The worst was yet to come

The day after I got my results I had an appointment with Dr J.  at this appointment I was hoping to get his agreement on starting the new chemo which the Royal Marsden had recommended.  After another lengthy debate over the pros and cons of having the chemo we both agreed that we would wait and start my chemo when we both got back from our holidays.

Over the past few weeks I had started to feel a small lump along my scar line which I hadn’t felt before so after Dr J checked it out he said he wanted me to get an ultrasound of it.  The following day B picked me up from work and we made our way to the hospital for the ultrasound.  Another anxious wait for B sitting in the corridor, was made slightly better when she seen Dr J walking down the corridor  in his suit.  Although she then realised that she didn’t have her usual “going to meet Dr J” make up and dress code on as she misjudged him being at the hospital that day. lol!!   I suppose you could say he was handsome but as my Dr and someone who I had many, many debates with  he was at times Dr J and other times when he didn’t do what I wanted he was Dr Ballbag! Thank god he found this funny when I did tell him one day I was in foul form.

Well thankfully the ultrasound and biopsy showed fat necrosis which was most likely from scar tissue so we left the hospital relieved of some good news for a change.  The following week it was my 38th birthday and my family left to go on holiday to the Lake District. We stayed in a log cabin with a Jacuzzi, went out on the lakes, the kids went Zip lining, we went quad biking, cycling, roller coasting and hill climbing.  The weather was great and we had an absolute ball.  I wanted to make the most out of the holidays as I knew I was going home to start 3 months of chemo and wouldn’t be up to much the rest of the summer.

On Tuesday 19th July I had to go to the clinic to get my bloods taken.  Before you get chemo you get bloods taken to check your liver, kidneys and white red blood cells.  That day was a lovely summer day and my husband was having wine with his dinner.  I was sulking as I couldn’t have wine then we remembered I’d already had my bloods done earlier that day….. Result!!

The next day all geared up ready for chemo no.1 Dr J dropped the bombshell that I wasn’t getting it! My heart sank to the floor once again another debate of the pros and cons followed.  I was well aware of the risks of chemo Id had 6 cycles of it before I was not putting myself through 3 months of chemo for the sheer hell of it.  I wanted to give myself every opportunity of getting rid of every single cancer cell that might still be straying in my body and I would question anybody that says they wouldn’t do the same.  This wasn’t a choice about having a flu jab or not this had the potential of stopping me from progressing to Stage 4 cancer in the future the risks associated with having chemo were well worth it.

Leaving the hospital that day I realised that I may have to change doctors.  As much as I had built up a rapport with my Dr and would hate to have to start again with a new Dr I was adamant that I was going to have this chemo and if that meant going elsewhere well that’s what I would have to do.  I rang and left a message for Dr J to ring me after clinic.  I was gutted to say the least I thought I had got over the last few months of arguments when my BRCA result had come back positive.  Later when Dr J rang me I just said straight to him that if he wasn’t comfortable with me starting the new chemo then he could refer me to someone else and that there would be no hard feelings on my point.  He agreed to take it to his MDT the following day and get his colleagues opinions and would ring me after. That night I was so downhearted I always made sure never to cry in front of the kids or to go to bed or shut myself in my room, however that night I did all three.

The following day he rang me to tell me that the MDT had decided that the chemo would go ahead and that I had to be at the hospital on the Tuesday to get another hickman line inserted and then the chemo clinic on the Wednesday.  As I was back to work I busied myself for a few days until D day.  Finally I started chemo, yeah!!!  5 months after my mastectomy.   I took the next few days off work but went back to work on the Monday as the side effects were bearable.  The following week I went to work, however as the week went on I started having headaches a few nights getting into bed around 9 with a scarf over my eyes as I felt it was a migraine type headache and most like a side effect from the chemo.  Over the weekend my headaches continued and had started waking me at night.  I was taking painkillers every 4 hours so by Sunday I couldn’t stick the pain any longer and rang the Chemo Helpline which gets through to the ward in the hospital, they told me to go to the ward.

I had all my stats taken, bloods taken from my Hickman line and given tramadol.  Across the ward from me was a guy under arrest lying sleeping his alcohol fuelled night off him.  It made my blood boil to see two police officers having to man him a bed being occupied and doctors time being taken by a man fuelled with alcohol and most likely throwing his weight about the previous night.  Later that evening I was discharged with tramadol.

The following morning I received a phone call from the chemo clinic to ask me to go up as the blood cultures had come back from the lab and there was an infection in my Hickman line.  At the hospital a Dr from the ward came up to assess me and requested that I be admitted to the ward. They had to get in contact with Dr J to ask if they could remove the Hickman line.  Oh my word this is all I needed after all this time of finally getting the chemo I have an infection in the Hickman line if they do not allow me to get another hick man line then my veins are so bad they wont get the chemo in…..no, no, no!!!

The following morning when the Dr was doing his ward rounds he assessed me again.  I happened to mention that as well as the headaches I had taken a twitch in my right thumb and my husband had said over the past month or two I had been jerking a lot in my sleep.  The Dr ordered a brain CT Scan for later that day but also told me I would be going to theatre to have the Hickman line removed as although the infection wasn’t in my body it was in the Hickman line.  Once again I felt like I had been kicked in the stomach I was back to square 1.  I was going to have to put up another fight for the chemo.  B had brought me more clothes etc. up to the ward so she was there when I got back from the scan.  I still hadn’t seen the doctor with the results of my scan when visiting time was over however B told the nurses she was staying with me. A while later I seen the Dr who had instructed to scan. I seen him reading notes and then going into speak to a nurse I was watching them like a hawk.  I had done a lot of that over the past year I would watch doctors and nurses body language or facial expressions when they were reading something to see if I could get an inkling of what they were about to say.  So when the Dr and nurse came out of the office together walked towards my bed pulled the curtain around and sat down beside me I knew this wasn’t good.  He then told me the scan had showed swelling on the brain, which could be caused by an infection however, as my stats were all ok and I was not showing any signs of infection the it was most likely brain metastasis.  As this sunk in I remember Barbara asking what as in a tumour? I looked at her and said yes secondary breast cancer in the brain.

Little did I imagine a few weeks earlier when we were having a great family holiday in the lake district that the worst was yet to come……

 

 

The only thing we have control over in life is our thoughts and our actions.

Have you ever really thought about what control you have in this world? Take any scenario in your head and think what control you have over it.  You either will have no control over it or if you do its because its a thought in your head or an action you can control therefore you can change it at any time. So when the Professor sent the letter to my medical team I had absolutely no control over the situation.  All I had control of was my own thoughts and actions which for 3 weeks would drive me mad with frustration, thinking I and the letter from the  Royal Marsden was being dismissed and that no one would consider the recommendations.  My thoughts created hysteria I ranted to anyone who would listen it had now taken over my life I couldn’t think of anything other than was this nightmare ever going to end?

Three weeks after my visit to London I met Dr J. I will just say that up until the point when I made the decision to go to London Dr J and I had a very trusting patient/Dr relationship. He was the one that diagnosed my Inflammatory Breast Cancer even though I had been dismissed by another Dr.  He organised for me to be transferred to another hospital when I had lost faith in my original one, he acted on my recurrence in January seeking his colleagues opinions on the best option, he reassured me about the surgeon who would do my mastectomy and all through my chemo if I asked for something to help with the side effects I was prescribed it. Unfortunately what I did learn is that seeking a second opinion from another hospital is certainly one way to piss an oncologists off.

As you have probably guessed by now I am not behind the doors about being forward and with three weeks frustration built up and a pissed off oncologist there was a lot of friction at the meeting to say the least.  I do recall my sidekick (who I will now just refer to as B) saying afterwards that at some points during the meeting she “felt like crawling up her own arse” yea I think that was the term she used.  Dr J believed that the visit to the Royal Marsden would put a wedge between the trust that I had with him. I said  setting the letter aside I was a 37 year old women who had two kids at home and wanted to do everything I could to prevent this thing from coming back.

Well I’m not going to go into the detail of the meeting as I and Dr J agreed to put the meeting behind us and some things are best left that way but we did talk for over an hour that day.  I will give him his dues I have never been ushered out of the door or felt that I have been taking too much of his time or felt that he has switched off during any appointments, unlike my first surgeon.  I will never forgot the meeting my husband and I had with him giving me the results of my lumpectomy.  After he had dropped the bombshell that I needed chemo and that I had triple negative breast cancer that was it his time was up, he had said what he needed to and was making that very clear to us by turning around in his chair and shuffling papers in front of him.  People do not realise the lasting impression the simplest of gestures can leave someone with and my impression of him was that he had very little time for his patients. They were just numbers in his clinic get them in, get them out, next please, hit the targets and I’ll get a big pat on the back.

Before I left the meeting with Dr J it was agreed that we would wait and see what the results of my genetic test were which incidentally I had an appointment for the next day before any decision was made about starting a new chemotherapy. I left the appointment more settled, however the looming will I? wont I get it? still there.

The next day I had my genetic testing appointment and met a Genetic Dr who explained everything about genetic testing.  Prior to me going I had to complete a family tree of family members who have or had cancer.  Going through my family trees and talking to family it became clear that in my grandmothers generation and the generations before her cancer wasn’t talked about therefore it was unknown for sure whether it was cancer they had died from.  The Dr explained that it would take 6-8 weeks for my result to come back however she would be in touch when she got the results.

As I was feeling more settled I decided I needed to return to work and I had always aimed to be back to work by May/June 2016 so felt it was a good time to start planning my return.  During my absence from work my colleagues were fantastic.  My Manager had been really supportive while I was off and kept in touch as my boss but also as a friend.  It was really important for me to have ties with work while I was off although I know this wouldn’t be for everyone.  Unfortunately some people do not get the option as I have heard some horror stories of how people being treated by their employers while they are off on sick leave due to cancer.  I was very lucky and got emails, cards, frequent visits and a lot of prayers and to all those people I will be forever grateful.  The social committee had nominated my chosen charity of Inflammatory Breast Cancer Network UK to raise money for throughout the year.  It was therefore much easier for me to make a return to work and decided that I would go back on 25th May 2016.

My Radiotherapy had started in  April and continued throughout May  so as well as going to other appointments I was attending Radiotherapy everyday.  Although the Radiotherapy session itself didn’t take long there was always long delays due to instruments being down or just by the sheer volume of patients which go through the Radiotherapy clinic everyday.  You get a sense of the crisis which is causing so many delays and putting immense pressure on the NHS when you see the volume of patients being treated for cancer on a daily basis.

On my final week of Radiotherapy I seen a Dr who had to check everything was ok with my symptoms.  I remember him looking at the computer screen and saying to me “I see you have had genetic testing, you do know that it is rare to actually have a breast cancer which is genetic? and that you are most likely just unlucky.” To which I replied well then I have been very, very, very unlucky.”

That was the difficulty I was facing with the test result looming.  To me it was a double edged sword as although no one wants to have a faulty BRCA gene as it in itself brings a whole new dimension of issues.  To me having the BRCA gene would sort of explain why I had been so unlucky and give me a sense of well ok then it was going to happen.  So when the phone call came on Tuesday 28th June and the Dr informed me they had found a BRCA 1 mutation it wasn’t the end of the world for me.  I can sympathise with other women who have been awaiting those results who do not have cancer and to hear those words must be horrendous, but for me who had already been to hell and back this was ok for me.  I had received the sword, however I will never know how I would have felt if it had been the other edge of the sword I had received that day.

I have only control over my own thoughts and my actions.

 

 

 

Trip to London

Now being six weeks post op I was starting to panic about my radiotherapy not starting.  After phoning Dr J’s secretary numerous times to chase up the appointment to no avail.  I happened to be in the hospital one day and decided to doorstep her.  I don’t think this is normal practice as there were alot of surprised faces when I arrived at reception and asked for her by name. I think she was even more shocked when they rang her to tell her I was standing at reception.  I had no intention of being angry or cheeky all I wanted was to know that someone was actually looking at my case and referring me to Radiotherapy.  A simple phone call would have sufficed, however when I didn’t get that I did the next best thing and went and asked in person.  She assured me she would get someone to look at it and get it referred that week.  Again I expressed my concern that it was now 6 weeks post op and I would really like to get radiotherapy started.  The following day I got a phone call to tell me I had an appointment with a Medical Oncologist* to discuss my radiotherapy. (*there are different types of Oncologists one specialises in Radiotherapy or Chemotherapy or both).

On Good Friday I had my appointment with the Medical Oncologist to discuss my radiotherapy plan.  As I had a double mastectomy I had been told by Dr J I would receive radiotherapy on both sides which made sense to me.  At this meeting the Dr explained that I would receive 5 weeks of radiotherapy on the left side as well as the collarbone area and under arm which was all standard practice for Inflammatory Breast Cancer.  I was then told that as I had a mastectomy on the right side and there were clear margins between the tumour in the right breast and the chest wall that I did not need radiotherapy on that side.   I remember her exact words to me “I can think of a hundred reasons why I wouldn’t give you radiotherapy on the right but can’t think of one why I would give you radiotherapy on the right.” The words and manner of her really struck me as I was already a bit of an emotional wreck with everything going on.  She also advised me that it would be another 3 weeks before I started Radiotherapy.  This shocked me as I was always under the impression from discussions with my oncologist that I would get radiotherapy on both sides and that radiotherapy should start within 6 weeks of surgery for Inflammatory Breast Cancer.  My sidekick wasn’t with me at this appointment as she was in Donegal on a well deserved break for a few days so I was totally on the back foot with this one. I left the hospital and cried the whole way home worried that by not getting the radiotherapy on the right would increase my risk of a recurrence.

On my way home I went straight to my GP’s surgery as I had an appointment to see her.  When I was called in I burst into tears and told her everything about knowing there were other chemo options, not being entitled to a second opinion on the NHS and the appointment I had just had with the Medical Oncologist.  She calmed be down said she would get a referral letter sent to the Royal Marsden, speak to my Oncologist about Radiotherapy and upped my dosage of anti depressants to help me deal with everything.

I received a phone call the following week from the Royal Marsden to advise that a Professor in Breast cancer had been appointed my case and that I should attend a meeting with him on the 15th April.  Over the past week I had developed a new rash on my Inflammatory Breast Cancer side.  Not knowing whether it was anything to be concerned about I left it a few days then rang the breast care nurse.  I explained to her what the rash looked like then emailed her a picture.  After speaking to Dr J she told me to come to the breast clinic to get it looked at and potentially a skin biopsy.

At the breast clinic I met the Registrar who had assisted my surgeon with my double mastectomy.  He was again really nice and told me he had done the mastectomy on my right side and my surgeon had done the one on my left side.  I told him how pleased I was with the surgery as it was really neat.  Another surgeon came in to assess the rash pointing to 3 areas he wanted the biopsy taken from then left the room as abruptly as he had entered it.  Another of my experiences of surgeons and their tolerance of time for their patients.

It became evident that everyone was aware of my forthcoming trip to Royal Marsden.  I felt like I had to explain my reasoning to why I felt the need to go.  I told them the fact that my cancer hadn’t responded to the chemo I had to give myself peace of mind that I was doing everything I could to prevent this from coming back.   They said they understood and that it was totally within my right to seek a second opinion.  They told me that I wouldn’t have the results of my biopsy back before I went to the Royal Marsden the following Thursday but did tell me that I was getting radiotherapy on both sides as Dr J had requested that due to my recurrence during chemo he felt it best that radiotherapy was needed.

The following Wednesday evening my sidekick and I boarded a plane to Gatwick.  We would stay at the Premier Inn at Gatwick airport then get a taxi to the Royal Marsden to meet the Professor the next day.

My appointment was for 3pm so we arrived in a very busy hospital and were directed to the registry office were I had to pay the money for the consultation. We were then directed into a quieter end of the hospital with free tea coffee and mints.  Oh we were definitely in the private clinic now.  After a period of waiting I was taken in and introduced to the Professor and a Breast Nurse.

He went over my diagnosis and after a long consultation which I will not bore you with he said I said business but to sum it up I left that office feeling so relieved that finally someone was talking the same language as me.

He recommended that I should be genetically tested as my cancer was behaving like a BRCA mutated cancer and the fact I had family history of breast cancer, was under 40 when diagnosed myself and was Triple Negative all factors which would imply I had a genetic mutation.  He also recommended that I should be given a platinum chemotherapy which had been proven lately to work better with Triple Negative cancers and BRCA mutated cancers.  He advised me that he would write a letter to my Oncologist with his recommendations. We left the hospital and headed to the airport in a taxi.  I phoned the Breast Care Nurse to see if the results of my skin biopsy were back she told me they were and that everything was ok there was nothing sinister.  At the airport I sat in the bar and had a large glass of chardonnay as I felt such a sense of relief for the first time in months.

The following day the letter from the Royal Marsden was faxed to my Oncologist and GP and a copy emailed to me.  Seeing the Professors acknowledgement of the complexity and aggressiveness of my diagnosis really brought it home to me what I had actually been through in the past 8 months.  However seeing his recommendations gave me so much hope that I would definitely being doing everything in my power to stop this from coming back.

Was I wrong there? once again it wasn’t going to be as simple and straightforward as I thought and I was going to have many, many arguments before I could get a chemo which could potentially stop this beast from coming back.

 

 

 

 

Hope the only thing Stronger than fear

Ok so unfortunately getting a second opinion at the Royal  Marsden wasn’t going to be as easy as I thought.  As I lived outside the NHS England jurisdiction I was not entitled to a NHS second opinion in England (Royal Marsden is within this) only within my own NHS jurisdiction which I was offered. 

Dr J rang me to say he could refer me to someone within our own Health Service for a second opinion.  I talked to him about the advise I had received from our Specialist doctor from MD Anderson Cancer Centre through the IBC Network.  She had suggested that I could be offered a Platinum chemotherapy which in recent studies had shown to be more effective in Triple Negative and BCRA cancers.  On this note I asked when I would be getting genetic testing as it was now 3 months from being referred.  I asked if I could pay private for this if it was going to make it any quicker.  I was really starting to believe I had a BRCA genetic mutation as my cancer had been resistant to the chemo’s offered to me which is a factor for BRCA mutated cancers.  Yes I could pay private however this would be in the region of £2K.

As my Inflammatory breast cancer was ER+ (fed on oestrogen) I had been prescribed Tamoxifen to reduce my Oestrogen levels.  However I had the Mirena Coil which produces Oestrogen.  I asked DR J should I have this coil in? as surely it was contradicting the reason I was on Tamoxifen.  He advised me when my coil was up for review I should get it changed to the copper coil.  I told him I had an appointment the following week so would get it changed then.

With a lot to think about in relation to my second opinion I told him that I would let him know by the end of the week what I intended to do.  The following day I rang the Royal Marsden and asked how much a private consultation for a second opinion would be and what the process for getting one was as I had been advised by my oncologist I was not entitled to one through the NHS.  They advised me that my GP could refer me and how much it would be for a private consultation which was less than £1ooo and what I thought would be money well spent to put my mind at rest.

With that determined I had made my mind up I had to have this independent second opinion therefore I rang to let Dr J’s secretary and told her I was going to Royal Marsden privately.  From talking to our Dr in America and the extensive research which I had done  I knew there were other chemo options  which may be more targeted on my cancer as I was Triple Negative and potentially had a BRCA mutation. I needed peace of mind that I was doing everything possible to stop this cancer from coming back however I was also willing to accept if the Royal Marsden said no there was nothing more I needed that I would move on with my life.

Fortunately my husband kids and I had a weekend in Alton Towers arranged so that took my mind off everything for the weekend.  The weekend had been paid for by the Willow Foundation a Charity founded by Bob  Wilson (former Scotland International and Arsenal player) and his wife Megs as a lasting memory to their daughter Anna who died of breast cancer at the age of 31.  The Willow Foundation provides special days to make special memories for young people (16-40 year olds) who are seriously ill at the most difficult times.  One thing I have learned is the array of charities available which I had never heard of before or was totally unaware of what all the work they did.  I found out about the Willow Foundation through another charity The Cancer Fund for Children who had been out to visit me after I had been told how they support kids through a cancer diagnosis. I must really praise these charities for the work they do and the opportunities they offer families going through a cancer diagnosis or other serious illnesses.

I also assumed the Cancer Fund for Children was a charity for children with a cancer diagnosis which I believe initially they were.  However they also support families and children who are affected by cancer.  As I found out about both these charities by chance I ensure to tell people  I come into contact with in hospital waiting rooms, cancer units or out and about the work that these charities do and the support they can provide them and their families with. It is amazing how many people don’t know about these , however its probably a case of until you or a family member are affected by something like a cancer diagnosis we all carry on in our own we bubbles.  Yes when we see the charity tins and street collectors we will always give but we don’t really get a full understanding for the work that these charities do until we need them which is sad because we don’t then appreciate the work they do for others until we need them ourselves.

Other local charities which have supported me with various services are the Friends of the Cancer Centre, Macmillan, Cancer Focus, Prettynpink, Look Good Feel Good charity and the Citizen Advice Bureau.  I just hope that everyone who is affected by cancer gets access to all these fabulous charities although I do fear its a case of if you don’t do your own research or ask then the information about services provided by local charities isn’t widely advocated, or its perhaps more inline with my opinion that the whole cancer service is disjointed with no one taking a holistic view of patients care from diagnosis to life after cancer.  Although I do know that for unfortunate patients who do not get the opportunity to have life after cancer this is were the hospices step in and from what I have seen they are worth their weight in gold. .

In relation to a breast cancer diagnosis you see the Consultant who gives you the bad news. Then you have the Breast Care Team who will be your point of contact during surgery.  Then you are referred to Oncology or vice versa for those who have chemo first.  At this stage you see an Oncologist and chemo nurse every 3 weeks.  You are then referred for Radiotherapy and will see radiographers everyday with a visit by a doctor mid to end of treatment.

When this treatment is over women are sent away to get on with their lives, many women at this stage feel abandoned. For months patients have had a comfort blanket of being seen within the medical profession regularly.  The final day of radiotherapy and the days to follow for many women are feelings of fear of their cancer coming back and an abrupt abandonment by the people that have cared for them over the past number of months.

Although I availed of counselling services prior to my mastectomy my counsellor advised me that the end of treatment often triggers the reality of what you have been through.  Its like we have been running on adrenalin for months and then with no hospital appointments or milestones to aim towards all of a sudden there’s time to stop and think and at this stage the enormity and trauma of what we have been through hits us like a brick.  I know there are charities which can help so many women at this stage and I just want to make sure every women is aware to get the help that is available but also let them know that they are not alone when they feel this abandonment.

I learnt a mantra being part of the Inflammatory Breast Cancer Network and that is “Hope Always”.  There has to be hope or we couldn’t get through our day.  It can be as simple as  hoping its going to be a dry or sunny today, or hoping to get a holiday booked, or get a few days off on leave, I hope I don’t take a cold.  Well to get out the other side of a cancer diagnosis you have to have hope otherwise there’s no point going on.  If we didn’t believe that we were going to get over the nausea and sickness, the sore mouth, the terrible  pains and everything else we endure and that one day it will all be over and we can get on with our lives.  How could we ever pull ourselves out of bed to get through another day if we don’t have hope after all I believe hope is the only thing stronger than fear.

 

 

.

Stage 2 of my journey

Double Mastectomy February 2016

I had to be in hospital for Wednesday 17th Feb as I was having my double mastectomy the following day. So of course me and my sidekick headed to the hospital as I had to be there for 5pm.  On the way I said “we better stop of here at McDonalds in case I don’t get my dinner.” so we stopped and I got a wrap and we both had a coffee.

I was admitted into a side ward the nurse did my admission just as dinner was coming around.  So I obliged the offer of dinner although Id say prisoners had a more nutritional meal than what was on offer in the hospital that night, sausages potatoes and carrots.  As I was eating my dinner the Registrar came in to introduce himself and tell me he was assisting my surgeon the next day.

As we got talking about my diagnosis I told him I had requested genetic testing and because I had done so much research about my diagnosis and genetic testing he said he was delighted to find someone who was interested in it as he had just done his Phd on the subject.  Before we knew it we had been chatting for 45 minutes or so.  Just as he left the auxiliary came in to collect my plate which I had not finished, however as it wasn’t very appetising I passed her the plate.

Well if looks could kill I would have dropped on the spot.  My cousin was starving and had been eyeing up the sausage left on my plate waiting for the doctor to leave before eating it.  However as Id just told them to take my plate the sausage was gone!!!! Ooops!! lol!. I will never live that down in her eyes but we do laugh about it.

All my prepping was done through the night and the following morning at one stage they had to withdraw blood from my foot as they couldn’t get any veins in my arms, not a pleasant experience.  I was taken to theatre at 2.30pm and had a chat with the registrar I had talked to the night before.  Again they explained to me they would do a double mastectomy and remove all the lymph nodes under my left arm as there was cancer in one lymph node that we knew about.  The lab would test them all to see how many had cancer in them (the more lymph nodes with cancer the more the cancer had spread).

They also explained that they would remove two lymph nodes from my right side and test them while I was under general anaesthetic.  Do you know that your lymph nodes are like a ladder? therefore if  no cancer is found in the first two then there would be no chance of the cancer being in any lymph nodes further up.  That is why they will take the bottom two if there is cancer in them they will remove them all, however if there is no cancer then they leave them.  I don’t know whether mentioned this when I had my lumpectomy in August but I had two lymph nodes removed from my right side then too but no cancer was found in them.

After more checks I was put to sleep.  I don’t mind general anaesthetic and have never had any issues with being sick or nausea with it.  It is worrying though to think how anything could be done to you while you are under the knife.  Someone told me recently that you talk while sleeping under general anaesthetic so I’m sure if that is true the theatre staff have to listen to some sh1t.  I dread to think what I would say, although its probably the possibility of passing wind which I would be more mortified about!

I woke up in recovery and remember seeing the clock at 5.45 I slept off and on until 8.45pm.  I got more pain relief and they allowed my husband into see me for a few minutes.  I returned to the ward at 11pm and was given tea and toast, how come that tea and toast you get in hospital is always so good?  I remember the tea and toast you get after labour it was bliss.

Friday was a bit of a blur on morphine, my husband came to see me.  I had two drains coming from the wounds but they told me I could go home with the drains and go back to the ward 5 days later to get the drains out and the dressing changed.

Saturday my husband, the kids and my cousin came to collect me from the hospital.  The nurse had come in to help me wash and get into clean PJ’s so I was sitting on the armchair when the kids came in.  Again they were a bit shy at coming in the door obviously not knowing what to expect.  I carried on as normal and showed them the drains I would be carrying about for a few days.  Everyone got everything packed up for me and we headed home.

It was so good to be home I was propped up on the sofa with lots of pillows my drains sitting on the floor beside me and was waited on hand and foot.  I kept on top of the pain relief but at night it was so hard to get comfortable in bed as I had to lie on my back all night I woke up stiff and sore.

On Sunday night I wanted to get washed so my husband and cousin helped me get undressed. As we tried to get my PJ top off I took a pain like an electric shock under my arm and let out a massive squeal.  The kids had been downstairs, however on hearing me squeal had run upstairs to see what was wrong.  I had scared the wits out of them the poor wee souls, I explained to them it was ok I was just trying to move my arm but their wee faces were so shocked.  My cousin had to shower me for the next few days as I held my drains out of the water.  She has told me I owe her big time and likes to remind me that I will have to repay the favour when we are old…. although she is 10 years older than me which I like to remind her every now and then.  Oops did I say that out loud? oh dear.lol

On Wednesday we went back to the ward to get my drains out and the bandages changed.  They took off the padded bandages and just left the wounds with paper stitches which they told me I could take on in a few days.  I remember seeing the wounds for the first time and couldn’t believe how neat it was, I was well impressed.  Doing my research beforehand I had seen some horror pictures so just didn’t know what to expect although Dr J had assured me that the surgeon was an excellent surgeon.

With inflammatory breast cancer there is a high risk of recurrence within the first two years, therefore it is not recommended that you have reconstruction immediately.  So I was now boobless and would be for another 2 years, but that was a small price to pay if it reduced my risk of having breast cancer again in the future.

Two weeks after my surgery I had to go back to meet my surgeon to get the results of the pathology report.  This is the tests the lab do on the breasts to analyse the cancer see if it was ER+ PR+ HER+ etc. and determine how many lymph nodes were affected.  One thing I have learnt about surgeons is they give you as little of their time as possible. They will give you the facts then leave the room and let nurses deal with the consequences of what they have just told you.

I remember my husband and I being taken into the room by the breast nurse the surgeon came in a few minutes later.  He explained that the surgery went well and pushed a piece of paper across the coffee table to me saying  “here’s the results of the pathology.  there was no evidence of disease in the left breast (inflammatory side excellent news that means the chemo worked a treat with it and reduced the tumour from 10cm+ to nothing).  There was cancer in two of the 15 lymph nodes removed on the left side this cancer was slightly ER+  ( feeds on oestrogen).  There was a 1.8 cm grade 3, Triple Negative (doesn’t respond to any hormones or proteins) tumour found in the right breast.” (this was the lump I had discovered in January).  When he referred to the grade 3 tumour he said “but that’s the same as you had before”, just oh that’s ok then you have been here before sort of thing.  I was shocked he had just told me I had a grade 3 tumour removed but was making light work of the situation.

I was then given a letter for my GP which he told me also requested Tamoxifen to be prescribed for 5 years (for inflammatory side) and that Oncology would see me in 3 months.  I asked him about reviews with him, when would he see me again?.  I will never forget his words to me yes it was true but they struck me like I had been kicked in the stomach.  He looked at me and said “but Lynette you don’t have any breasts so you won’t get reviews at the breast clinic, you don’t need mammograms”.  At which stage I felt like punching him in the face his patronising face at that!!  He said “well if you have no more questions I will leave you in the capable hands of Laura”  He got up shook my hand at which I couldn’t even look at him he then said “well I hope I never have to meet you again, hahah”  Yes I know he meant having more surgery but at this stage I already thought he was a patronising prick so his joke didn’t go down too well in my eyes.

When he left the nurse asked me what had I not got out of the meeting as she knew from my body language and questions that I wasn’t getting what I wanted.  I don’t know whether I have explained this before but I like detail when it comes to my medical diagnosis and my treatment plan.  I know some women like to leave the detail to the doctors but I would urge anyone to take control of their treatment plan.  I have requested a copy of all my medical notes, everyone is entitled to have their own notes so don’t be afraid to ask for them.  I like to read the pathology reports analyse what they say and then ask questions of anything I don’t understand.

I have spent many months researching my diagnosis of inflammatory breast cancer, ER+ and triple negative types.  There are many support groups on Facebook which are specific to the type of cancer you have.  As I said before I had access to an excellent support group through the Inflammatory Breast Cancer Network.  We have a fantastic research doctor who specialises in Inflammatory Breast Cancer and Triple Negative breast cancer and works in the MD Anderson Cancer Centre in Houston Texas.  Anything we need to know about our diagnosis, treatment plans, trials etc. we can ask and she will provide us with clear fact.  She does not fluff it up, if its not good she will tell you, however she will also do everything she can to give us a clear steer on what we can talk to our oncology teams about.

I believe it is vital that cancer patients are armed with as much knowledge as possible to be in a position to ask questions, challenge and even make suggestions to their medical teams.  We have to stop putting Drs, Oncologists, Consultants and Surgeons on pedestals.  Perhaps in our grandparents time this was so, however when we teach our kids that everyone in this world is equal, why should we feel inferior to these professions.  I am in no way undermining the fantastic jobs they do and completely respect what each and everyone of them have done for me, but everyone needs to feel confident that they can ask questions and not be undermined or not listened to.

Just by being a member of a support network on Facebook, I have access to 120 women’s diagnosis and treatment plans in hospitals all over the UK including some top cancer units.  Therefore if there is something being done successfully somewhere else in the UK why would we not suggest it to our medical teams. Whether they can implement it is another matter and one which is a bee in my bonnet and is a frustration for the medical teams as everything is a political football and takes years to get a policy written which would allow them to do something new.

I explained to the nurse that I like detail and that I felt like I was being dismissed by him.  She explained that yes although I wouldn’t be getting annual mammograms in actual fact I had to keep a check along my scar line and if I noticed any new bumps, lumps rashes or anything out of the ordinary I should contact the breast clinic.  She gave me a folder with leaflets in it about moving on after cancer. I then asked her for a copy of my pathology report. I could see she was taken aback by this so I just said “I have a copy of all my notes, I like to read them in detail”.  She went to speak to the surgeon who agreed I could get a copy.

My husband and I walked up the corridor to meet my cousin.  I was in a bit of foul form so my  husband told her about the meeting and said he was embarrassed at one stage because I switched off to the surgeon during the meeting and my body language was really telling that I was peeved off.

In the car I started to read the Pathology Report and analyse what it meant.  I said “I wonder will I be getting anymore chemo” to which my husband and cousin looked at me confused and asked why I thought I needed more chemo.  I said it was because they had removed a grade 3 tumour.   I knew they didn’t understand my concern.  The next day I rang Dr J and asked him would I be getting anymore chemo.  He said no.  I said well you removed a grade 3 tumour last September and I was told because it was a grade 3 tumour I needed chemo so why am I not getting more chemo?  His reply was “Lynette, because you have had it and it didn’t work.”  I said “yes I’ve had one kind and it didn’t work why not give me something which does work”? He told me that it wasn’t normal practice to give more chemo in this setting i.e. until there is more cancer then they wouldn’t give more chemo!

For days I ranted about this and know that my family couldn’t understand why I was getting so frustrated about it. As far as they were concerned the cancer was gone so why would I want more chemo?  To them it was good news which yes to me the inflammatory cancer treatment had been a success, great news, but the recurrence I had in January was an aggressive tumour.  Yes it had been removed via the mastectomy but I felt I needed to blast whatever cells had been left from mastectomy with a different type of chemo, hopefully one which would work for me.

Finally my family understood the reasoning behind my madness and agreed they would fully support me in whatever I decided to do.  Through my support network I was advised that I was entitled to a second opinion from another medical team.  After mulling this over for a few weeks afraid that I would step on peoples toes or offend someone, I finally decided that this was my life vs professional judgement.  It was too important a decision and major consequences for me to be afraid of upsetting people. I knew if I didn’t get the second opinion I would always wonder if there was something else I could have had or done to prevent the cancer from coming back.  So I phoned Dr J’s secretary and left a message that I wanted a second opinion at the Royal Marsden Hospital in London.

and so the story continues………