taking a 20% tip on a table of 4 or more diners even at breakfast time!!!

Anyway aside from the cost it is bloody freezing! bearing in mind we had been in LA and the California coast were it had been 30+ degrees everyday then boom on with the trousers and fleeces wow didn’t expect that either.  Apparently it is down to being situated right at the Golden Gate mouth where it is near cold ocean waters which draws in wind and fog during the summer.  So a bit of advice if going to San Fran take a few hoodies, although every shop sells them as they have obviously seen that many tourists like us arrive expecting 30 degree temperatures.

While in San Francisco we did the tram ride, the Golden Gate Bridge, Fisherman’s Wharf  were I ate an amazing lobster on sourdough bread sandwich which is a must at Fisherman’s Wharf and Alcatraz which was amazing.  I honestly didn’t think I was going to like it but I did it was really interesting and surprising the kids loved it too and still talk about the facts they learned.

Leaving San Francisco we flew to Las Vegas, all I can say is Whaoooo!!! when you think of Vegas whatever image you have in your head times that by 100. The hotels are huge.  Although we could not go into the casinos with the kids watching people of all ages at all hours of the night and day playing slot machines was surreal.  We had a laugh as we said can you imagine Granny and Grandad, sitting down there at 8am playing the slot machines!!!

It was an experience I must say and in hindsight we said we would have preferred the extra few days in  Vegas than San Francisco. We did the helicopter ride at sunset out to the Grand Canyon which was probably my best bit.  Seeing the red rock millions of years of Geological history was breath taking.  While flying over the canyon I thought to myself of the total insignificant part of evolution we all have here on earth 80-90 years if your extremely lucky 100 years when this planet has been here for millions of years and will hopefully be here in another million years unless it is destroyed by the human race.  Well it was a safe flight and was great to be heading back into Vegas when the lights were coming on a very special trip.

After our few days in Vegas we headed on our final leg of our road trip to New York at which stage I was shattered and could quite as easily flew home at that stage but we had a few days in New York so we needed to get the sights and shopping in.  We were staying on 11th Avenue so walked quite a bit each day.  We took the Hop on Hop off bus tour of south and north and didn’t even bother to get off at any of the tourist attractions we were all happy enough to see them from the roof of the bus.  I think we must be the only tourists to go to New York and not see the Statue of Liberty, as that meant changing to another bus and we couldn’t be bothered.

Well our final day came and we were all ready for home, well apart from my eldest son who I think will live in America when he’s older he totally loved it and said he would quite happily live there.  Although this is the same boy who thinks when he passes his driving test will be driving an Nissan GTR.  Haha what utter disappointments has he to look forward to.

So while we were packing our cases I said to my husband I need to go to the hospital tomorrow as I have found a lump in my neck, I could see the shock in face as well as the sheer panic.  He said “why didn’t you tell me” I said there was no way I was spoiling the holiday for him as I know he is a worrier but in a quiet way.  So he would have tormented himself when all I wanted for us was to go away and forget about cancer for a few weeks.

The holiday was amazing and one that has created lots of memories I hope for my kids to remember in years to come.  One thing that scares the hell out of me is that my kids will forget about me.  As my husbands father died when he was nine years of age he has very few memories of his dad.  Although both my parents are thankfully still alive I try to think back to when I was 11 and 13 and although I have memories of special occasions and events but not really day to day life so how will my kids remember day to day life especially if I’m not in it.  Therefore the only way I can make sure they remember me is by doing very special things together which thankfully due to my pension pay out I have been able to do.  I have had to explain to my kids that in reality the only reason we can do these things is because I have cancer and if they had the choice I would like to think they would forfeit the trips for my health, which unfortunately is the sour grape in our mouths when we go on any of our trips.

I was back to reality within an hour of getting home as I was enroute to hospital again were it was confirmed 99% that the cancer was in my lymph nodes however a biopsy would need to be conducted the following week to get 100% confirmation.

Oh well the holiday was amazing but now I needed to gear myself up for whatever lay ahead.   Until I had a CT scan of my body and a brain MRI I wouldn’t know what extent the spread of cancer was.  One thing I was contemplating though was asking for a new Oncologist I just felt I had come to the end of the road with my Oncologist and didn’t have the energy to fight for the right treatment which I knew was a Platinum chemotherapy or a newly trialled Parp Inhibitor.

I think I was ready to turn the page and start a new chapter in my Cancer journey.

More Brain surgery, Retirement, an American Road Trip topped of with more cancer.

Ok its now been 9 months since I have posted anything but I’ve kind of been a bit busy as most of you will know. Since my last post when I finished off telling you that I was going for another operation on the brain (known in the neuro world as a Craniotomy) to remove another 19mm tumour I’ve crammed a lot in and as you can all guess by now it hasn’t been plain sailing.
On the 15th May I had my operation. As I had been here before I wasn’t too anxious about the operation. Although on the Monday morning when they were getting me prepped for theatre they mentioned my gel nail polish. I told them that I’d only just got it on a few days before as I was meant to be in Majorca on holidays, not actually being prepped for theatre. They laughed and said ok we will just remove one nail. Mr F (my neurosurgeon) came in to talk to me about the surgery and check they had shaved my head in prep. He decided he needed another bit of my hair off so with the nurse using acetone to try and get my gel polish off and Mr F shaving my head it was just like being at the beauty salon which we all had a laugh at.
After surgery I was obviously groggy but recovered well apart from a low blood pressure which was normal for me. I continued to improve over the next few days taking plenty of prescribed drugs to relieve the pain. Mr F had told me the operation had gone well and my MRI a few days later showed they had got the tumour all removed.
This is what the head looks like after a craniotomy… look away if you are sqimish!!

 

Anyway, Mr F had agreed that my whole brain radiotherapy would wait until I was home from America in July, so I was just concentrating on getting over the surgery as I needed to get a fit to fly form signed by Mr F for the airline company before I would be allowed to travel.
Two weeks after my brain op was my retiring party with all my colleagues. Sad to think I was having to take medical retirement from my job at 38 years of age but it was the right decision. Everyone was really concerned about going ahead with the party, but I was adamant that the show must go on. So, on Friday 26th May on probably the best summers day we had last year we all met in the restaurant for my lunch. All my colleagues who were my friends having worked with them for 8 years as well as older colleagues/friends who I had worked with previously had bought me beautiful gifts, flowers, vouchers and $ for my upcoming trip. After lunch we went to the roof terrace to soak up the sun it was an amazing day and one I will never forget.
When an appointment came in for my whole brain radiotherapy planning meeting I assumed it was to get it started as soon as I came home from America. Therefore, when the oncologist told me I was starting it the following week I protested saying I was going to America and that Mr F had told me the whole brain radiotherapy could wait. But that fell on deaf ears and I was told I was starting it the following Monday for 5 days.
Whole brain radiotherapy was once the only option for brain tumours as chemotherapy did not penetrate the blood brain barrier. This is the barrier at the top of the spine which is there to protect the brain normally from infections and virus’s. However, over the years there has been some development in chemotherapies for brain tumours, but these are still limited and there is a lot of research ongoing to try and get chemotherapies to penetrate the blood brain barrier.
As I’ve mentioned before the development of Stereotactic Radiotherapy aka. Gammaknife or Cyberknife are new types (10 years) of radiotherapy which targets the tumour only and not the whole brain as the long term side effects of having whole brain radiotherapy are quite severe such as problems thinking clearly, difficulty managing tasks you previously found easy, poor memory, confusion, personality changes, headaches similar to migraines that come and go (called SMART attacks)
However, I had no option but to go with the whole brain radiotherapy as Mr F had said there was a risk that there were cancerous seedlings somewhere in the brain lining that gamma knife would keep missing and therefore I’d be back in the same position every few months and I’m sure there is only so many times I will recover from open brain surgeries before major complications would arise.
I must say I found the Whole Brain Radiotherapy tough. The nausea I had with it was awful I couldn’t eat, and the fatigue was so suppressing. The Side effects went on for well over a week, therefore a week before we were flying to America I was still in bed and not a suitcase packed. To be honest while I was lying in bed I could think of nothing worse than flying to America. So, it really did ruin the whole anticipation of going on such an amazing holiday.
A few days before we were flying I started to get my energy back and thankfully the nausea left me, so the suitcases were packed everything was finalised and on Friday 30th June we headed to the airport to start our road trip. Once at the airport with a few hours to kill we went for lunch it was while I was sitting waiting on my lunch I happened to rub the left-hand side of my neck I felt a lump. I knew exactly what this was however decided in that split second not to mention this to my husband as I didn’t want to ruin the holiday, however being in this game for almost 2 years I knew it was a swollen lymph node and although there could be reasons such as infection for it I had no symptoms of an infection therefore the plausible explanation was my cancer had spread again.
With the spread of cancer put to the back of my mind (well as much as possible) I decided we needed to enjoy this holiday without the worry or talk of cancer. We finally boarded our flight to LA at 2.30pm with an eleven-hour flight ahead I got settled into my seat and started my marathon of Suits. Unfortunately, during this flight my hair started to fall out!! This was a side effect of the whole brain radiotherapy which I knew about, however I had hoped it wouldn’t happen until we came home so I have one holiday photograph of me with hair the rest I don’t. So, all in all Ive had yet another eventful period with more brain surgery, retirement, an American road trip, topped of with more cancer.

Been Here before

At last I had good news the ultrasound of my liver was good and when Dr J rang to give me the results of my bone scan he said everything was clear except for a gathering of contrast in my skull which could be caused by scar tissue.

I had recently put pen to paper and sent a letter to my Neuro Consultant, something which I have been known to do in the past a few times (its a running joke with my friends if I have a complaint about anything they say ” oh no the letter is probably written”).  So 3 months following my Gamma knife and seizures I still had not received a follow up appointment with the Neuro consultant  and after a phone call I learned that I would not be seeing them again and would be seen for my next review by Dr J.    So needs must I wrote the letter.  I must stress the letter was not abrupt or aggressive but merely thanked all the staff involved in planning and carrying out the Gamma knife as it was very professional.  However I did then state a few issues I felt they had to learn from on aftercare service to ensure other patients would not have the same issues I had.  The biggest one for me being that my consultant did not feel it necessary to see me again or arrange a follow up brain MRI but passed me straight by to Dr J who you all know by now is a Breast Oncologist not a Neuro Oncologist.  So I stated in my letter that surely Neuro would want a follow up scan to ensure what they had done had actually worked on me and the tumour was gone as well as a few other issues I felt was not good aftercare service.  Not surprisingly I did not receive any acknowledgement for the letter apart from Dr J telling me on the phone that day that I was a nightmare writing letters!!!!! Oh how they will all get to know my letters!  Well anyway the results of the scan was good news for me the best I could have wished for.  So that weekend we headed away to a friends house at the beach.

Easter came and went I continued with my fitness regime, taking my cannabis oil and turmeric juice everyday and feeling really well.  My holiday to Majorca was fast approaching so B my sister and I were really looking forward to a few days away.  With my upcoming medical retirement from my job after 17 years I had booked a family holiday to America.  We would fly to LA drive up the California coast stopping off a few places then drive to San Francisco, fly to Vegas finishing in New York we would be away a total of 18 nights.  The kids were ecstatic about the trip which would take place on the 30th June it would be a holiday of a life time and one which we would be together making lots of special memories and something to look forward to after such a sh!t time for us all.

My friends in work had organised a leaving party for me at the end of May although my official day of retirement would be 11th May the day before I flew to Majorca. Everything was starting to fall into a routine and I finally got an appointment in for my three month (now 4 months) follow up brain MRI for 31st May.  The week before our girly trip I booked in for my top to toe pampering at my beautician and hairdresser getting my gel polish on my nails.

The Monday night prior to our holiday I was sitting at the kitchen table with my youngest son while my husband and eldest son went to the golf course.  A strange feeling came over me which I could only describe as everything seemed really far away from my when I looked at my hands in front of me it looked like they were at arms length.  When I was marking my sons spellings every time I tried to circle the mistake I completely misjudged the point on the page.  Then when opening the dishwasher I missed the handle a number of times so when I got double vision I thought I was about to take a seizure so left my son downstairs and went up to my bed and lay down.  When I realised my husbands phone was beside the bed I rang B to come as I was scared what would happen with my son being there.

Ten minutes later she was there and gave me a diazepam as the doctors had told her to do that if something like this was to happen.  Strangely the feeling left me as quick as it came on me and I was fine the rest of the night.  However with going to Majorca a couple of days later I thought I better see the GP just to explain what happened and see if it was a seizure.

The following morning I seen the GP who said it sounded as if I had an Aura which some people get before a migraine but because of my history she wanted to speak to Neuro and would ring me.  So happy enough I left the surgery and went to a friends house and ate lunch out in the garden.  I was just in the middle of lunch when my phone rang it was my GP to say having spoke to Neuro they said I needed to go to A&E for a CT scan.  Not too bothered by this announcement B and I finished our lunch and headed to A&E.  After all the formalities and preliminary tests I was sent for a CT scan of the brain.  A few hours later the young registrar who had been dealing with me called us into a side room and said those words I’m so used to hearing now ” Sorry Lynette its a tumour its 19mm in the same area as the last one.” This was obviously the area which the bone scan had picked up in April, however as I hadn’t had a brain MRI as yet it had not been conclusive.

Ok I’ve been here before I can deal with this I know what to expect, but there goes my holiday to Majorca what a bloody inconvenience!! No really after everything sunk in that night while lying in my hospital bed after being admitted I did my usual thinking and realised that this happened for a very good reason at this time.  I thought what the consequences could have been if it hadn’t happened and I went to Majorca, indulged in too much sangria and something happened to me out there.  Yes although I was disappointed I wasn’t going for me the positive was that I was in hospital being looked after.  Believe me I wasn’t always so philosophical  I would have been spitting feathers not being able to see past my own nose of the reasons why somethings happen for a reason but when you encounter so much negativity you start to think why is this happening and then start to think logically about why something has happened.

Over the past 2 years I have read lots and totally believe in the Law of Attraction.  If you haven’t heard of it or haven’t read about it I advise you to do so.  I honestly believe I see things in a totally different light now.  One thing you really notice when you start practising the Law of Attraction is actually how negative we all can be.  How am I meant to?…. That won’t work…. or one I hear cancer patients encountering from their clinicians of all people is “we will try it but it probably won’t work”….. really do you seriously think that gives anyone any hope? I have really tried to ingrain positivity into my kids too.  why would we not encourage our kids to be the best therefore when my son says he wants to drive a supercar I tell him well if you really want that then you need to work hard in school and university, get a good job, and someday you can have a supercar but you have to really want it for it to happen because only you can make it happen its not going to fall out of the sky.  Why would I boohoo him? and tell him “aye son dream on only the super rich and famous drive them”

Set yourself a task someday say ok I’m not going to be negative about anything today but consciously be positive, you will feel better at the end of the day but you will also notice how negative other people are and negative energy is very draining.  These people are referred to as energy vampires, when you are in their company you feel drained as they suck all the positive energy out of you.  Give it a go someday you may be surprised!!

So my tumour being found 3 days before me going to Majorca was a positive, but then the realisation of my family holiday to America may be in jeopardy which was devastating as I knew how much my kids were looking forward to it.  As you can imagine our family holiday wasn’t a cheapie and only that I got a small lump sum from medical retirement was the reason why we could do it.  It just so happened my balance was due in 3 days time so I was in complete turmoil.  My husband picked me up from the hospital as I was discharged the following day.  I rang my travel agent who I had spoken to a lot over the previous few months planning the itinerary so he knew all my circumstances.  I think when I spoke to him and said the words out loud the realisation dawned on me and I cried down the phone to him.  He told me he would get an extension on my balance to be paid to enable me to see what the plan was.    In the car I said to my husband not to tell the kids yet until we knew what was happening but when we got home and told them I wasn’t going to Spain on Friday they asked why and when I told them it was because the doctors did not allow me to fly they both looked at me and asked “for how long? sure we are going to America.”  I was more gutted for them than I was about having another tumour, it was the one thing I had wanted to do with them and now it was in jeopardy!

The following day I got a phone call from the bed manager in the hospital to say I had to meet my neurosurgeon the following day as he was going to operate on Monday.  This was the best news I could have hoped for so the following day after meeting him I was in such a better place.  Him being his usual get down to business, here’s what is going on, here’s what I am going to do I told him about my American road trip he looked at his calendar counted up the weeks and said “ok you should be good to go, we will wait and do your Whole Brain Radiotherapy when you get back in July”. At which stage I could have leapt off my seat and hugged him, instead I said “that is brilliant news I can tell my kids we will be going to America after all”.

That afternoon my husband and I left the hospital with huge smiles on our faces you wouldn’t think we had just come out of an appointment being told I was getting open brain surgery in 3 days time.  I rang everyone to let them know including B and my sister who I had insisted go to Majorca that day without me much to their resistance.

Ok so I’ve been here before another Craniotomy I can deal with that especially knowing it was being done by my very trusted and amazing neurosurgeon….  but they better not make me take my gel polish off before theatre!

 

 

New life

Over the next few months I began to get into a routine of my new life.  I went swimming a few times a week and planned to complete a sponsored swim by swimming 30Km’s in 30 days later in the year.  There were a few fundraising events held by family and friends as this year I had picked Second Hope (www.Secondhope.co.uk) as my beneficiary following on from such a successful year in 2016 when family and friends raised an amazing £23,000 for Inflammatory Breast Cancer, all of which was handed over to Dr B in Birmingham University which was the only research lab in the whole of the UK conducting research into Inflammatory Breast Cancer.

I applied to be a volunteer on the Cancer Research Consumer Forum to provide the Health Service and the Clinic Trials Networks feedback from a patients perspective.  This involved attending meetings with other patients, clinicians and researchers which I found really interesting.  It was surprising to see the volume of research and patient participation which was going on.  I would have been guilty prior to my own diagnosis of being oblivious to all this I suppose we are all guilty of burying our head in the sand but feel we are contributing and supporting research by putting a few coins into a money box or paying a monthly direct debit and by no means am I boohooing this generosity  as yes every penny counts. I felt I wanted to raise awareness and funds specifically for a local university who had a lab specifically researching the brca gene mutations.  I decided a Black Tie Gala Ball would be appropriate so started planning the event by getting quotes for room hire and food, designing and printing tickets, collecting ballot prizes and items for auction with the help from a few friends from the BRCA support group and my friend.

We were invited to attend the University lab and meet the Dr in charge of the research lab.  It was a very informative morning and we all could have listened to him talk for hours.  Having seen first hand the work these Researchers do I believe they are totally under appreciated for their work which is not just in cancer research but research which is being conducted into MS, Alzheimer’s, diabetes, cardiovascular diseases and lots more.  Without the skills, expertise and most definitely the enthusiasm of these people the doctors would certainly not be in a position to save so many lives.

I know there is a lot of scaremongering about big pharma’s not wanting to find a cure for cancer and this is another phrase people like to tell cancer patients.  Personally I had never given it a second thought although now I see these accusations must be a real insult to these Researchers who spend every working day for years investigating medicines against various cancer types.  If any part of that statement were true these scientists would be extremely demoralised as all their research was a fraud as they don’t really want to find a cure for cancer which is absolutely absurd.

Anyway all the Researchers hope that in the future cancer will be a chronic illness which people will manage with medication just like diabetes, MS and cardio vascular disease.  Already I have met a number of women on my support group who have been living with Stage 4 cancer for 5, 7, 10 years.  It would be great if this was the case for most if not all cancer patients.  However to maintain this it will obviously cost the NHS billions of pounds of which they do not have.  So realistically we all must take some responsibility for this, perhaps being a bit more selective on what we ask the doctor to prescribe us.  Do you really need a prescription for paracetamol or heartburn tablets or gluten free bread??

Likewise for actually going to the GP, do you really need an appointment for a cough or cold which will clear up in a few weeks.  The rule of thumb with cancer patients is if you have new symptoms which haven’t cleared up after 2 weeks go to your GP.  So surely if everyone used a common sense approach this would lessen the burden on GP’s.  However taking over the counter medicines and improving our diets to include lots of fresh fruit and vegetables especially in the winter months, and some old wives tales are the best remedies.

When you are diagnosed with cancer its amazing how many people become experts in the disease and give you advice on what to eat, or what not to eat or drink which can sometimes get very irritating.  However a Polish Dr my husband had been doing work for had told him to get me good organic fresh turmeric, ginger, honey and lemons. You would be surprised by the health benefits of turmeric or curcumin what its also known by as well as all these ingredients together.  I have been taking this for over a year now and I do think it has helped me especially when my immune system has been low.  I would recommend anyone who is going through cancer to take this, I’m not saying its a miraculous cure but its good for the body.

After conducting a lot of research I also started taking cannabis oil which I ordered online from a shop in Amsterdam.  I took it every night and washed it down with my turmeric juice.  Again I was under no illusion that this was going to cure me but I had read so much about cannabis oil and seizures so I felt it was worth taking if it would reduce the likelihood of me taking further seizures which would mean I could get my licence back which I had to surrender to the DVLA.  I told Dr J about taking the oil and was surprised by his reaction of not saying anything one way or the other, I have told all my Drs I am on this and actually now most ask are you taking any alternative medicines and do not show any shock or disgust when I tell them I am taking cannabis oil.

Ok so over the next few months I was feeling really good, exercising and following a healthy eating plan.  I was looking forward to a long weekend in Majorca with B and my sister at the start of May.  Then I had my official retirement date and a get together being arranged by my friend and work colleague.  When we had talked about when I was leaving and what I wanted to do I said to her sure you can organise it.  She said yea “ok but knowing you, you will tell me where it has to be, when it has to be and who has to be invited.”  Oh she knows me so well.!!

I had an appointment with Dr J at the end of March so told him about pain I had been having in my left rib cage.  I had also had my full blood count taken at the GP’s recently which had shown an elevated liver function so DR J told me I needed an ultrasound of my liver and sent me for a X ray of my chest.  I was also waiting on my follow up appointment for brain MRI.  So once again I was waiting on scans and results….. scanaxiety!! just part and parcel of my new life!

 

When will this ever end?

We had a lovely Christmas with family and went away for a few days over New Year. I was able to eat all the lovely food and enjoy it compared to the year before.

The day after New Year’s Day I rang to get an appointment to meet my Neurosurgeon and get the results of my MRI. The following week I went to meet him   he showed me my scan from post surgery and the one from December. A small tumour had grown again in the cavity of where he had removed the previous tumour.

Just as he was explaining this to me the door burst open and a lady Dr arrived in introduced herself and a radiographer and said she would be carrying out Stereotactic Radiotherapy on me the following week in this hospital as they had setup the new service and I would be the first person to receive this Gammaknife in this hospital Trust. I was over the moon to say the least afterall this is what I had wanted straight after surgery.

They explained that I would go for a MRI that day then go for the Planning appointment which involves making a mask for my head. Going through the normal questions of how I had been feeling recently was I well etc. Bearing in mind I’d had no symptoms of this new tumour growing in my head apart from headaches which I had put down to healing from my operation and had been on 2mg of steroids since October which  I then had come off in December following my appointment with Dr J. However overall I had felt well and I had been swimming and walking trying to get my fitness back

Oh one thing I forgot to mention earlier was just to add to all my ailments I took a blood clot in my leg after my surgery in September. About 2 weeks post surgery I took a pain in my right leg which got worse over a few days so I went to see the GP.  Who after examination said you don’t have any symptoms of a blood clot other than the pain but we will send you for an ultrasound just to be safe. Well you know how lucky I am when it comes to scans so I ended up having to inject myself in the tummy with claxen for 3 months just to add to everything else!

Ok so at the meeting with the Dr she explained I may get nausea and tiredness from the Gamma-knife. I told her I had researched quite a bit about it and had been asking for it so was just glad I was getting it now.

At the planning meeting I had to lie really still while a number of staff worked over me making a mould for my head. The staff were lovely and really excited that after all their training and practising on each other they were finally doing it all for real. After a very long day at hospital I went home to come back a week later.

I had to be at the hospital for 3pm for following week again the final preparations were made I signed all the consent forms and was led down to the room. The Dr advised that my MRI the previous week had showed the tumour was very close to the skull so I would probably lose some hair just at the patch were they would be beaming with radiation.

Forty five mins later it was all over  painless although just starting to get to the claustrophobic stage. So all done we left the hospital and went home. The next few days I took it easy but felt absolutely fine.

After Dr J had told me about the possible tumour in December I had done a lot of thinking over Christmas whether going back to work was actually a good idea. I had started to realise that this was going to be my life now living between scans. I knew that my employer was accommodating at the minute however I knew there would come a day when I no longer had the option and the decision would be made by someone else.  Me being me I would prefer to have control of the situation and know it was my decision to go so after a lot of deliberation in my own head I broached the issue with my husband.  This was a major decision to make I was leaving my career one which I loved we would have less income coming into the house and I think it was the final realisation that I had stage 4 cancer, an incurable cancer that would one day kill me, but in the meantime this was our new life.  We were a family living through cancer, a mummy who could no longer work and my husband would now be the bread winner. The implications of this decision were huge however the more we talked about it the more we realised none of that stuff mattered and we would get by. My friend who I had met on my cancer journey said to me that she had gone back to work after her very traumatic stage 4 diagnosis only to take a relapse 9 months later at which time she realised she had dedicated 9 months of her feeling good life to work when she should have been spending this time with her family. So with this very much in my mind I finally made the decision to apply for ill health retirement not something you ever expect to have to do at 38 years of age.

After my gammaknife I had felt fine so had went back swimming and walking the week after. I had been to the pool again on the Tuesday morning 12 days post gamma knife then went for breakfast with my mum and sister.

Later on B had called at my house as her car had been in getting a new spring as the day before she had hit a pothole. While sitting chatting having a cup of coffee I said “oh I must ring the GP” so I rang and got through to the receptionist.  When I went to ask for something I couldn’t remember what I wanted my mind went completely blank…nothing! I could not remember why I had rang. B took  the phone off me and told the receptionist we would call back.  That was the start of a very very scary time for me and my family.

After the memory loss came the paralysis. B rang my husband to come straight home from work and not collect the kids.  She then rang the the GP surgery and explained what was happening they told her to immediately put down the phone and ring 999.

All this time I could see and hear everything but couldn’t move or communicate. A paramedic arrived and started doing all my stats. It was at this stage he did the pain test on me and I didn’t flinch. He said to B she’s paralysed she can’t feel that! B said it was terrifying the paramedic radioed through for an ambulance and said “if this is a stroke we are an hour and a half into it!” My husband had arrived home at this stage and was sitting beside me. I remember thinking I’m having a stroke Im paralysed. B told me afterwards that my eyes started to flutter from side to side and she said to the paramedic “oh look her eyes are fluttering again” he looked at my eyes and said she is having a seizure. At this stage all I remember is my head jerking to the right and me making a groaning noise I remember seeing another paramedic coming through the door and then blanked out. Afterwards B and my husband said the paramedics cut open my top put needles into me put me on the stretcher and wheeled me out to the ambulance. I remember coming around just as they were putting me into the ambulance. I took a further 3 seizures in the ambulance enroute to the hospital.    There was 2 paramedics in the back and the driver so my husband had to sit in the front he said he was shaking like a leaf by the time we got to the hospital with the speed of the ambulance and seeing me.

I remember briefly again voices saying they had arrived at the hospital then nothing again as apparently I took another seizure in resus. B had driven up to the hospital in her car so her and my hubby sat waiting for the dr to come and see them.  They said it was horrendous they didn’t know what to expect the Dr to tell them they didn’t know whether I would have any memory or be paralysed they were petrified. A while later the Dr came and told them I’d had 5 seizures and that they had medicated me and I was sleeping they were allowed in to the room. Still they didn’t know what to expect when I woke. A few hours later I started to waken and was mumbling between sleeping. They said then all of a sudden I woke up and asked what happened, then asked them to get me a drink and chocolate! They said they looked at each other and said oh she’s fine she’s thinking of her stomach! I was moved to the ward after 1am and B and my husband were able to go home.

The following day I got discharged from hospital, put back on steroids for a few weeks and my anti seizure tablets that I had been taking since last summer for the jerking and twitching caused from the first tumour was increased slightly.

Before I left the hospital the neuro oncology nurse came to see me and advised that the seizures were a side effect of the gammaknife.

At home everyone was scared to leave me on my own for the first week or so.  I read up on seizures and discovered there are different types of seizures of which I had experienced all of them from the memory loss, the paralysis, the loss of consciousness, my body going stiff and my lips going blue.

well I think you have all gathered by now I don’t do things in half measures. I had said to Dr J one time “if it can go wrong it will go wrong with me”……. well I wasn’t wrong, I just wondered when was this all ever going to end?? Please please give me a break……..