Thursday 1st July 2021
Pre-op telephone appointment with the Breast Unit
Not yet having heard anything from the hospital, and time marching on, I fully intended phoning them today to find out what was going on. The nurse had promised a letter with details of all upcoming appointments and what I should do to prepare, and when. The operation is a week tomorrow and I was beginning to get concerned.
However, before I could do this, they phoned me, to arrange a telephone appointment with the nurse at 1 p.m. today.
She rang as arranged. Her name is Kate and she is Assistant Practitioner at the Breast Unit. She said she would be posting me all the written information today and I should get it either tomorrow or on Saturday.
She said a further telephone appointment had been arranged for me tomorrow at 10.15 a.m. with one of the Day Surgery nurses, when further details would be discussed, for instance when I should stop my anticoagulant medication, whether I would require pre-op energy drinks, when to stop eating, what arrangements could be made about my wheelchair, and any other necessary preparations.
Kate told me that she would be phoning the Covid Unit, based in Newton Abbot, to make an appointment for me to have a swab a couple of days before the operation, after which my hubby and I would have to self-isolate. I have misgivings about the procedure, which we discussed at length; she could not tell me what kind of test would be conducted, and I would be able to get the information from the Covid team when they rang with my appointment. I asked what would happen if I refused the test; would my operation not go ahead? She said it was necessary to have the test before the operation; this was hospital policy. I said that if I had to have this swab up my nose, I would only give my consent under duress. She said that they were not permitted to do anything without my consent, and it is possible that I might be able to have the throat swab only, but to talk to them at Newton Abbot about this. She said she would make a note of this on my records. We went on to have quite a long discussion about Covid in general, and how this has been handled by governments, and she agreed that it was very concerning. I gave her a couple of web addresses to look up with highly informative videos which have been banned from YouTube and other social media, and doctors and other professionals worldwide who have been systematically censored and silenced, and their reputations trashed, for expressing concerns. She wrote these sites down and said she would look into it.
Regarding the day of my operation, Friday 9th July, she told me to dress in loose, comfortable clothing, and to bring an overnight bag just in case anything went wrong and I needed to stay in; also, if I had my washbag with me, I could freshen up after the operation if I wanted to. I had intended leaving my usual emergency hospital kit on the bed, ready for my hubby to bring in if necessary, but this is a better arrangement. I never go anywhere without my emergency stoma kit anyway. She also suggested I brought in a dressing gown and slippers because I’ll be in a hospital gown and this will be more comfortable for me. Also, it would be a good idea to bring a book, because I’m in for a long wait on the day!
My hubby has to drop me off at 9.30 at Nuclear Medicine, where they will inject my breast with the radioactive material in advance of my operation. This procedure will take about half an hour, after which I will go to Surgical Admissions. My hubby can’t come in with me. I shall phone him later in the day when I am ready to go home.
I will then be subjected to a long wait, because depending on the surgeon’s list, my operation will either be at 1.30 or 4 p.m. By this time I shall be feeling very hungry indeed! During this waiting period, the nurses will do various checks such as my blood pressure, and at about 1 p.m. the surgeon will come in and have a chat with me, and mark the operation site etc.
Kate told me that the surgeon, Mr. Memon, has been operating at the hospital for many years and is very experienced and an excellent surgeon. She has worked in theatre and has seen him at work. She says I shall be in very good hands. I told her that I was more than satisfied with all the treatment I had received at Torbay Hospital – and also how both my parents were treated at the end of their lives. This hospital has won the Hospital of the Year award and I am not surprised!
Kate says that she will come down sometime during the morning while I am waiting, and bring several different support bras from the Breast Unit and get me fitted up with one. I am going to have to wear this night and day for 4-6 weeks, so she will be sending me a further one in the post so that I can have one on, one in the wash! I have to pay for these, but she said not to worry about it until later – I can settle up with them when I have my follow-up appointment at the Breast Unit three weeks after the operation.
The operation will take between 1 1/2 and 2 hours, and afterwards, when I am sufficiently recovered, I can get dressed, putting on the support bra. I have to keep the wounds dry until after the telephone follow-up appointment on Monday 12th July at 9 a.m. when they will check that I don’t have any signs of the wounds being infected etc. If I have any problems during the weekend I am to phone them immediately and I may need to go in. If everything is OK, I will be free to remove the dressings myself, after which I shall be free to shower. She is going to send me more information in the post today about post-operative restrictions.
I will have to wear TEDs (support stockings to prevent DVTs) for 2 weeks, and the support bra day and night for 4-6 weeks. I must take it easy for 2-3 weeks, during which time there is to be no heavy lifting, repetitive movements (e.g. ironing) or cleaning etc. Too much of the wrong sort of activity can cause a build up of fluids, which they are keen to avoid. My hubby is going to be around to help me during this time. Kate is also sending me a booklet about exercises I must do to keep my shoulder moving, as it could easily stiffen up after the Sentinel Node Biopsy.
Three weeks after the operation, I shall have another face-to-face appointment with Mr. Memon at the Breast Unit, to check on my recovery, and to discuss the results of the lab investigations. They will be able to tell me whether or not I am going to require chemotherapy. They will presumably also refer me to an oncologist to arrange for my radiotherapy and hormone treatment; I don’t think this will begin until about six weeks after the operation.
So it’s all systems go now!
Later…
A little while after Kate had rung off, the Covid Unit in Newton Abbot phoned me to make an appointment on Wednesday 7th July, two days before my operation. This will take place at 11.30 a.m., and I was surprised to hear that it is taking place at Newton Abbot Racecourse! I had expected it to be at the hospital, at least. She told me that when we drove through the gates, there would be signs directing us to Covid testing, and we would be shown into a parking bay and someone would come out and do the swab. I expressed surprise at this – were they going to do it with me sitting in the car? I find this deeply shocking. Surely any invasive medical procedure (which is what this is) should be conducted in a clinical setting? What about hygiene, and the possibility of contamination? She said this was the way they did it.
I asked what form the test would take, and she said they would swab inside my nose and in my throat. I asked her how far up my nose the swab would go, and she said, “quite far – as far as possible.” I asked her point blank if this was the PCR test and she seemed vague, and reluctant to answer, but eventually confirmed that it was. I asked if I could have the lateral flow test instead but she said that this was the only test they did. I told her that I would only give my consent to this procedure under duress because without it, my cancer operation might not be allowed to go ahead. I would consent to the throat swab, but not the much more invasive nasal swab. To this she replied, “Would you permit it if we promised to be really gentle?” I said no. Surely they have a responsibility to be “really gentle” with everybody! – especially given what they are actually doing (read on). She said she would make a note of my concerns, but to mention it to the person doing the test on the day as well.
The answers that she gave to my initial question about the nature of the test were vague and placatory; this does not, in my opinion, constitute informed consent, if they are not spelling out to people the risks involved in this invasive procedure, or the exact nature of the test and what it was originally designed for.
This is actually illegal. At the end of World War II, the Nuremberg Trials of Nazi war criminals established the Nuremberg Code which is the basis for informed consent, in order to prevent the kind of criminal experimentation on human subjects carried out by Dr. Mengele in Auschwitz Concentration Camp from ever happening again. These days, nobody is permitted to conduct any kind of invasive medical procedure, whether it be a swab or an injection or anything else, without the informed consent of the person involved. I am deeply concerned that in the current climate, these issues are being conveniently swept aside, and the majority of people are not raising any objections at all – presumably because they are ignorant of the facts. This is a state of affairs that has been carefully orchestrated by governments and the mainstream media to generate fear in the population and to make them compliant.
On the one hand I do not blame the individuals involved in carrying out these procedures because they only know what they have been told by those who have trained them, but on the other hand, to return to the Nuremberg trials, “We were just obeying orders” is not deemed a legal defence. Ignorance is no defence under the law, and anyone carrying out these procedures has a duty and responsibility to be fully informed about what they are doing to people, and why. Those who are rolling out this whole programme, and training the people to carry out these tests, are very remiss in their duty by concealing the facts.
The same lack of information is going on at the “vaccine” centres as well, with people are being kept in the dark about the dangers, and are not being informed that this is not actually a vaccine at all by legal definition, but an experimental genetic modification procedure which has been banned in the past, never getting beyond the animal experimental stage because it was deemed far too dangerous for human use. We need to wake up, and become better informed; the authorities are not giving us the full information, and denying us our legal right of informed consent, and we have to turn to our own resources in order to do our own research. The truth is out there, but you have to dig for it. The very fact that there is blanket censorship over this whole issue should be enough to ring many alarm bells.
Regarding the PCR test, the area they swab is the mucous membrane in the nasopharynx, just beyond which is a very delicate little bony structure called the cribriform plate. This separates the nasopharynx from the brain. It is only 1 mm thick and is porous, and the olfactory nerves pass through these tiny holes into the brain. Any injury to this area can cause a leakage of cerebrospinal fluid into the nasopharynx and can cause permanent nerve damage leading to the loss of the sense of smell. It also opens an avenue for infection to enter the brain, with potentially fatal consequences. This has actually happened a a result of this so-called Covid test. I am concerned that the people conducting these tests may not even be medically qualified, but enthusiastic amateurs who receive minimal training to carry out the procedure. I have tried to find out online whether the person who will be testing me on Wednesday is likely to be medically qualified or not, but I can only find out the most basic of information about the tests – just information about the venues, and the usual towing the party line about how marvellous and necessary they are etc. I am going to have to ask the individual on the day.
There is also talk of material from the end of the swab remaining in this delicate area and causing problems.
Kary Mullis, the inventor of the PCR test (and winner of the Nobel Prize for Chemistry as a result) said that this test was never designed as a diagnostic tool and cannot reliably confirm whether or not an individual has any infectious disease agents present in their body. It was designed to detect traces of DNA in archaeological samples. It has been proved to be extremely unreliable as a test for Covid, and throwing up far too many false positive results. I am not happy about having the test at all, knowing what I do, and I am certainly not prepared to submit to the highly invasive and potentially dangerous nasopharyngeal swab.
Anyway, on Wednesday, as this woman suggested, I shall inform the person doing the test of my misgivings and request that they swab the oropharynx only. We’ll see how that goes down.
Friday 2nd July 2021
Pre-assessment phone appointment with day surgery nurse
At 10.15 a.m I was due for my telephone pre-assessment appointment with someone from the Day Surgery Unit; they actually phoned me at 10.45 a.m. This was a very short appointment; she said she had all my notes in front of her and was aware of my current state of health and history. During this time I was able to ask various questions and to clarify several details in advance of Friday.
(a) I am to stop my rivaroxaban (anticoagulant medication) two days before the operation, so I am to take the last one on Tuesday.
(b) I asked about energy drinks – would it be necessary for me to have these before the operation, as I had had on previous occasions? She said not in this case. I am glad about this because they are extremely sickly, sweet and gloopy!
(c) I asked when I should stop eating. She said I must have nil by mouth for 6 hours prior to a general anaesthetic, so it would be fine for me to have a light breakfast at 6 a.m. I told her what I usually have (my overnight oats with fruit and yogurt) and she said that would be all right. I am to continue to drink water throughout the period up to the operation.
(d) We discussed arrangements about my wheelchair. Along with my clothes and other belongings, this would follow me from Surgical Admissions and eventually end up with me when I am recovering in the Day Surgery Unit. I explained to her that the wheelchair has a power-assist system, and in the past, people who were ignorant of its workings have pulled on the control switch, thinking it was the brake, and damaged it, and I did not want this to happen again. She told me to inform the nurses on the day and make sure they were aware.
(e) I wondered if I would need daily fragmin (anticoagulant) injections after the operation, but she said that in this case they were not required. That is a relief – they are extremely painful!
(f) Asking about any other preparations, she said that on the day, I should not wear my hernia support pants because I should avoid all tight clothing. She told me to wear loose, comfortable clothing so that I would not have to struggle with anything getting dressed afterwards.
(g) I asked what time I was likely to return home, and she said that if my operation was at 4 p.m., I couldn’t anticipate being home before 9 p.m., and if it was at 1.30, I would still not be home before late-ish evening. When the post came, and I received the information detailed above, the time of the operation was confirmed for 12 noon, so I may be home around 8 p.m. of thereabouts.
(h) I asked about valuables, and how I didn’t want to bring anything, including my phone. She said the phone would be fine – everything will be stowed safely in a locker during the operation, and I will be reunited with my stuff immediately afterwards when I am in recovery, so that I will be able to phone my hubby and let him know I am OK, and later, that I am ready to be collected.
She checked that I’d got my Covid swab booked. I told her this was happening on Wednesday. I did not go into details about my misgivings regarding the PCR test; I had already spoken to Kate about this and there should be a note in my records to the effect that I am willing to have the oropharyngeal swab only. She did not comment on this.
It’s going to be a long day, and I shall be very hungry by the time I get home! It probably wouldn’t be a good idea to eat a heavy meal late in the evening, so I am planning to take some soup out of the freezer in the mornng, to have before I get myself tucked up in my own bed!
Later, after this phone appointment, I received several letters in the post under one cover from the hospital, with appointments as follows:
(a) The time to turn up at Nuclear Medicine on Friday 9th.
(b) The time of my operation on 9th – now confirmed for 12 noon.
(c) A phone appointment with the Breast Unit on Monday 12th July at 9 a.m. to check on the wounds and my general progress.
(d) The follow-up and results appointment at the Breast Unit on Thursday 22nd July – time to be confirmed.
After this I phoned the Breast Unit and left a message for the nurses, saying that I had received this information, but not the promised booklet about the shoulder exercises. I thought at the time that the information had come from the Breast Unit, but later it transpired that it had come from the Day Surgery Unit in the main hospital.
Saturday 3rd July 2021
Today I received the promised information from Kate at the Breast Unit, which showed that the material I received yesterday was not from her. She sent me a pre- and post-operation checklist, explaining what to expect on the day, and afterwards. It also contained clothing advice, prohibitions against lifting and repetitive movements and so on, and also some notes on what to expect regarding my wounds. It alo detailed possible adverse reactions and what to do about them.
Also enclosed was the booklet about the shoulder exersises that she promised to send me. I have been practising these in advance so that I am familiar with them when the time comes. They are very gentle and easy to do. For the first week there are a few basic exercises, but after that there are some additional ones which stretch one a bit further. It is recommended to keep up with these long-term, particularly if one is having radiotherapy which can cause the shoulder to stiffen up. It is very important to keep it moving to prevent the build up of fluid and other problems. It is a balance between these gentle, controlled movements carried out three times a day, and not doing too much as regards normal everyday activities. This way, one is more likely to heal more quickly and avoid unpleasant adverse reactions.
Wednesday 7th July 2021
I had a bad night last night, with very interrupted sleep and disturbing dreams. I have to say I have been far more concerned about the issues surrounding the Covid testing than about anything else, and have been praying for wisdom. I know that I am right to express my concerns about the whole subject of Covid because there is a massive propaganda campaign going on and one only has to dig a little below the surface to find many inconsistencies and strategies to instil and whip up a climate of fear, and an understanding of what is really going on in the world today. There are times when one must speak up.
This morning we went to Newton Abbot so that they could do the PCR swab. A strange set-up, sitting in the car in an improvised parking booth. I had a conversation with the person doing the test (she had on a green nurse’s uniform with NHS badges, so clearly a professional and not a volunteer, which was reassuring) and expressed my misgivings about the reliability of the PCR test, and that I was submitting to it under duress because without it, I would not be permitted to have my cancer surgery on Friday. I also expressed my concern about the nature of the test and how invasive it was. She said she had never had any reports of adverse reactions. I asked if I could have the oropharyngeal swab only, but she said no – hospital policy was to have both nose and throat. She said it was my choice whether or not to go ahead. I said that it wasn’t really any choice at all because I clearly needed the cancer surgery. In the end I submitted, but again stated for the record that it was under duress, and I was far from happy with the situation. She accepted that, and went ahead. The mouth swab was no problem but the nose one was pretty uncomfortable; at least she was quick and it was soon done. I can still feel the uncomfortable sensation in my nostril.
She told me that if I did not hear anything from the hospital, the result was negative. If it came back positive, they would postpone my surgery until I had had a further test which came back negative – this further test would probably take place 10-14 days later. She said she thought I would be fine, and asked whether I had any symptoms, to which I replied in the negative.
So now we wait. Only two days to go now.
Thursday 8th July 2021
The day before my operation.
I have been on tenterhooks most of the day, waiting for the phone to ring to say that I had a positive Covid result and my operation would have to be postponed. I am completely symptom-free and rarely see anyone but my hubby, who is also perfectly fine, so if it had come back positive, I would have to conclude that it was one of the infamous false positives!
Anyway, no such phone call came, so I am in the clear, and everything can go ahead tomorrow as planned.
This morning the phone did ring, and it was the hospital, and my heart was in my mouth! It was Kate, the nurse from the Breast Unit – she immediately reassured me that there was nothing wrong, but wanted to make arrangements about my bra fitting tomorrow morning. She asked if I could make my way up to the Breast Unit after my appointment at Nuclear Medicine, but I said I could not, as my hubby would be dropping me off, and it was too far for me to manage to get there on my own. (It’s also at the top of a hill!) She said that was fine, and she would come down to Surgical Admissions as originally planned.
We have arranged that when I arrive there, I am to ask the receptionist to phone the Breast Unit to tell them that I’d arrived, and that Kate could come down. That will save her some time.
While we were on the phone, we talked about sizes, so that she could bring down something appropriate for me to try. I had a tape measure on my table so I was able to measure myself then and there (I had no idea what size I was these days, since losing all that weight!) and she now has a better idea.
I said we might not have much time because according to the letter, my operation was set for 12 noon. She said I wouldn’t actually be going down to theatre till about 1.30 p.m. – the 12 noon time is just the check-in time, so the wait will be as long as first anticipated. I don’tmind about that; there will be plenty of activity, preparing me for the Great Event, and I’ve got a Kindle book on my phone to occupy me in quieter moments.
I was able to take the opportunity to apologise to her for the confusion over the exercise booklet – when the first lot of bumf came from the hospital after my phone appointment with her and there was no booklet enclosed, I had phoned the Breast Unit and left a message to that effect. The next day another pack of bumf arrived, and this time it was from the Breast Unit, and enclosed, as promised, was the exercise booklet! Yesterday I received a second one with a note from the Breast Unit apologising for the omission. It’s not always clear which department material is coming from. Anyway, I now have two booklets, so I’ve got one downstairs and one upstairs! I’ve been doing the exercises three times a day as the booklet suggests, in order to practise ahead of the time when I need to start doing them for real (the day after the operation). I told Kate I was doing this, and she thought it was a very good idea. The exercises are very gentle, and simple to do, and only take a few minutes. Easy to do for now, but they may be more of a struggle after the operation!
Today I have done the last of the laundry and finished the ironing, and sorted out the food for my hubby for tomorrow’s meals. I shall lay everything out in the morning before we set off. I have also got my bag half-packed and will be able to put the rest of the things in in the morning.
I have to get up very early in order to have breakfast at 6 a.m. I shall get dressed after that, into loose comfortable clothing, and finish packing up my bag, and getting the food finally sorted. There will be plenty of time because we are not setting off till 9 a.m.
One of the things they said in the information was that I was not to use any deodorant or talc or cream on the day of the operation. That’s fine, but they say to avoid it after the operation too – at least to keep it away from the wound. I did a bit of research online and found a UK-based breast cancer forum, and several of the ladies were saying the main problem is that most deodorants contain aluminium, which apparently can cause problems when you are having radiotherapy. They mentioned a very gentle roll-on that’s available from Tesco, guaranteed aluminium-free, so I bought some this week. It has a very pleasant light fragrance, and seems to work very well. The only draw-back with it is that it takes an age to dry – eventually I got my hair drier onto it!! The ladies on the forum all agreed that it was safe, and none of them was prepared to have BO for weeks, cancer or no cancer!!
The next entry into this diary will be after the event. I have no idea how I’m going to be feeling so it may be a few days before I write anything – we shall just have to see.
Friday 9th July 2021
I am writing this on Saturday 10th, the day after my operation.
All went well.
A very early start – I got up at 5.15 a.m. in order to have breakfast by 6 a.m. There was a bit of time after this to get ready, and then I suggested to my hubby that we left early so that we could drive round by the sea to enjoy the view and a bit of sea air. It was a beautiful day, and well worth it. Unfortunately on the way from there to the hospital, we got caught up in a very slow moving traffic jam caused by roadworks, and I got into Nuclear Medicine just a few minutes after 9.30, the time of my appointment. It didn’t seem to matter. I sat in the waiting room and read the sheet they gave me, which just contained the same information I had received before, about what they would be doing.
I went in and sat is an examination chair which they tipped back. I exposed the appropriate boob and they did the injection, just to one side of the nipple. This surprised me because I thought it would be nearer the underarm, but they said this was what they always did. They put a small dressing over the site, and I was good to go.
One of the staff present came with me up to Surgical Admissions, because I couldn’t carry my rucksack. She said if you ring for a porter, they either come straight away, or keep you waiting for an hour!
When I arrived, I asked them to phone the Breast Unit to inform them of the fact, so that Kate or one of her colleagues could come down with a selection of bras for me to try. I was then ushered into a dayroom and the waiting began. They couldn’t tell me at this stage what time my operation would be.
Two nurses (not Kate) came down from the Breast Unit with the bras. They gave me a white one which they said would be fine, but I really needed the next cup size up, which they didn’t have. They would send these to me, and I could pay for the three bras I am having when I have my follow-up appointment with the surgeon at the Breast Unit in two weeks’ time. The bras are much prettier than I expected! I thought they would be really clinical looking and boring, but they have lace on them. They are very high quality with a nice breathable lining. They come up nice and high at the sides and give very good support indeed.
During this period I also saw the anaesthetist for another pre-assessment; he went through my copious notes (they will soon need a forklift truck to carry these around!) and checked on my various medical conditions and how they affected me. He said that all was well and there should be no undue risk with the anaesthetic.
A bit later on Mr. Memon, the surgeon, saw me, and drew a cross on my boob where the lump was, and an arrow indicating which boob! If they didn’t do this, they might cut my leg off instead. We had a brief chat, during which he informed me that I was second on his afternoon list, which meant I wouldn’t be going to theatre until about 3.30 p.m. This was a bit disappointing, because I’d been led to believe I would be first, i.e. at 1 p.m. So then it was back to the waiting again. At this point I tried to phone my hubby to let him know what was going on. His mobile rang and rang, and then stopped – no opportunity to leave voicemail. I was a bit concerned. I tried several times with the same result. I also couldn’t get him on the landline.
There was another lady in the dayroom and I had a brief chat with her – she was having an operation on her toe.
At about lunch time one of the nursing staff came through and remarked that I was looking very tired. I told her I was beginning to flag, and she asked if I would like her to find a room with a couch in it so I could lie down. I was most grateful for this. The examination couch was rather hard, but they gave me some pillows and a blanket, and at least I could lie down; I managed to doze a bit but didn’t get right off to sleep. There were a couple of interruptions and the usual hospital background noise so it wasn’t that peaceful.
They then came in to measure me for the stockings and fit them, and take my blood pressure etc. I was then given a gown and told to undress, and put on my dressing gown and slippers. I put my clothes in the rucksack with my handbag which I put on the top for easy access afterwards – I put my glasses, phone and watch in there. The bag was put on my wheelchair and taken away to a locked room, to be brought down to Day Surgery Recovery afterwards. I got in one of their hospital wheelchairs and they wheeled me down to theatre.
As always, the staff in the anaesthetic room were bright and friendly and explained everything. I was helped onto the trolley which had a lovely warm blanket on it, and I was covered with something that looked like a transparent airbed – it was full of warm air and was delightful! I asked if I could take it home, but they said no… shame. They gave me a local anaesthetic injection into my hand (which hurt like crazy!!) so that the insertion of the cannula wouldn’t hurt. Go figure. Then they gave me a shot of antibiotics and an anti-emetic which they said might make my arm hurt, so they put a mask over my face and told me to breathe deeply – laughing gas! It didn’t make me laugh, though. Then the anaesthetic went in, and my last words were “God bless you all,” and then “Underneath are the everlasting arms” and I was gone.
When I woke up in Day Surgery Recovery, I wa aware of quite a bit of pain in the site where the lump had been removed, but nothing in the underarm area. They gave me some oramorph which took about 45 minutes to work. I gradually came to, and once I was fit enough, they offered me some food. I explained that I was vegan, and they brought me some delicious brown toast with vegan spread (something like Flora, I suppose) and an Alpro soya yoghurt with blueberries – absolutely delicious! By lunch time I had started to feel very hungry, but by this time it had passed off, but I was grateful for the snack.
I met up with the toe lady again – she was in a bed opposite to mine. She said her operation went very well too, and hobbled out on crutches.
After I had eaten I was allowed to get dressed. They helped me into the new bra before anything else. I have to wear these tight supporting bras for the next few weeks, night and day, to keep things from moving around too much so that the wounds heal more quickly. I feel very comfortable although it does feel slightly odd sleeping in a bra! I can take it off to wash, but over the weekend I must be careful not to get the dressings wet. After my phone appointment on Monday, as long as the wounds are not bleeding or showing any sign of infection, I can remove the dressings and be allowed to shower again.
I then tried to phone my hubby again several times, with the same result. I was beginning to get very concerned by this time. The nurses tried on their land line and got no response either. I don’t use my mobile phone that much, and the only numbers I have on there are my hubby’s, home, and a couple of friends. I phoned one of them and he offered to drive over and see what was going on, which would take about 45 mins from where he lived. About 10 minutes later, my hubby turned up in person!! I phoned our friend and told him to go home again! My hubby had decided to come over, not having heard anything (it was now 7.45 p.m.) and they told him at the front desk where to find me.
He got a new phone a week or two ago and he obviously hadn’t set it up properly! He has been receiving calls from other people, though, so we don’t really know what was going on. He said he’d tried to phone me, but he’d reinstalled all his contacts from a list he’d written out some time ago, and it had my old mobile number on it, so that obviously didn’t work. What a palava.
I was very happy to be home, and my hubby heated up my soup for me and I had a nice relatively light evening meal, with home-made bread and some fruit and yoghurt, and I took my paracetamol as instructed. We sat and watched TV for a while and then I said I was feeling very tired and went to bed. My hubby helped me a bit, and I was soon tucked up.
Because I normally don’t sleep that well, and always stay up well into the small hours, if I go to bed too early I tend to sleep even worse. I woke up several times during the night and just read for a while before dropping off again. I was very comfortable in bed.
Saturday 10th July 2021
This morning I feel tons better than I ever expected to feel! The operation sites are both tender to the touch but not constantly painful. I am being good about taking my pain relief regularly as instructed. I did the exercises when I got up, and they were no problem at all – there was only one where I felt some pulling under my arm.
When I got washed I noticed that there were some very curious marks on my arm on the operation side – as if strips of something had been applied to my skin. The skin in these areas was normal, but the areas in between were much more pink, as if I’d been sunburnt. This is not painful or itchy – it feels perfectly normal; it just looks really peculiar.
As I was finishing my ablutions, the Day Surgery Unit phoned to check on me and make sure I was all right, and I told them about this. They said to mention it at my telephone appointment with the Breast Unit on Monday. I said I’d taken some photos. They had no idea what might have caused this. I told them I was feeling much better than I expected, and she told me not to overdo things. She was pleased that the exercises were no problem, and was relieved that everything seemed to be fine. She said if I had any worries over the weekend I could phone the emergency doctor service (which I really don’t want to do – the last experience with that lot was a total disaster! I had a high temperature and was going down with sepsis as a result of a severe post-operative infection – I told the doctor I had had major surgery 2 weeks before, and he said I probably had flu!!!). I am sure all will be well, though.
My hubby helped me remove the support stockings so that I could wash them. I have to leave them off for an hour before putting on the second pair. He helped me with this too, because they are very tight, and involve a lot of bending over and pulling, which would be putting too much strain on me during these early days. Once on, they are very comfortable. In the past, I have always had white ones but the new ones are dark teal coloured. They said this new kind are better because they have the non-slip soles on them. They still have the round hole over the ball of your foot. This is so the nurses can stretch the foot of the stocking over your foot up to the ankle, to check for pressure sores on your heels, without having to remove the whole stocking. When you are wearing them, you are not aware of this hole, especially if you wear normal socks on top.
Monday 12th July 2021
At 9 o’clock this morning, Steph, one of the nurses from the Breast Unit phoned me for my pre-arranged telephone appointment, to see how I was getting on since the operation on Friday. I was happy to be able to report that all was well, and that I was feeling much better than I expected. She told me to be careful not to overdo things, and asked if I was doing my exercises. I said that I was, and that they were no problem at all. When she asked about my pain levels and whether I was taking my painkillers, I was able t report favourably about this as well. She was very pleased.
While we were on the phone, I took off the dressings and was able to describe to her what the wounds looked like. The steri-strips on the breast wound remained in place, and she told me not to pull those off; they would eventually fall off in the shower. If they were not off by the time of my follow-up appointment at the Breast Unit in a couple of weeks’ time, she said they would apply some spray to get them off as they shouldn’t be on for longer than a fortnight. I told her I had some adhesive remover spray in my stoma kit and could use that – she said not to do so just yet, but only just before the appointment if they hadn’t already come off on their own.
The wound under my arm looks worse – there’s quite a lot of bruising, and the scar is quite lumpy and snake-like. She said it would settle down in time. She was reassured that there was no sign of bleeding or infection. Both dressings were absolutely clean, apart from one tiny spot of blood on the underarm one.
We talked about bras. She asked if I was wearing the one they had given me day and night, and I said I was, and that it was very comfortable. She asked if Kate had come to see me in the Day Surgery Unit but I said that she had not; by the time I had come round it was about 5.45 and the Breast Unit would have been closed by then. She said she would check to see if they had any in stock that were one cup-size larger than the one they had given me, which is a bit small, and that she would ring us and then my husband could come and collect it.
Just as we were finishing lunch, Steph phoned again to say that they had one in stock. We decided that I might as well come in with my hubby, and she could check my measurements and let me have it then. It would also be a good opportunity for her to have a look at me.
We arrived at about 2.30 and I had to wait about 20 minutes to be seen. The nurse who saw me was Mary, who I had seen on the day when Mr. Memon first told me I had cancer. She took me into their bra fitting room which was lined with shelves full of the pretty boxes; there were also some very attractive fabric bags, which she said were for people to hide their drain bags in. I said they certainly knew how to look after us and give us things that didn’t look clinical, but were special. She agreed.
She fitted the new bra which is certainly OK, and she is ordering a third one for me. I told her how impressed I was with the quality of them, and how pretty they were with the lace trim. I said I’d noticed that the breathable linings had a slit at the side, presumably to insert a pad. She showed me one of these. She said it was a simple matter in this way to match both breasts if someone had had a significant amount removed.
Unfortunately I had not brought my bank card with me as I had not yet got around to restocking my handbag with its usual clobber – when I went into hospital I took the absolute minimum. She said they normally don’t release them without payment up front, but I explained that Kate had said I could settle up when I came in for my follow-up appointment, and she said that would be OK. I was impressed how inexpensive they were, given the quality, and also the beautiful packaging. She told me that they got these bras at cost price, which they were able to pass on to us; if you purchase them online they are twice the price! They are made in Canada, and specially designed for breast care. She told me that when she started working there three years ago, she ditched all her old regular bras and replaced them with these! I don’t blame her. First class quality in every way.
She was pleased with the state of my wounds. She said the underarm one was lumpy because of the glue Mr. Memon had used on it, and it would settle down. We also talked about the curious marks on my arms, and she said that they paint you with stuff to disinfect you – it is presumably coloured so that they can make sure they haven’t missed a bit! The marks of normal coloured skin were where the straps had been to secure my arm in place so that they could operate safely under my arm, and they had obviously painted the stuff on after the straps were in place. We noticed that the bra I had was a bit stained with pink from this. She said it would wash out, and that in a day or two my skin would be back to normal again. There is certainly no sign of irritation.
So I now have two of my three bras, one in a slightly smaller cup size. Both do fit fine, though, and I am happy to continue with them. Like Mary, I am not sure that I would ever want to go back to normal bras again after this!
Today another milestone was reached, with the removal of the dressings. Also, on the instructions of Mr. Memon, since the wounds have settled and there is no bleeding, today I have recommenced my rivaroxaban (anticoagulant medication). Everything is moving ahead according to schedle and I am making excellent progress.
Monday 19th July 2021
On 2nd July I received a letter from the hospital about my post-op follow-up appointmenton Thursday 22nd. The date was specified, but not the time, which they said would be confirmed later. Not having heard anything about this since, I thought I’d better phone up to find out what time we needed to attend, because my hubby had plans he needed to make.
They said that the MDT (multi-disciplinary team) meeting was due to take place on Wednesday 21st, after which they would be able to phone me to confirm whether or not this could be a telephone appointment – if not, the time was pencilled in for 12 noon. I know how things work now – they never give you bad news over the phone but always ask you to attend in person! From this, when they phone on Wednesday, whichever it is to be will indicate whether or not they found further cancer when my lump and lymph nodes were sent to the lab after the operation. I suppose it’s good that I’m getting the news a day earlier than expected! When they phone about they appointment, they will not, of course, be at liberty to give me any details and I know better than to make things difficult for them by putting them on a spot and asking them!
Today the top later of steri-strips on my breast wound were sufficiently loosened for me to be able to peel them off. The others were still pretty firmly adhered. They told me that they should not stay on longer than a fortnight and if they were still on for my appointment on Thursday (at the time of that conversation they were assuming I would be attending in person), they would apply some spray to remove them. I told them that I already had some adhesive removal spray as part of my stoma kit and could do it myself, but they told me at the time not to do it too soon.
Tuesday 20th July 2021
This morning I was able to remove the final steri-strips from my breast wound. It is good to see them go. The wound is looking fine – like the underarm one, it is rather bumpy and snake-like and there is quite a bit of swelling in the breast, but this is to be expected and will eventually go down. I can feel a hardness lower down the breast from the wound (where the lump was) and I assume this is just post-operative swelling as well. The bruising around both wounds has now virtually disappeared. Both are still tender to the touch but considerably less so as healing is progressing.
I have been taking photos of myself throughout – firstly, pre-op, because you could actually see the lump, and then subsequently. This is for my own interest, and it will be good to look back in the future when everything is fully healed, to see how far I have come, and how amazingly the body repairs itself with time.
Last night I thought I could feel a slight soft swelling under my arm which I thought might by fluid accumulating, but this morning it seems to be fine. It’s hard to know exactly what to expect but so far I haven’t had any major concerns and I am sure everything is progressing smoothly and according to plan.
When they phone me tomorrow, if they say I do not need to come in, I shall ask if I can settle up for my three bras that I have not yet paid for. I was due to do this on Thursday. I shall also ask if the third one has arrived yet, as it was on order, and if so, whether my hubby could pick it up. As before, we may both go in because it might be a good opportunity for one of the nurses to have a look at me to check that all is well, without having to have a formal appointment with the surgeon. We will know more tomorrow.
Only a couple of days more, having the wear the TEDs (support stockings) although I will have to continue to wear the bra at night for another month. On Friday it will be two weeks since my operation, and I shall be allowed to lift things again and gradually get my life back to normal!
Wednesday 21st July 2021
The Breast Unit phoned me as promised at lunch time, to inform me that I would be having a telephone appointment with Mr. Memon tomorrow at 9.45 a.m. This is a huge relief! Knowing the ways of the hospital, I knew that they would not be giving me bad news over the phone but always face-to-face; the fact that they are prepared to do the follow-up over the phone means that the results of my biopsy must be good.
Thursday 22nd July 2021
Telephone appointment with Mr. Memon, with Jane, one of the breast care nurses, in attendance.
He asked me how I was, and I was able to report that everything was fine, and I had no problems. The wounds were healing well and I had no swelling or pain, and the shoulder joint was fine too.
He confirmed to me that the lump was lobular cancer and he had removed it with a margin, along with one lymph node, and that no cancer had been found either in the margin or the lymph node. He said that the cancer was oestrogen receptor positive which would mean I would need oestrogen inhibiting therapy, confirming what I already knew, and that I would need radiotherapy.
The next step was my referral to an oncologist – at this stage he could not tell me who this would be, but that isn’t a problem. My appointment will be in 2-3 weeks’ time.
The oncologist has already requested a further test on the original biopsy, to decide whether or not I shall require chemotherapy. I was hoping that the good results after the operation would mean that I would definitely not require chemo, but unfortunately I still have to wait for an answer to that question. The result of this particular test takes about 2 weeks to come back, which will presumably be in time for my appointment with the oncologist. I am assuming this test will determine how aggressive the cancer was.
I will require a six-monthly infusion for bone health, because the oestrogen inhibitor puts one at risk of osteoporosis. I may also require some “tablet treatment” but he did not specify what this was. This is something I can discuss in detail with the oncologist.
After seeing the oncologist, I shall be referred back to Mr. Memon.
I shall require annual mammograms from now on.
I asked about removing the TEDs (support stockings) and he said I could leave them off for now. I said I assumed I had to wear the support bra at night for another four weeks, but he said that since everything had healed up well, I could leave this off at night, but to continue to wear it during the day. This is good news, because it is such hot weather at the moment and I don’t like wearing anything extra at night!
He said the breast nurse would follow up with this conversation after we’d finished. There was no phone call immediately afterwards.
I thanked Mr. Memon for all that he has done for me. I told him I knew that for him it was all in a day’s work, but it meant such a lot to me and I am very grateful.
So now we wait again for the next step – an appointment with the oncologist in 2-3 weeks’ time, and a decision on chemo.
Lunch time – the hospital phoned with my oncology appointment, which is on Wednesday 11th August at 10.30 a.m. The oncologist is Dr. Goodman – I have heard of him before because several of the people I met during my previous cancer journey were patients of his, and they spoke highly of him. I sall be in good hands.
Early p.m. – Jane, the breast nurse, phoned, and apologised for the delay in getting back to me after this morning. She asked if there was anything else I wanted to know, following this morning’s appiontment with Mr. Memon.
I asked what the “tablet” treatment was that he mentioned, and she said that was the hormone blocker.
She said she would get the bra lady to chase up my third bra for me and they would let me know when it’s in.
I asked whether I could now start wearing my hernia support pants again and she said as long as it didn’t involve too much strain, pulling them on and off. I said that I thought now the two weeks were up, I could start lifting again, but she said no – not for another four weeks. This is a bit of a nuisance as I really want to be getting back to normal again! She said there was still a risk of a seroma (fluid collection) if I strained myself, but she said everyone was different post-op and I needed to listen to my body – I should be able to tell if I was overdoing things. Still, four weeks isn’t so bad – after all, the first two weeks after the operation have passed in a flash!
I said thatI really, really did NOT want to have chemo if at all possible – I explained that I had had it before, and six years on, am still experiencing the effects, with peripheral neuropathy in my feet and to a lesser extent in my hands (reduced sensation in my fingertips) and also nerve damage to my bladder. She said how sorry she was to hear this. She said the test they were doing would indicate to them the level of risk of recurrence of the cancer, and this would determine whether or not chemo would be recommended. I explained that my hair was now down to my waist and I did not want to lose it! I added that I was trying, throughout this whole process, not to allow myself to get too far ahead of myself, but to take each step at a time, and not worry ahead about things that might not even happen. She said the oncologist would explain everything about the chemo and give the statistics about risks etc. so that I would be able to make an informed choice when the time came.
I thanked her and the whole team for all the help and support they had been giving me, and she said that I could phone up any time if I had any concerns or wanted to talk anything through. They are all incredibly supportive and encouraging.
Friday 23rd July 2021
Two letters from the hospital in the post today.
1. My appointment to see the oncologist on 11th August. They tell me I am to see Dr. Goodman. Also enclosed was a short questionnaire for me to complete, which seems a bit pointless because all it asks is information they already have on my notes.
2. Copy of the referral letter from Mr. Memon to Dr. Bukhari at the Oncology Department – so I’m not sure who I shall be seeing. Dr. Bukhari is the oncologist who was present at the MDT meeting on Wednesday 21st July and is presumably part of Dr. Goodman’s team.
My pathology
In the referral letter, Dr. Memon describes my condition as follows:
“…who recently had left wide local excision and sentinel node biopsy for grade 2 lobular carcinoma. She was also found to have pleomorphic LCIS. The tumour was found to be 32 mm. This seems to be clear from the radial margin but involving the anterior margin. As the resection was done right up to the skin there is no more breast to remove. We removed 1 sentinel node which did not show any metastatic disease.The tumour was ER positive Herceptin negative. NPI was 3.64.”
He also mentioned that at the MDT meeting, the oncologist had requested an oncotype test.
To decode this information:
Wide local excision – lumpectomy.
Grade 2 lobular carcinoma – the lobules are the milk-forming glands in the breast. Grade 2 – this is the moderate or intermediate grade. The cells are moderately differentiated, which means that they do not look like normal cells. In addition, they grow and divide faster than usual. He did not mention whether or not this was “invasive” – I was told after my initial biopsy that this was the case.
LCIS – lobular carcinoma in situ. This indicates abnormal cells that are confined to the lobule and have not spread outwards into the surrounding tissue. He mentioned that this was “also” – “in addition to” the grade 2 lobular carcinoma? – so I am a little confused by this. Pleomorphic – the cells do not look like the typical cells found in LCIS, which is apparently quite rare. This feature means that the cancer is more likely to grow faster and spread than if the cells have a more typical appearance. There is therefore a higher risk of invasive breast cancer, requiring to be more closely monitored and undergoing more frequent screening.
ER positive – oestrogen receptor positive, meaning that the tumour receptor status is that it attracts and feeds on oestrogen. This is why I will need hormone treatment which will either lower the amount of oestrogen in the body or block oestrogen from attaching to any breast cancer cells.
Herceptin negative – HER2, human epidermal growth factor receptor 2. These proteins are found on the surface of breast cells and are involved in normal cell growth but can become overexpressed, resulting in higher levels than normal. Too much HER2 protein can cause cancer to grow and spread more quickly. In my case, this result was negative.
I have also discovered that HER2-negative tumours between 2 and 5 cm in size (mine was 3.2 cm), hormone-positive, which haven’t spread to the lymph nodes or away from the breast, are classified as Stage 1B. At my original consultation at the Breast Unit, the nurse told me they didn’t normally consider staging, but I found it interesting.
NPI – Information from this site: “The Nottingham Prognostic Index (NPI) is an established prognostication tool in the management of breast cancers. Latest ten-year survival data have demonstrated an improved outlook for each NPI category and the latest UK five- and ten-year survival from BC has been reported to be 85% and 77%, respectively.” Mine, at 3.64, would be classified as moderate, statistically based on their cohort, with a cancer-specific five-year survival rate of 90%, and a ten-year survival rate of 78%. I can live with these odds! After all, one might get knocked down by a bus tomorrow.
Oncotype – Full details here. Basically it is a genomic test which analyses a sample of the tumour to find out how active certain genes are, that affect how the cancer behaves, including how likely it is to grow and spread. This test is combined with a weighing up of all the factors (type of tumour, stage, grade, size, whether or not hormone receptor positive, etc.) to determine the likelihood of the cancer recurring. It enables the oncologist to decide whether chemotherapy would be beneficial or not as a preventative measure. It is based on a scale of 1-100; a low score of 0-25 in people aged over 50 would indicate no benefit from chemotherapy, and a score of 26 and above in the same age group would probably benefit from chemotherapy. (Most people under the age of 50 are less likely to benefit.) The test is of most benefit for cancer like mine that has not spread to the lymph nodes under the arm, is oestrogen receptor positive, and is HER2 negative.
Diet
I found the following interesting information online, regarding diet and lobular breast cancer.
Foods that might reduce the risk of lobular breast cancer
There are no specific foods that have been found to be strongly associated with reduced risk of lobular breast cancer. However, studies have reported that women with high consumption of foods (but not supplements) containing beta-carotene or soluble fibre experience reduced risk of lobular breast cancer. In addition, cucurbitacin B, indole-3-carbinol (I3C), marine fatty acids (DHA and EPA), melatonin, pterostilbene, quercetin, and vitamin D all have been shown to have chemopreventive properties with respect to lobular breast cancer in cell or animal studies. Below are foods on our Recommended list that are also very good sources of at least one of these micronutrients (a selection from the list, which I regularly consume, omitting animal-based foods and other plant foods that I don’t eat):
Apples
Arugula (rocket)
Basil
Beans, dry
Blueberries & bilberries
Broccoli & broccoli sprouts
Brussels sprouts
Butternut squash
Cabbage
Carrots
Cherries
Cilantro (coriander)
Collard greens
Cucumbers
Grapes, red
Kale
Leeks
Lettuce, romaine
Onions, green (spring)
Parsley
Raspberries
Tomatoes
Walnuts
Watercress
Watermelon
Zucchini (courgette)
It is well known that taking micronutrients in supplement form is much less advantageous than consuming them as part of a plant-based diet; there is a subtle beneficial influence gained by the complex combination of micronutrients in the whole food. Some supplements may actually be hazardous and even put someone more, not less, at risk of developing cancer.
Vitamin D taken in supplement form is not known to cause any problems. My hubby and I have been taking this for some time now, after I discovered that most people in northern climes are deficient in Vitamin D, also known as the sunshine vitamin. It is important for a healthy immune system.
Alcohol is to be avoided as it increases the risk of lobular breast cancer. I rarely drink alcohol, if ever, these days.
I have been whole-food plant-based for about two years now. It is possible that my less-than-healthy diet prior to this may have been a contributory factor to my developing the disease, because it may take many years for a cancer to develop, and maybe it would have been more severe had I not transitioned to this healthy diet when I did. All I can do is to continue as I have been doing, and hope to reap the benefits long-term from now on.
On another page on the same website I found the following information:
Foods and spices that reduce the risk of ER+/PR+ breast cancer
The foods and spices listed below have been found to reduce the risk of ER+/PR+ breast cancer. It is important to obtain the component micronutrients by consuming food rather than supplements.
Apples
Arugula
Beans, dry
Bell peppers
Black pepper
Blackberries
Blueberries
Bok choy
Broccoli
Broccoli sprouts
Brussels sprouts
Butternut squash
Cabbage
Cantaloupe
Cauliflower
Celery
Cherries
Cucumbers
Flaxseed
Garlic, fresh
Ginger
Grapes, red or black
Green tea
Greens
Kale
Leeks
Lettuce, romaine
Mushrooms, especially white button & related
Olives
Onions, all types
Oregano
Parsley & cilantro (coriander)
Raspberries
Rice, brown, black, purple or wild
Seaweed
Strawberries
Thyme
Tomatoes
Turmeric
Walnuts
Watercress & garden cress
Watermelon
Zucchini (courgette)
Many of the foods in this list mirror those in the list above. Again, these are all foods that I consume on a more or less regular basis. I have omitted the animal-based foods and those plant-based foods which I do not consume regularly or at all.
Also on that page I found:
Foods to limit or avoid for ER+/PR+ breast cancer
The following foods or significant components have been linked specifically to increased risk of ER+/PR+ breast cancer or its recurrence (again, a selection from the list as I do not consume the other items):
Pumpkin seeds
Soybean paste
Sunflower seeds
This is rather a bore, because I regularly eat all of these! (I assume by “soybean paste” they mean okara.) I may have to think of omitting pumpkin seeds from my salads, and both kinds of seeds from my bread, which is a real shame because I adore the texture and nutty flavour. Perhaps if I reduced the quantity…
Sunday 25th July 2021
Positivity, worry and faith
Today a friend sent me a quote which she said she found helpful, and which also reminded her of my positivity.
If uncertainty is unacceptable to you, it turns into fear.
If it is perfectly acceptable, it turns into increased aliveness, alertness, and creativity.
(Eckhart Tolle)
I looked up Eckhart Tolle because I had not heard of him before. While from a Christian point of view, I would not accept much of what he says, and the fact that he has been recommended by Oprah Winfrey is certainly no recommendation to me, I do think this is a good quote and worth repeating.
For me, as a Christian, the antithesis of worry is FAITH. I say it again:
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus (Philippians 4:6-7).
People often remark on my positive attitude to life and are amazed by it. I do not find it particularly amazing in myself, nor do I think I am a particularly amazing person in any way, either. I just think that there’s a choice how you deal with things and that choice makes all the difference. Nothing is achieved by sitting in a corner weeping and feeling sorry for oneself and moaning; it is said that pity parties are usually only attended by one person (the host) because everyone else refuses their invitations! Nobody enjoys the company of someone who moans and complains all the time and feels sorry for him- or herself, do they. I think it is much better to accept what is happening, and to run with it and make the best of it, because at the end of the day you may not be able to do a lot to change it. Cultivating an attitude of gratitude is a huge antidote to worry and negativity as well – concentrating on the good things in life (there are always some, if you think about it, even if life seems pretty bloody at the time), and being grateful for these things and remembering to thank people for their kindness etc., really helps. Also it helps to direct one’s thoughts away from oneself and to think of others worse off than oneself; also to consider our nearest and dearest who are also suffering as a result of our circumstances. I want to behave in such a way as not to add to my hubby’s worries about me and to make his life easier, not more difficult, and not making a fuss is a step in the right direction. Focusing on little things that bring one joy is a huge boost – just taking the time to examine the beauty of a single flower; to smell the sweet scent of fresh air, to stroke the cat or enjoy a favourite piece of music – so much in this life to focus on and enjoy, which take one’s mind off one’s immediate trouble. Sometimes severe illness makes one appreciate the importance and loveliness of small things which in normal busy life pass beneath one’s notice.
Also, cultivate your sense of humour! There is always a funny side of things to be found if you train yourself to look for it. In my current situation, I call it my sense of tumour.
In this life, it is not the circumstances under which we find ourselves that is important; it is how we deal with these circumstances. I know that whatever happens to me, I am safe in God’s hands, in this life and in the next. Please do read my “New Life in Christ” page to see how you also can experience this peace and joy in your own life. When the storm is raging on the surface, whipping up the waves, the still waters run deep beneath, still and calm and peaceful, unaffected by the outward circumstances. God’s peace in your heart is the Rock, the foundation upon which all else is built.
Chemotherapy
Since yesterday I have been thinking a good deal about chemo. I have decided that unless my oncotype test score is inordinately high (unlikely, given that my cancer had not spread to surrounding tissue or into the lymphatic system), I am going to refuse chemo if it is suggested.
These are some of the facts I learned about chemo the first time around. These drugs are made up on an individual basis, tailor-made for each patient according to their oncologist’s prescription, and are so toxic that they have to be prepared in a separate department in the hospital’s pharmacy, away from everything else. On the treatment unit, the usual yellow sharps disposal bins ubiquitous throughout the rest of the hospital are replaced by special purple ones marked “Cytotoxic,” and are disposed of separately. The nurses on the treatment unit are specially trained in the handling and use of these drugs. I remember on one occasion when I was having my treatment, there was a leakage from another patient’s equipment and the substance dripped onto the floor. Immediately the machine emitted a warning beep and the nurses came to clear it up, donning masks and gloves, and warning everyone to keep still and at a safe distance until they had dealt with the problem and declared the area safe once more. I was made keenly aware at that moment that we were in a biohazard situation, and all the while this was going on, a similar substance was being pumped into my vein and coursing throughout my system.
These highly toxic drugs are a blunt instrument; a sledge hammer to crack a nut. While they may effectively destroy cancer cells, they also cause damage, often permanent, to healthy tissues. Six years on, I have been left with lasting peripheral neuropathy in my hands and feet. I have reduced sensitivity in my fingertips, and my feet are numb and so sensitive that I have to wear socks night and day, summer and winter, because I cannot bear the friction of the bedding against my feet at night, or the feeling of shoes directly against my skin. I have also been left with nerve damage to my bladder, causing retention and making it impossible for me to sense when it needs emptying until it is very full, resulting in mild incontinence. Last year I was given bladder management techniques by the physiotherapist to help me manage this problem, and these have been largely successful.
While I was having my chemo, which was in three-weekly cycles over a period of six months, I felt extremely ill and suffered some very unpleasant effects, and this was cumulative over the length of my treatment. I have never felt more ill in my life, apart, perhaps, from when I was suffering from sepsis as a result of a severe post-operative infection in 2018 but that was different. In that case, I was feverish, freezing cold, completely off my food and feeling mentally out of it – symptoms I could describe, but with the chemo, apart from the effects such as extreme peripheral neuropathy, incapacitating fatigue, altered taste, acute painful sensations when beginning to eat etc., the general malaise was not something one could describe specifically. My whole system just felt completely devastated.
It is not known whether there were any cancer cells remaining in my body after my initial surgery; my surgeon informed me that in all likelihood the operation had been curative, but the chemo was a “belt and braces” adjunct just to make sure. A lot of chemo is “adjuvant” in this way, and one does wonder how much of it is strictly necessary; the oncotype test does give a statistical analysis of possible risk of recurrence and therefore aids the recommendation for or against adjuvant chemotherapy but nothing is 100 percent certain.
Given my NPI (Nottingham Prognostic Index) score (see Friday’s diary entry), my survival rate 5 years on is likely to be 90 percent, and 10 years on, 78%, by which time I shall be 78 years of age, and I think those odds are good enough to run with, without accepting the chemo.
Obviously whether or not an individual accepts or refuses chemo is a personal choice, and I am certainly not saying to people that they should never accept it. I am just saying that one really needs to weigh up the risks and benefits and go beyond what the doctors say, and look at other people’s personal experience of it, what is actually in these drugs and what they do to your body, before coming to a final decision. They cannot force you to have chemo; ultimately it is your choice, but this must be an informed choice, after you have examined all the facts at your disposal.
For me, personally, it is not an experience I am keen to repeat.
