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 ( 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……..

Road to recovery

I was due to have my surgery on the Monday but got a phone call on the Thursday to go into hospital early and have my op on the Friday.

Of course I jumped at this as the sooner this was gone the better. I went first to theatre and had agreed with my husband there was no point him coming to the hospital that night as I’d be groggy.

bearing in mind I had the back of my head shaved,  skull drilled into, opened like a hatch door and the tumour removed which is a pretty big op. You can imagine everyone’s shock when I started texting jibberish texts from the ward late afternoon, informing my hubby to bring me food! A few hours later I was propped up in bed eating chicken sandwiches and minstrels Although I was still debilitated with catheters and drips.

Saturday I managed to get out of bed and was just wanting to get home by now, so on Sunday morning I knew my surgeon was doing the rounds I got myself up and showered and was sitting up in bed fresh as a daisy when he came in.  He agreed I could go home. So two days after brain surgery I was walking out of the hospital and going home to my own bed and family.

I continued to recover well from the surgery and managed to come off the steroids a week later and reduce the painkillers.  I had heard and read a lot about Stereotactic Radiotherapy which is a very precise radiotherapy using laser beams to pinpoint the exact location rather than Whole Brain Radiotherapy which has severe side effects as it targets the whole brain. Gammaknife  and Cyberknife are the widely used terms however these are the brand names of the instruments which perform stereotactic radiotherapy.

I was very keen to get Gammaknife just to mop up any cells which may have been left after the op, however the Multi disciplined team (MDT) did not agree so unfortunately I had to put up and shut up, even though I did refer my neurosurgeon to a paper which had been literally been published and presented at a Radiology conference in Boston  to say that Stereotactic Radiotherapy should be given after  all surgery as a mop up.  To be fair to him he knew what paper I was referring to and agreed with it however his hands were tied as the hospital I had surgery in did not offer Stereotactic Radiotherapy so he had referred it to another hospital and it was that MDT that had refused me Gammaknife. but my follow up plan was to have 3 month MRIs to monitor for anything new my next one was due in Dec.

As I continued to heal well I started  to have major headaches, I lived on Naproxen anti inflammatories so of course I was anxious that something else was going on, however  I did get reassurance from my neurosurgeon when I had my six week review when he explained to me that he had cut through all the nerves on the back of my head so it was completely natural that I was having headaches.

I had made the decision that I would return to work in January so in November I attended a meeting with personnel who told me I had an option to apply for I’ll health retirement. I was sort of taken aback by this as I was a career person and had worked since I was 14.  I couldn’t imagine not working so I dismissed the suggestion and said I fully intended to come back to work in the New Year.

Over the past few months I had put on a lot of weight with the steroids I had been on so I decided now I needed to start excercising and joined the gym at the local leisure centre. I went to the fitness suite and started to swim again. I managed one Pilates class then started having back pain. This went on for about a week and seemed to get worse at night.  Of course anyone who has had cancer will understand how I had myself convinced the cancer had spread to my spine. I had myself so worked up I contacted my breast care nurse who I had seen once since my secondary cancer diagnosis.  Yes while I’m on the subject of the breast care nurse (BCN) I rang my BCN in September to get an appointment to talk about my secondary diagnosis and she didn’t even know I had been diagnosed with brain mets! Talk about lack of communication or a case of my secondary diagnosis not being important enough to be discussed at a MDT meeting!!!  As I’ve probably said before the difference between being diagnosed with primary breast cancer and secondary is night and day. Primary breast cancer there’s a cure secondary breast cancer there is not. Since my secondary diagnosis I have started raising awareness and fundraising for Second Hope www. which is a charity set up and run by women with secondary breast cancer specifically for support and research for secondary breast cancer. The support I have been offered by the health service since my secondary diagnosis has been non existent!it is absolutely shocking and only I have been proactive in finding my own support groups I would not know of any.  Therefore anyone women who is not on social media or the internet must feel extremely isolated.

There is a general feeling amongst patients that the care and support available to women with secondary breast cancer is second class which is so wrong and needs to change. I am determined to highlight these issues and lobby government to ensure women who are most vulnerable with death sentences hanging over their heads are treated equally to primary diagnosed women.

Ok getting back to my back pain my BCN told me that she had spoke to Dr J who said if it was that bad I should go to A&E. So after another night of taking Naproxen Diazapam and codine I went to A&E. I must say the Dr was very good and thorough and sent me for a MRI.

After a few hours wait I was called back into see the Dr who informed me she was due to finish her shift but wanted to see the results of my scan before she went and was pleased to advise that I had two bulging discs!  Now I know to a lot of people this wouldn’t be good news but to me it was the best news I could get. So I left the hospital that day still in pain but a lot happier.

The next few weeks I went to physio and started preparing for Christmas.  The last Saturday in November I received such sad sad news that a young beautiful lady in my Inflammatory Breast Cancer support group had passed away. Although I had never met her we had talked on line I knew her chemo had stopped working and she was going away with her family for a holiday to the Lake District then coming back to discuss options with her oncologist. She passed away peacefully with her family around her! It broke my heart I shocked at how quickly it happened and was so sad for her and her family. It also reminded me of the reality of what was ahead for me and my family and others I had met.

i had my follow up MRI on 17th December the same day I had my works Christmas party so after my scan I got my party gear on and went out for a good time. I was out the following day too with a crowd of girlfriends so it kept me occupied over the weekend and I didn’t think about the scan results much.

Tuesday 20th December I went for my appointment with dr J to get the results and to give him a Christmas present being the sarcastic cow I am I had got him a mug with a glass half full on it and No Doom and Gloom allowed in 2017! And a big sun with the caption “I’m a freakin ray of sunshine” As you all know by now he is so not a freakin ray of sunshine! So after he opened it and I told him that 2017 was going to be a positive year he told me that my brain MRI had showed an area of significance.  However my neurosurgeon would see me snd explain everything to me.

i had already decided that I wasn’t going to tell anyone apart from my husband and B who was with me at the appointment and that everyone would have a really enjoyable Christmas including me and whatever was showing on the scan could be dealt with after Christmas.

I was starting to get used to this news I suppose it’s a case of the more you get kicked in the stomach the easier it is to take.








The Daze

When you have cancer you read lots of medical advice about avoiding stress, well when you are told you have most likely got secondary breast cancer in the brain then told you cannot get a MRI for a week to confirm it, then left for a further week for the results. Booked in for a CT scan the following week to see if the cancer had spread to my liver, lungs or abdomen and left for another week what else would anyone be but stressed.  Believe me those four weeks were the worst weeks of my life.  I had been put on steroids and anti seizure tablets immediately and had started to have side effects from these as well as the swelling on the brain I had a constant tremor, no concentration, loss of short term memory, hot sweats and just a general feeling of being dazed all the time.

As soon as I had been diagnosed I was advised I was not allowed to drive although I knew myself I was not fit to drive.  To deal with the anxiety of waiting on scan results I had also been taking diazepam so spent a lot of time in bed or in my room on my own just not feeling normal.  I hated the feeling I wasn’t in control of my own body and could hardly climb the stairs I felt so weak.  As well as dealing with the physical symptoms I had to come to terms with the mental aspect of being told I had secondary breast cancer in the brain.  I remember looking at my wardrobe of clothes one day thinking well I won’t need all those clothes as I won’t be here this time next year, I was truly in a very dark place at this stage and it was at this stage my friend took me to her church.  It was so peaceful it was a lovely summers day and the church smelt of all the dozens of flowers which were arranged around the church it really was a beautiful place and there I prayed to God for my life.  I have been back to this church on numerous occasions as I feel it is a place of peace and calm where I can sit, gather my thoughts and pray.

Although I had been brought up going to Sunday school and believing in God I had not been in many years since having my kids, working and busy with life.  Since last August I have found great comfort in going to church as well as having visits from my minister. People may find it hypocritical that I’ve only turned to the church since I was faced with illness and believe me I have thought that myself.  However someone recently told me they had listened to a sermon when they were in the same situation as me and the minister had said that turning to the church as this time is good as when life is going well and we think that we have everything sussed and we don’t need anyone’s help or guidance then you may not go to church with the same openness.

Well I am thankful for the support and guidance I have got from all denominations of churches over the past  18 months.  I have had people pray for my health the width and breadth of the country and I continue to be on many prayer lists and nightly prayers.  I thank my friend for taking me to church that day last August and introducing me to this church.  I also thank another friend who has had her own family tragedies who has taken me to her church, has lit numerous candles for me and has been such good support when I really needed it. Every week she visits me or offers to take me out for the day or just generally been there, I will never forget what she has done for me.

My daze continued until I met my neurosurgeon on 8th September.  DR J had told me that the tumour was in a position which was operable so had referred me to neurosurgery.  Knowing I was going to have brain surgery I had done my research on all the neurosurgeons experience so when Dr J told me who he had referred me to I was pleased and said “oh that’s good as I’ve done my homework and had picked him” to which he shook his head and said you are unbelievable” so my reply was “well if someone is going to operate on my brain I want to know they are good at what they do.”

Although I had been informed at the start of September that my CT scan was clear meaning thankfully the cancer had not spread anywhere other than my brain and the tumour there was small  I was still anxious and was still having side effects from the medication one of which was starting to look like a chipmunk from the steroids.  So when I met my neurosurgeon and he was so confident and matter of fact about the surgery he put me at ease straight away. He advised me that I would have my surgery the following week and told me I would have my pre op assessment that day to save me coming back to the hospital a few days later.  I came away from the hospital that day as if a massive weight had been lifted off my shoulders.  Just the confidence he portrayed gave me confidence, he looked me in the eye and said “Lynette people have this operation and live for years so don’t think this is the end” those few words from him were enough to give me hope for the future it was a turning point for me that day and I started to see light at the end of the tunnel.