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 […]
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. Secondhope.co.uk 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.
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.
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……
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.
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.
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.