I had a routine mammogram 2.5 weeks ago where a lump was found. Since this, I have been diagnosed with grade 3 breast cancer (the fastest growing breast cancer). I‘m waiting to hear when I will be going in for surgery to have the mass removed. I’m sharing my journey with you for a couple of reasons: As a coping mechanism (put my thoughts down, get my head around it all) and to share my experience in the hope it may just help someone else going through breast cancer.
***WARNING*** This blog is a live journey blog, I will be updating and adding information as & when it happens. This means you will read how I’m feeling at that moment, the treatments I am having and even a few swear words. No offence is meant but if you are easily offended, this may not be something you wish to continue reading. If you do wish to keep up-to-date, then you may want to bookmark this page.
I went for a mammogram on 25th August 2021 at Teddington Hospital. I didn’t think too much of it, had plenty before, nothing really to it. The lady who performed my mammogram (mammographer) thought at first I may not be able to have my mammogram as I am a full-time wheelchair user and unable to stand and she has had cases before where it can not be performed. I assured her all would be fine as I have had them done before from my wheelchair, the fact my armrest can be removed and I am quite mobile/manoeuvrable. She seemed pleasantly surprised at how easy it was to do.
The following week, I received a letter informing me a mass had been found and I would need to have this investigated further in the form of some scans. This included an appointment for the breast clinic at St. Georges Hospital on Monday 6th of September 2021. At this point, I wasn’t overly concerned as I had had lumps found before and even a biopsy of one of them. All thankfully turned out to be just fatty lumps.
My Scans & Biopsy
I met with a wonderfully warm team at the St. Georges breast clinic. I had another more in-depth mammogram (3D I think) and an ultra-sound scan on both breasts. After the scans, it was decided a biopsy would be needed of my right breast where the mass had formed.
For my ultrasound scans, I hopped onto the hospital bed, lay on my left side (as it is my right breast the lump was found) and some lovely cold jellified liquid was spread onto my breast and a handheld device then moved across my breast so the consultant could see what was happening on the monitor in front of her. https://www.cancerresearchuk.org/about-cancer/breast-cancer/getting-diagnosed/tests-diagnose/breast-ultrasound
After I had my scans. I stayed on the bed so the Dr could perform the biopsy. The nurse that was with me chatted the whole time keeping me occupied. The Dr/consultant took a needle biopsy of the mass so it could be tested to check for cancer cells. You are numbed first and I didn’t feel a thing. https://www.cancerresearchuk.org/about-cancer/breast-cancer/getting-diagnosed/tests-diagnose/needle-biopsy
After all the procedures had been done, we sat with the consultant who said she was concerned with what she could see so far but obviously until the results come back nothing could be confirmed. The biopsy results would be in the following week. I explained we were away visiting family the following week so it was agreed we would have an appointment for the Monday after we returned.
We were offered a cup of tea and left alone for a few moments (to allow us to gather our thoughts). I’m not ashamed to say both my husband and I had a little cry.
My Biopsy Results
We arrived back at st. George’s Hospital feeling quite positive as we had resigned ourselves to the fact it was going to be cancer. If it was cancer, we knew it could be dealt with as it is caught early, small and contained and thankfully (so far) none in my lymph nodes.
We were greeted again by the same wonderful breast cancer nurse who took us to a room to meet with a different consultant. (My IBS was at an all-time high, I felt hot and sweaty, a little shaky karma and very light-headed). I knew I was going to not be able to take all the information in today. Thankfully my husband was with me.
The consultant indeed confirmed it….I had breast cancer. I was told it was grade 3. As much as I was prepared for the news, it still came as a shock, especially the fact it was grade 3.
A lot of people get grades and stages of cancer mixed up. I was told:
Breast cancers are given a grade according to:
- How different the cancer cells are to normal breast cells
- How quickly they are growing
The grade of a cancer is different to the cancer stage.
Cancer’s grade is determined when a doctor (pathologist) looks at the cancer cells under a microscope, using tissue from a biopsy or after breast cancer surgery.
Source: Breast Cancer Now Org: https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/cancer-grade
The stage of a cancer describes the size of the cancer and how far it has spread.
Your breast cancer may be described as stage 1, stage 2, stage 3 or stage 4.
An early form of breast cancer called DCIS is sometimes referred to as stage 0 breast cancer.
The stage takes into account:
- The size of the cancer
- Whether the lymph nodes are affected
- If the cancer has spread to other parts of the body
The stage of your cancer may not be fully known until after you have had surgery.
Source: Breast Cancer Now Org: https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/cancer-grade
He went on to tell me that my type of cancer is the most common of breast cancer which he said was obviously a good thing. They explained it should be easy to treat as the mass is small and contained. It was confirmed that no cancer could be seen in my lymph nodes but I will have a few removed during surgery to be examined under a microscope to make sure.
My type of cancer is oestrogen fed, meaning my oestrogen must be lowered once the mass/lump has been removed as a preventative measure to make sure all precautions are taken to prevent cancer from returning. I was told to expect an appointment within 2 weeks to see a surgeon at my local hospital (Wet Mid).
The following day (Tuesday), I received a telephone call from West Mid hospital offering me an appointment for the following day. I was extremely surprised to receive an appointment so quickly, in reality, I had expected to receive one the following week. of course, I accepted the appointment and was happy that things seemed to be moving along very quickly. The downside of this though is that you don’t get much time to take everything in and digest what information you have already received.
I arrived at West Mid feeling extremely anxious and was also worried my IBS would kick off and cause me to keep rushing to the toilet. My appointment was at 10 a.m. and we got seen at approximately 11 a.m. This did not help my anxiety!
My first impression of the Dr. I saw, put aside the fact she explained everything to me that had already been explained to me twice. (I understand that has to happen). It was the fact that she seemed to dither about my disability. The fact I could not raise my arm above chest level.
(When you have to have radiotherapy on your breast you have to keep your arm above your head to allow the x-ray machine access). Of course, this makes total sense but due to my disability, I’m unable to do this. Surely, I’m not the first person needing radiotherapy who can not elevate their arm by themselves, am I?
Every effort was made to alleviate the doctor’s concerns. I explained that we would find a solution one way or another. But again she seemed to just dilly-dally and be unsure of how to proceed. This made me feel even more anxious. What if it’s decided I can’t have this treatment because of the fact I can’t raise my arm above my head by myself? Any alternatives? If there are, the doctor didn’t say.
St George’s Hospital came across very confident, positive, knowledgeable. This made me feel extremely at ease about everything I was going through and going to go through. My first experience of West Mid Hospital actually made me feel the opposite. I came away feeling more anxious that certain treatments may not go ahead. I’m unsure how my treatment will now proceed. Something St. Georges seemed quite confident about. I don’t know if I wish to continue being treated by West Mid. I have had one or two bad experiences there.
What made matters worse was the fact the doctor turned around and told me they were not even expecting me? How on earth did that happen? It’s now been left that I am to expect a phone call next Tuesday. I assume this is to give me another appointment to see the doctor/surgeon again. The Dr. explained they have their “meetings” on a Tuesday to discuss cases!
Those that don’t know, I had a heart attack 5 years ago next month. (A blog I have been trying to write for the past 2 years but for whatever reason, I keep procrastinating over it). The doctor is naturally concerned that my heart is looked after throughout my treatments especially if I need to have chemotherapy as this weakens the heart muscles.
I’m awaiting an appointment to have an ECG test and more scans on my breasts. I’m hoping the phone call I hope to receive on Tuesday will let me know more about this.
In all fairness, I have a lot going on with my body right now. This includes IBS, anxiety, heart failure and cancer! So I am extremely worried about how all of this will affect my different ailments. This has not yet been discussed in full with me so I have no real knowledge at present of what any of this will do to me!
My anxiety causes my IBS to flare up. This then makes me need to keep going to the toilet, which is not ideal as hospital appointment times are just not geared for people with these types of issues.
When I’m in an appointment feeling extremely hot, shaky, dizzy and needing to rush to the toilet, there is no way I can dedicate myself to asking questions or finding out how treatments will affect me etc etc. I have no idea right now how to deal with this.
Only time will tell how things will pan out. I will add more once I have spoken with the hospital on Tuesday.
Tuesday 14-9-21 – I received an email last night with an online appointment. This appointment is for an echocardiogram today. The Dr’s need to know if my heart is strong enough for surgery and any treatment needed afterwards. Fingers crossed it all goes well. My stomach’s churning already. I really do hope my IBS stays away. It’s not like I can leave mid scan to rush to the toilet.
OMG, OMG, OMG. I have just received a phone call letting me know I’m booked in for surgery on 23rd Sept 21. That’s next week! Yes, I know things need to move swiftly and I am glad of that. But I feel I haven’t had time to breathe, let alone take all the information in.
I am so damn confused right now. I’m booked in to have an echocardiogram today, this is to check my heart is strong enough for surgery yet here I am already booked in for surgery? I have no idea how long it will take for results to come back from the echocardiogram and what if it’s not good news?
Will my surgery be cancelled? Are there things they can do to help me through surgery? I’m sure I’m not the first person to have surgery with a heart condition. Am I warranted in my concerns?
I have so many questions and so far I’ve had no second appointment as promised to see the doctor again to be able to ask these questions. No chance of my IBS staying away now!!
Tuesday 14/9/21 – My Mistake
Can you believe it! I only miss-read the bloody letter, I can’t believe I was so stupid to read the letter incorrectly, my echocardiogram was for next month? This was only found out when I arrived at the hospital and tried to check-in at reception. Thankfully long story short, I explained my echo was needed “before” my operation which is booked for next week, the receptionist said she would speak with cardiology to see what was happening. I was told my Echo would be done today. Phew, what a relief!
It turned out to be a happy accident and a bit of a haphazard day, I ended up going from one department to another, to another. In a nutshell, they done my echocardiogram but also wanted to go ahead with a contrast scan. This meant injecting some dye into my heart. Guess what? Because I didn’t want to set off my IBS, I didn’t drink very much before arriving at the hospital. Therefore this meant my veins were very deep and hiding!
No Veins Today
A doctor came to canulate me (put a thin tube into my vein). She struggled to find a vein but then believed she had cannulated me. When they started to inject me with saline fluid, the pain was terrible. I claimed the canular was not in my vein but the Dr. claimed adamantly that it was. They continued to then inject the dye….I told them to stop as the pain was getting much worse.
(Now I would never tell a doctor or nurse how to do their job but I have had over 30 operations. This means I’ve had enough injections to know if my vein has been missed or not). When they finally stopped injecting me. I sat up and seen my arm was very swollen because the liquid had not gone into my vein but had settled under my skin, I had no choice but to say, “I told you it wasn’t in my vein”! The Dr. left the room rather disgusted (probably with me lol).
It was agreed that the echocardiogram team would speak with a cardiologist to find out if what scans they had taken already that day of my heart were enough. If not, this would mean they would have to try again to find a vein to be able to inject the dye.
As I was in the Echo room having my veins prodded, pricked and stabbed. I had a phone call regarding an appointment to see another surgeon. My husband answered the phone (obviously) and explained that I was actually at the hospital at that moment. The lady explained she would get me in to see the surgeon after my echocardiogram. This would prevent me from having to come back again to the hospital.
I was delighted and relieved that everything seem to be happening on the same day. No need to keep coming back. When I was in with the surgeon, he asked me what I knew already about my condition. everything I told him he agreed was pretty much up to speed.
He was a little concerned regarding the date I had been given for my surgery. There was some confusion as to whether or not this appointment was for my pre-op. I explained I was told over the phone it was for my surgery and that I must arrive at 7:30 am.
He believed this was not enough time to allow for the other appointments I needed to have before surgery. Which included my pre-op, risk assessment and Covid test. The risk assessment appointment would be with an anaesthetist. This is to assess what medication etc I can be given and how best to put me to sleep. He believed the 29th of September would be more of a realistic date.
The surgeon had a look at my previous ultrasound scans of my breast and said I didn’t need any more. This was a relief as I now wouldn’t have to get on/off another hospital bed.
While waiting to see the surgeon, I was told it had been decided the imaging department would have a go at finding a vein. They would use ultrasound to help find a vein. I, therefore, had to drink plenty of water to hydrate myself in the hope this would open up my veins. (Oh boy, here we go again!).
At long last, a vein had been found and I had been successfully cannulated! We made our way back to cardiology to have another go at injecting my heart with dye. I have no idea as to what happened but the tube had somehow come out of my vein, so once again while injecting me with dye and saline fluid it was extremely painful as it was not going into my vein.
Giving up now seemed the only option, much to the relief of my arms. They are in a lot of pain and now expecting some lovely bruises. It has been left that if more scans are needed they will get in touch with me.
I am now waiting for my risk assessment and pre-op appointment to come through. I have a telephone appointment on Thursday, maybe I will know more then.
I received an email appointment for my surgery. It has been put back to the 6th October 2021. Fingers crossed this doesn’t end up being changed again.
Thursday 16/9/21 – 1st Of My Pre-op Assessments
Today is the day of my telephone pre-op assessment. It went ok except for the fact I am a full-time wheelchair user has never been noted on my files, as the nurse asked me, “if you stand, walk or climb stairs do you get out of breath”? I feel the fact I am a full-time wheelchair user who is unable to stand or walk, is rather important information that should be noted down on my records.
Friday 17/9/21 – Implant Removal
Yet again another appointment. This time it’s to have my contraceptive implant removed. The surgeon explained I must have it removed as this releases oestrogen into my system, which obviously is not a good thing as my type of cancer is oestrogen positive.
My GP seemed a little confused as she said my implant doesn’t release oestrogen but only progesterone. All the same, it is being removed. I have to say, previous concerns about the implant being slightly buried, was wonderfully alleviated when my GP managed to remove the implant seemingly within moments. (I wouldn’t have anyone else insert/remove my implant, she is the best).
Saturday 18/9/21 – 2nd Of My Pre-op Assessments
Today I had to be at the hospital at 9:15 a.m.. (no rest for the wicked). Unfortunately, I was not forewarned that I would be having a blood test. Therefore my usual routine of not eating or drinking before an appointment ruined all chances of blood been taken from any one of my veins! Something I am extremely pissed off about.
I did say to the nurse that it would be helpful if a note was included to inform patients if a blood test is required, so we may hydrate ourselves. I mean, it’s not like I haven’t been pricked, prodded, bruised enough that I have to go through another failed attempt to take blood! My arms still hurt from the Echocardiogram attempts.
I am due to have my bloods done next Tuesday at my GP, so the pre-op guys may look to use those results……Here’s hoping!
I am both physically and mentally exhausted right now!! Things move so quickly, you don’t really get time I’m to digest all the information that’s been given to you and believe me it is a hell of a lot of information you have to digest! You’re given booklets, leaflets, letters to read through all about your breast cancer, day of surgery, appointments that have been made for you, the list just goes on. Don’t get me wrong, things have to move quickly considering the nature of my illness but boy does it drain you!
One word of advice and I’m sure most of you will have already thought about this. If you are going through something of a similar nature or any serious illness, don’t make any serious, life-changing decisions. No matter how well you think you are coping, it is not the time to be making any kind of major decisions!
I was enjoying a week off from having appointments, being bombarded with information, and even thinking! Then this happens…
I received a phone call from my Dr’s. My bloods had come back. I’m bloody Anemic!! I thought this was a simple mistake as all my life I’ve been accused of being anemic as I keep telling Dr’s no, I’m bloody well naturally pale looking. On a good day, I look like Dracula’s wife!!
Iron deficiency anaemia is caused by lack of iron, often because of blood loss or pregnancy. It’s treated with iron tablets prescribed by a GP and by eating iron-rich foods.Source: NHS.co.uk
Now I have to go to my GP’s, get examined and because I mentioned my IBS has been playing up, she wants me to go for further tests. You know where this is going, don’t you! Nothing like having more crap dumped on your plate when you’re not enjoying the food already!
My GP noticed I was due a smear test, so suggested why not have that at the same time. Oh of course! I already feel like a rubber mannequin that’s been pushed around every hospital department/doctor. Needle after needle pricked in my arms. Poked and prodded from student doctors to surgeons…… Yeah, why the hell not!
(Today is Thursday as I’m typing this), on Sunday when I got the phone call, I was on my own. I felt extremely low. I cried. Felt like there was no light at the end of the tunnel. Thankfully when I awoke the following day I felt much more positive, no idea as to why but I did and I was thankful. I can’t stress enough how having a positive mind is most certainly the number one factor in getting through this.
So my appointment at the Dr’s is over (thankfully). My stomach was examined and I had a rectal examination. She hasn’t said whether she’s found anything to worry about so I take that as a good point. My smear on the other hand wasn’t as pain-free as I had hoped. I know they’re not the most comfortable thing to have done at the best of times but this was somewhat more painful than normal! (Dear men, to those of you who think you are the stronger sex…..Bollock’s!). The worst part?? I’ve got a whole lot more to endure!!!
My surgery is 5 days away!! I’ve another pre-op appointment tomorrow, (hoping this is finally my risk assessment with my anaesthetist). Then on Monday, I have my Covid test and then I must self isolate. I’ve been doing this already (the last thing I want is a bloody cold).
This is so hard for me to share due to the emotions I am going through right now. I have spent the last two days, crying, feeling sick, terrified and in a state of shock & confusion. It’s the weekend, so my daughter is not at college so I’m trying to be brave around her. When I’m on my own or with my husband, I just can’t help but break down into tears.
I had my anaesthetist appointment two days ago (Friday, today is Sunday) and I am still crying. The news was not good, and I have to say it has terrified me! My heart failure has deteriorated to the point that general anaesthetic is going to be extremely risky. One of the risks involved (worst case scenario), I have a heart attack on the table and I don’t come back from it. Not something I ever thought he would come out with.
My appointment consisted of the anaesthetist asking me a question then typing my answer, asking a question typing my answer. This went on for approximately an hour and a half with bits of info given to me along the way. After typing up all my answers, he said he would need to talk to some colleagues regarding my general anaesthetic.
He came back and told me they had discussed my situation and concluded that the anaesthetic would be extremely risky but went on to say how advanced medicine has become and that they are prepared for most eventualities they may come across. If it was his sister in my place, he said he would tell her to go ahead with the surgery.
He explained how I would have to have lines put into my arteries and my neck, for any drugs that may have to be administered while I’m under. It was in this part of the conversation that he told me that whoever he had spoken to wanted him to convey to me all the risks involved and the main one being, as he put it “death on the table”! Not the best way he could have told me.
I was told that they would be expecting some issues during surgery. Due to my heart being in the condition it is in, they expect things like arrhythmia where my heart will beat out of proper sequence for a better phrase. I can’t really remember much else that he explained because at this point I was rather numb!
I do, however, remember thinking what about local anaesthetic? would this not be less strain on my heart compared to general anaesthesia? Trouble is, I was so numb and in tears, at this point, nothing came out of my mouth!
It was around this part of the appointment I felt the anaesthetist wanted to finish up the appointment. Lo and behold before I knew it, he had stood up and walked towards the door. I assumed the appointment was over? There were no “any final questions”? Sorry, it’s such bad news, thank you for coming etc. It was stand up and open the office door.
Now I’m sat in tears trying to digest all this information and he really is practically ushering me out the door! I felt I wasn’t given an opportunity to compose myself before leaving, so I ended up wheeling down the corridor where other patients were sat, with tears still streaming down my face!
My anaesthetist was factual, to the point and willing to answer questions I had. I do, however, feel my anaesthetist was too factual and too much to the point. Very clinical. I feel he could have been warmer/sensitive about the whole conversation.
You’re sat here asking question after question, typing down answers. Then, at the end of it all, you turn around to the patient who’s gotta have the surgery, that if they have a general anaesthetic they may not survive the operation but if it was their sister, they would tell her to go through with it! You really did warrant some empathy here!
As someone who has had their fair share of operations (over 30 in total), I think I’m quite knowledgeable on the difference a good bedside manner has on patient well being. You could be a world-renowned surgeon in your field but if your bedside manner is crap, it’s not going down well with the patient! My Anaesthetists bedside banner wasn’t crap but it certainly could do with some improvement!
A patient’s state of mind when facing surgery is half the battle. Last week, after speaking with my cancer nurse and my surgeon I was feeling very positive about everything. This was partly because of how I was given information/procedures etc. It was a case of ok, I’ve got to have this surgery, then radiotherapy and if cancer’s not spread to my lymph nodes, that should be the end of my treatment!
My State Of Mind
Unfortunately, leaving my anaesthetist appointment I was not so positive! Yes, this had a lot to do with the type of information I was given but in all fairness, I’m a strong believer in “it’s not what you say but how you say it”! If you’re giving bad news to a patient, then you need to be more considerate and not over clinical! If he had shown a little more empathy I may not have come away feeling the way I did!
So, how did/do I feel? I’ve just been told my heart failure’s deteriorated, to the point it now looks like I’m going to need an ICD fitted (type of pacemaker) and that means there is a real possibility I may die on the table. Then 5 mins later I’m literally being ushered out the door as the tears are still rolling down my face?? Angry, that’s how I initially felt.
Then it all kicks in! I might die? Next Wednesday might be my last day on this earth! What about my family? How do I tell my parents who’s already lot one child? I won’t get to see my first grandchild grow up! Then it changes to..I must write a list of all the things hubby needs to keep on top of, after all, he won’t know what to do.
The thoughts are endless of what you think you need to put in place. You’re in a mad instant panic! What do you do for the best, you just don’t know! I have done nothing but worry, cry, feel sick and try to make sense of all of this. My IBS has now started playing up. This means I’m now worried about how I’m going to cope on the morning of my surgery!
After getting home from my appointment, I received a call from my surgeon. He was phoning to inform me that they (whoever “they” are) had discussed my case again and have now decided to put local anaesthetic on the table (pardon the pun). He went on to say that we would talk more in-depth about it on the morning of my surgery.
So, without sounding melodramatic, I have to make what could be a potentially life-threatening decision on the morning of my surgery! ARE YOU FOR REAL???? Of course, there is no possibility I’m going to be anxious, nervous or not in my right frame of mind AM I!!!!! I’m going to be COMPLETELY CAPABLE of making that sort of decision!
Yes, I’m aware that they don’t want to delay my surgery for obvious reasons but come on, really? You expect a patient who was told just a few days beforehand that:
- They could die on the table
- Their heart has deteriorated so much it looks like they’re gonna need a ICD/pacemaker
- To be in a good state of mind to make that kind of decision!
Ok, let me explain. My heart is not functioning/pumping as it should be. A general anaesthetic will put extra strain on my heart which will make my heart work harder. If my heart is overworked too much, it could just pack up. Hence the risk of a heart attack during surgery!
I may have this wrong but I believe heart failure patients undergo a stress test of the heart before surgery. Being a full-time wheelchair user, they are not able to perform one on my heart, therefore, not giving them the information they need regarding how much stress my heart can actually handle.
Stress On My Heart
General anaesthetic, I’ll be Intravenously wired up prepared for any kind of medication that’s needed to be administered during surgery. I’ll have lines put into the arteries in my arm and neck. As mentioned before (I think) they are expecting issues. My heart will do weird things like beat out of rhythm and such, which I’ve been assured they’re prepared for. It’s the heart attack bit that worries all involved.
Local anaesthetic, I’m assuming not much stress will be put on my heart. The surgeon, when on the phone, explained I would obviously be completely numb in the area they were operating on and I would be sedated.
Call me silly/childish/drama queen I don’t care. I have real concerns about how many lines they’ve got to put in before I’m sedated. My veins are complete ******** to try and find. It’s very painful for me when my veins are not playing nice! As you’re only allowed small sips of water leading up to surgery, I can’t drink enough water to stay hydrated for my veins!
I understand dye has got to be injected into my breast and lymph nodes so they know which lymph nodes to remove to have tested. I believe this happens a few hours before surgery.
All these things are adding to my anxiety which I can’t help but feel is not going to be good for my heart on the day. I just wish they could do all this after I’ve been sedated!
I’ve cried my way through this section, (re-living the appointment). I’m so scared of what may happen. Has the cancer spread? If so, I’ll have to go through all of this a 2nd time to have my lymph nodes completely removed and that is if only my lymph nodes are affected!
Covid Test – 4/10/21
Once again, I was at the hospital today, this time for a covid swab test. A couple of days ago, my breasts nurse phoned asking if I wouldn’t mind popping down to see her after my swab test so she could go into more detail about the day of my surgery.
At this meeting, she asked me how I was doing, this time I was honest. I explained how I had pretty much cried the whole weekend and do how I was up one minute & down the next. she asked me why I’ve been feeling this way and I explained about the anaesthetist appointment and how I came away feeling very scared!
Whether it had been planned already, I’m unsure but she got my surgeon to come in and speak with me. This was probably the best move so far. He explained things in so much detail that it has alleviated a hell of a lot of my worries and fears.
It turns out my heart hasn’t deteriorated to the degree suggested previously. (It was knackered from the start)! My surgeon explained it to me like this; imagine the heart is filled with a cup of blood, under normal circumstances, a person’s heart will always contract and disperse a minimum of 50% of that blood around the body. In my case, my heart is only dispersing 20% of that cup of blood. This is why general anaesthetic is not the best option for me!
Looking Like A Local Anaesthetic
My discussion with my surgeon involved a proposed plan for Wednesday, it goes something like this: I will arrive at the hospital at 7:30 in the morning, I’m going to have more scans to check my lump and lymph nodes. (I’ve been told to expect this to be a long day. They’ve scheduled my surgery for the afternoon).
If the scans show my nodes look in any way abnormal, while in the theatre they will take a biopsy. At present they’re aiming to just remove the lump due to how much local anaesthetic they can give me. For those unaware, the amount of local anaesthetic is governed by a person’s weight.
That is why they feel they would not be able to remove any lymph nodes at the same time. In light of this, if my nodes do come back looking abnormal, I was told my radiotherapy treatment can be altered so it will blast the area to include under my arm where my nodes are.
I think now that I can envision the day in my head. This has alleviated a lot of my fears. My surgeon whose name I completely forget every time I’m told it has what I can only describe as a calm air of confidence. You are immediately put at ease when he starts speaking to you. Believe it or not, he has a sense of humour as well. Something that can be a rarity in surgeons. (In y experience anyway). He has assured me that if I have any questions, concerns etc he is more than happy to speak with me. Whether that is me going into the clinic or over the telephone.
I am just very relieved to be in a better, more positive frame of mind for Wednesday!!
I’ve been trying for a couple of weeks to confirm if my husband (who is my full-time carer) is able to be with me when I am admitted for surgery. I’m not obviously expecting him to actually come down to theatre with me (even though that would be amazing) but as I now have to have scans etc on the morning of my surgery, I do physically need his help. The lady I spoke with yesterday when having my Covid test, seemed quite adamant that he wouldn’t be allowed to stay with me. She explained she has contacted someone else to find out and once they have replied, she will get back to me.
Obviously, this got me a little panicked, especially as today (Tuesday) I haven’t heard anything back from her. So I turned to #disabilitytwiiter and for their advice. I was told a call to PALS may do the trick. So I phoned PALS and thankfully they have come back saying all is well he can be with me but will have to have a Covid test on arrival, fair enough! I am so relieved! (Are things finally looking up?). I really do hope so!
Ok, my surgery is tomorrow, got plenty to sort out today (I was advised to take an overnight bag) so I have no idea as to when I will physically be able to update you all on my progress. (I might get hubby to let you all know how it went until I’m fit enough). Would be great if you could keep something crossed for me.
Post Op – 2 Days After My Operation
IT’S OVER! I’m glad to say everything went better than I ever could have anticipated! My lump has been removed, it seems my lymph nodes are clear. I will have this confirmed in my follow-up appointment in two weeks time (so fingers crossed). Not sure you all want me to go into much detail about the surgery itself but let me just say, having it under local anaesthetic was a lot easier than I envisioned it to be.
My surgeon prepared me for what was expected to be a long day. In reality, it went a lot quicker. Went down for my scans at approximately 11 a.m. In surgery an hour later, back on the ward at 2:30 p.m. Told I could go home and approximately 4:30 pm. Can’t ask for better than that, can you?
My team of surgeons, anaesthetists, nurses and everyone else that has been involved in my operation & care to date, I cannot commend them highly enough, they have been amazing! Having the wonderful team that I did have and still have, throughout my treatment, in my opinion, has made all the difference!
Once on the day ward, there was an issue with the hospital bed. It was too high for me to be able to transfer onto it and this was already at its lowest point. Another bed had to be found, this one was an electric bed. The problem? it was just as high as the previous bed but the bottom half of the bed tilted downwards which did actually enable me to transfer. I was not the only one who had this issue either! We were told later, a hoist was available? Little too late now!
The hospital let me go home the same day, the best part of local 🙂 Surprisingly, I’m not in much pain. The hospital sent me home with painkillers but thankfully I’ve only needed paracetamol. The hardest part I would have to say is sleeping. I sleep on my right side and obviously as this was the side that was operated on, I’m unable to do this right now. No matter which way I lay, I get a little sleep here and a little sleep there.
I am now just resting up and taking one day at a time. Please, if you are going through this yourself or similar and have any questions, just drop me a line and I will help where I can.
I’m a couple of days home now and have to say I’ve not been in that much pain. I’m taking paracetamol three times a day to keep what little pain I do have at bay. Sleeping is difficult as I mentioned previously but other than that, I’m doing great. A little tip for you:
Post-operative bras – I wasn’t given any information as to should I wear one, any particular kind, or where I can find one if I did need one. I have to say though, I would most definitely recommend wearing a post-op/supportive bra after surgery. I have noticed the difference between wearing one and not wearing one. (Especially for us larger breasted women).
Finding a post-op/ supportive bra online was quite difficult. I ended up buying one from Amazon but unfortunately, it wasn’t overly comfortable. (Don’t do what I did and forget to buy one). Find a bra well before your surgery when you are able to try them on comfortably and please bear in mind just how sensitive your breasts will be after surgery.
Your bra needs to be:
- Seam-free – you don’t want the seam irritating your wound.
- Soft material but also supportive
Also, did you know you can purchase post-op bras VAT free. According to M&S, they say:
“VAT EXEMPTION – Customers that have had surgery for breast cancer do not have to pay VAT on their post surgery bras. VAT is removed at checkout”M&S VAT Exemption
This, however, only seem to apply to some places, bear this in mind when/if purchasing online. Can’t speak for in-store.
I will update again soon, which will probably be once I’ve had my follow-up appointment with my surgeon.
I’ve had a restful and anxiety-free two weeks, it has been lovely not having to go up to the hospital for yet another appointment. Until the night before my follow-up appointment when I felt my nerves & anxiety levels rise again.
My dressing was removed and all looks good. The scar is much longer than I had envisioned. My histology report had not been completed, so my surgeon was unable to give me the results. For those who don’t know what a histology report is it is where the lab checks the area that was removed surrounding my lump for any stray cancer cells. The results will determine what further treatment is necessary and how much.
The results should be in next week, so my surgeon will call me on Tuesday with the results (rather than make me go to the hospital again) and I’m now being passed over to the Oncology team who will discuss my further treatment.
No Phone Call
No phone call has arrived from my surgeon, (it is now Thursday)? Yet, I did have a phone call on Tuesday from the clinic asking if my appt that day could be changed as one of the nurses was off sick. I explained I was told not to come to the hospital for my appt as my surgeon would phone me with the results. I was told this would be passed on to the nurse.
Since then, I’ve received a letter with a new appt with the breast clinic? My mind is now doing loop the loops! Does this mean my histology report is back and is not good news? Have they found more cancer cells and don’t want to give me this information over the phone? Is this another cock-up by admin? I’m not sure how much more I & my IBS can take right now.
Due to me now being diagnosed as anemic, my GP referred me to have some tests done. This entails a camera going both ends…..Oh that’ not the worst part, it’s the bloody 2 litres of laxative I’ve gotta drink the day before. I’ve been told they are literally impossible to drink. I’m seriously considering how the hell I’m going to cope with everything that is seemingly being chucked at me all at once.
Not sure that I can! I’m feeling that whirlwind emotion again!!
Histology Report Still Not Back
As you know the doctor didn’t phone me last week, therefore I still have had no results from my histology report. I did, however, receive a letter informing me of an appointment that was meant for today (1st of November 2021) but unfortunately due to contracting covid I am in the middle of isolation.
When I spoke to a nurse on the telephone last week regarding this, I did ask if my surgeon could phone me with the results as he was supposed to have done previously? She said she would look into it and I’ve heard no more. Today is my appointment date and I’m no further down the road! So I’m sitting here wondering if I will get a phone call.
On a side note, I have cancelled my anemia tests for now as I am in no position to cope with all of this at the same time.
For those that have been following my journey, you will notice I haven’t posted for some time. This was due to receiving some bad news when I did get to see my surgeon and in all honesty, I was so emotional, I couldn’t bring myself to write about it at the time. I was told that cancer cells were still present in my breast tissue and a mastectomy was the way forward! I’m sure you can understand the shock I was in. In a way, I was back to square one, again, needing surgery under a general anaesthetic and working out if my heart will cope!
My surgeon explained to me that he could do more local anaesthetic surgery to remove more tissue that contained the cancer cells (DCIS) but he was concerned that would not be enough to remove all cancer, therefore requiring a third surgery and still ending up having the conversation we were having at present. He went on to explain that he would speak with other anaesthetists at Brompton hospital (heart/lung specialists), where he would discuss my case and decide if I was a viable patient for general anaesthetic. I would also have to go for another risk assessment with another anaesthetist before a final decision would be made.
I was worried and scared the last time general anaesthetic was mentioned but this didn’t come close to how I was feeling right now. It looks like the only way forward is to have a mastectomy, which involves a general anaesthetic, my heart functions so poorly it is “highly” likely I would have a heart attack on the table and the surgeons/anaesthetists don’t know if they will be able to revive me. You need surgery to remove something that will kill you, yet the surgery itself may kill you! How does one process that?
It’s not me I’m worried about. it’s the people I’ll leave behind, my kids, husband, parents etc. Meaning, I have the surgery…I’m given an injection, I fall asleep, I know no more! But….. It’s everybody else, how will they cope, the trauma of losing a loved one & parent. That and so much more is what scares the bejesus out of me.
Normally, I’m a strong person, level-headed, positive attitude but this has knocked me for six! I’m terrified if the truth is known but I can’t let onto my family just how scared I am. I know how scared they all are and I don’t want to make them feel worse. I’m sure they know only too well what I must be feeling.
Feelings & Emotions
The hardest part for me has been not really having someone to talk to. Of course, I talk to my husband and best friend but how open and honest can I be with them knowing what I say may really upset them or worry them more than they are already?
This is where I feel outside help would benefit, I haven’t gone to my local cancer counselling unit as it’s very close to where I live. I know there will be people I know there and in all fairness, I want to keep in control of who does and doesn’t know about my condition. Yes, extremely contradictory considering my blog but again, I feel in control of this, I don’t believe they would know of my website.
I think that’s why I started my journal, documenting what I’ve gone through, my feelings, the rollercoaster ride this has taken me on and the upheaval of travelling to appointment after appointment, helps me deal with things. I won’t write unless the house is empty then I get out my microphone sit in front of my computer and put everything down. My hope is that this may help another person going through this.
Hubby has always said I would not be interrupting him or a nuisance if I wanted to do my blog while he is at his computer. That’s good to know but I don’t think I could be this open and honest knowing he could hear what I was saying. I know there is every possibility he will read this but that’s different, he’s not listening to what I am saying or here when I have broken down in tears while writing this. I don’t want to do that in front of him, I hope that makes sense to you.
Test After Test
In-between all of this, I had to go for a CT scan and a trial run at the radiotherapy department to make sure I could get on and off the scanner bed and I was able to lie still for the duration needed if/when I went for radiotherapy. The CT scan was to check my lymph node area, chest, and abdomen for any obvious signs of cancer. It was a contrast CT scan which if anyone has ever had one, you know how this momentarily makes you feel like you’re going to pee yourself. Not a pleasant experience to say the least but the nurses etc were brilliant with me and so patient.
Thankfully all good results, my CT scan came back showing no signs of cancer (outside of my breast) and my trial run at radiotherapy went better than anticipated. I was given the impression the radiotherapy scanner bed was going to be much worse than it actually was. I had envisioned some sort of torture machine where my arms were going to be pulled so far back over my head that my stomach and spine would arch almost to the ceiling lol in fact this couldn’t be further from the truth, the bed does look like a torture contraption but it is actually quite comfortable to lie on. There are stirrups above your head not behind your head and your arms and hands seem to fit into these beautifully. The stirrups are fully adjustable so there should be no reason for you to be uncomfortable in any way!
Anaesthetist Appointment Take Two
I was unsure what more information could be given/discussed with another anaesthetist, but like a good patient I followed my surgeon’s instructions and I went to the appointment. The long and short of it is this, there was no new information I could give and the only new info that I got from this appointment was that my surgeon had spoken with Brompton and as she put it “no one would touch it” (it, being me, my case!). As I’m sure you can imagine that gave me a lovely warm fuzzy feeling not! So does that mean a mastectomy can’t be done? In all fairness though, I kind of expected this response. At the end of the day, the previous anaesthetist very kindly and bluntly explained to me how risky putting me under a general anaesthetic would be.
Again I couldn’t help but feel like there was no light at the end of the tunnel and I was never going to get this beast out of me! I understand that you have to be informed fully about your treatment but I really do wish there were courses that were given to health professionals to help them understand how you tell patients bad news can affect, I mean really truly affect their mental health, if given in the wrong way.
I’m not saying everybody needs to be wrapped in cotton wool or mollycoddled but, when a health professional is explaining that no anaesthetist wants to “ touch it” when referring to you and your case, or being told,” there is no room for that” when a health professional is referring to your wheelchair, there are much better ways to say the same thing! You don’t have to make a patient feel like a lump of meat or a conveyor belt item!
I have been what can only be described as on autopilot, numb and zombie mode for the past couple of weeks. I am now heading for another appointment with my surgeon. It has been decided a second surgery will be performed, only it won’t be a mastectomy (phew) but instead, he will remove more tissue that surrounded the tumour in the hope that he will be able to remove all remaining cancer cells.
He explains that as I am now able to have radiotherapy (meaning I’m able to get on and off the bed etc) he wants to do a second surgery to remove more tissue in the hope this will be enough to remove all remaining cancer cells. I’m thinking he put it this way to spare my feelings as he probably didn’t want to say out loud that I’m not a viable case for GA (general anaesthetic).
Obviously, I’m relieved that a mastectomy is not happening at least not right now but what if this doesn’t remove all remaining cancer cells, he did mention the possibility of a third surgery. I can’t imagine he will keep doing surgery after surgery under local… Will he?
Second Surgery – 6th December 2021
Like last time I have to be in for 7:30 a.m. All patients wait in a cabin to be taken to the day surgery ward where we are booked in. Your blood pressure, temperature etc are all taken. Once this has all been done, you wait for your turn to go down to surgery. Within this time, you normally have an anaesthetist visit you to get you to sign a consent form and tell you more about what will happen. My surgeon again visited me to give me my local anaesthetic into my breast before going down to surgery as it takes approximately an hour for it to take effect.
The surgery went well but I was actually in quite a bit of pain when I went into the recovery ward. To the point, I had to ask for some pain relief. The first dose didn’t really do anything so they gave me another dose which took the edge off, made it bearable.
Once I had passed urine, had a sandwich and had a cup of tea, I was allowed to go home. While getting dressed I noticed my dressing was covered in blood as my wound had obviously been bleeding. It turns out this was quite normal and nothing really to worry about. The nurse changed the dressing, told me just to keep a check on it and I was allowed to go home. I got a fright though, as I thought maybe my stitches had opened, thankfully this was not the case.
I experienced more pain this time, last time I have to say I was pretty much pain-free the whole time. I did take paracetamol regularly for about 4 days. This time however I’m looking at the clock wondering when I can take my next dose of paracetamol as the pain was much more present. I wouldn’t say it was excruciating but it was definitely noticeable and bear in mind I’m a full-time wheelchair user so I’m not as active as an able-bodied person would be by.
I can relax in the knowledge that I probably won’t be called in for an appointment for at least 2 weeks. It takes approximately that long for my histology report to come back to my surgeon. Also, you have to wait approximately two weeks to have your dressing checked over and all being well removed. This makes my recovery much better.
We were so close to Christmas I really wasn’t expecting to be called in for an appointment until afterwards. I had hoped to have had my results in the hope it was good news and we could have a good worry-free Christmas. To my surprise though, I received a phone call Tuesday asking if I can come in the following day (Wednesday 22/12/21) to speak with the oncologist.
This got my mind wandering. As I was coming in to see the oncologist was this an indication that all the Cancer had been removed and I am now moving on to radiotherapy? In no way was I going to get my hopes up so I tried to put it out of my mind until at the appointment.
I’M CANCER-FREE!!! I seriously cannot get my head around this and I have to admit that this is the first time I have said those exact words out loud. I keep expecting the “but…” to come into play. It really hasn’t sunk in yet!
My oncologist explained that during my last surgery my surgeon managed to remove enough tissue that contained the last of the cancer cells. The drawback though, of not having a mastectomy is that there is still breast tissue left behind, this allows the risk of cancer returning. I can’t remember the percentage she mentioned regarding reoccurrence rates as my IBS was playing up. I was rushing backwards and forwards to the toilet so I don’t remember a great deal, unfortunately.
My oncologist said that as I have breast tissue remaining this does indeed make the risk greater than normal of cancer returning but as it stands there are no cancer cells left in my breast.
Radiotherapy for me is going to be intensive. Again due to the fact I didn’t have a mastectomy my surgeon wants to make sure everything is nuked lol. He has asked for all my lymph nodes and all of my right breast to receive radiotherapy. This means radiotherapy will be aimed at under my arm, the whole of my breast and my neck. I will have this every day for 3 weeks sometime in January. What a treat I have to look forward to!
I have also been put on a tablet to lower my oestrogen levels, as my type of cancer feeds off oestrogen. This is taken once a day for 5-years and I will have a mammogram annually. If my memory serves me right I believe I will also be shown how to examine my breasts as I am now more at risk of getting cancer again even in my other breast.
Radiotherapy Is Starting
On Wednesday (26th), I received a phone call asking me to come in for my 1st radiotherapy appointment the following day. I had less than 24-hours to prepare myself for this appointment. I was given no information, so I assumed (because I’d read on the Macmillan website) it was probably going to be for a CT scan.
Yes, It was for a CT scan. This was so the team could take detailed measurements of what areas needed radiotherapy treatment. They also record/measure your position so you can be in exactly the same position for future radiotherapy sessions.
This takes approximately 20 minutes to half an hour. The last thing to be done is to have your tiny dot tattoos. I mean they actually tattoo you! For those of you that have never had a tattoo, these are painless but permanent tiny dots. The dots are so small they are like pinheads. You may feel a little scratch but it is no worse than an injection and the job is done.
I can’t speak for other people’s situations but because I had surgery, radiotherapy normally takes place 4-6 weeks afterwards. I’m approximately at the 6-week mark, so everything seems to be running to schedule which is obviously good.
I’m apprehensive because I have read (stupidly) of other people’s experiences of radiotherapy. One woman’s story was quite horrific, to say the least. I’ve been told that common side effects can be:
- Redness of skin or discolouration
- Feeling like your breast has sunburn
Outside of the skin conditions, I suffer a lot of these already. So nothing new for me I suppose.
At the end of the day regardless of these side effects, it is a treatment that is imperative. Therefore, it is something that I feel needs to go ahead!
First Week of Radiotherapy Done!
As of tomorrow, I’m into my 2nd week of Radiotherapy. I started my radiotherapy last Thursday 917th Feb 2022), at this appointment, I was taken into an office to confirm that I was happy to go ahead with my treatment and given some information about skincare of my treatment area and all about what I could and couldn’t do. Things like:
- If possible shower instead of bath, they don’t like you to keep your skin in hot water for too long.
- Use non chemical shower/soap.
- When drying pat dry and don’t rub.
- Use roll on (not a spray) deodorants that don’t have chemicals.
- I was told to use E45 cream twice a day on the treatment area, which for me is breast, underarm and neck. I was told don’t use any other creams only E45.
I’m one week into my treatment and I have to say at present the only side effect I’m experiencing is tiredness. I suffer from fatigue at the best of times so it was no surprise for me to suffer extra tiredness.
The team are absolutely amazing, so friendly and helpful. They really do make you feel at ease while having your treatment. Unfortunately, the only drawback I have had to deal with is the waiting times. I don’t think I have ever been seen at my actual time of appointment. This is in no way a reflection on the staff’s capabilities it is unfortunate that some patients just take longer than others, myself included as I have to use their hoist to be able to get on/off the bed. Also, it didn’t help that 2 machines broke down through the week.
What Happens Inside The Room?
The information I give here is based on my treatment and my treatment alone, I can not describe any other patient’s treatment.
Once you’re called in, you get changed into a hospital gown (you only have to remove the top half) in one of the changing rooms. This gown then becomes yours for the duration of your *treatment. You take it home and bring it with you to every appointment. You’ve probably already been given a sliding mat when you had your CT scan. again, you bring this with you to every appointment.
You then go into the room/area where the radiotherapy machine sits over a metal bed.
The team then “lines you up” to the machine according to the measurements that were taken & recorded at your CT scan. This can take up to 10 minutes. The bed itself moves up/down and back and forth. This enables the team to get you into the perfect position for your treatment.
Once you are lined up perfectly everybody leaves the room and that’s when the machine moves around you and the bed to give you your treatment. The machine is not as noisy as an MRI but it does hum when in operation. The machine pivots from side to side and the head of the machine can often rotate but again, nothing intrusive. This takes approx a further 10-15 minutes.
Once your *session is over, the team come back into the room, get you safely off the bed and you’re free to get changed and go home. Then you repeat this every day (Mon – Fri) until your treatment has been completed. For me, this is 21 sessions.
- Session = Each appointment for radiotherapy
- Treatment = The duration of your sessions. I have 21 sessions over 4 weeks.
Two Weeks In of Radiotherapy
Last week’s radiotherapy was quite a nightmare for a few reasons. My anxiety was at an all-time high (understandably) which in turn made my IBS a real threat. Appointment times were delayed majorly due to machines breaking down and then having to play catch-up, so anything up to 2 hours waiting.
This week, however, has been a completely different experience. I decided to not take my tablets first thing in the morning, instead, take them when I get home. This has made a major difference to my nausea, anxiety and my IBS. At the time of writing this tomorrow is Thursday (23rd Feb) and this week has been really good (trying not to tempt fate) appointments have been running exactly to time and on Monday, I was leaving the hospital at the time of my appt.
I have to say hey I’m surprised I’ve done three days this week already, it does seem to have gone much quicker than last week but that probably has to do with the fact that I am feeling much better mentally and emotionally, I can see a light at the end of the tunnel. I keep telling myself one more week and three days, my treatments will have come to an end and I can ring that bell!
Three Weeks In of Radiotherapy
Ok, so I had to tempt fate! My IBS was on a full one. Monday, I thought I was going to have to turn around and go home I came so close to having an accident. My stress levels were sky high I can tell you. Tuesday, pretty much the same. This was really getting me down now! I decided to not eat/drink anything before leaving and the rest of the week went very well.
I say that but at the end of last week, I developed a sore under my right breast. It started to weep so I mentioned it to the team and they got a member of their review team to take a look. (The review team catch up with you near the end of your treatment to make sure all is ok). Thankfully this was normal and nothing to worry about. I was told to let them know if putting E45 cream on started to sting as this may indicate the skin has broken. I was offered a dressing but decided not to take it.
My breast has become sorer, preventing me from wearing a bra. It hurts to lie on that side so once again I’m not sleeping very well. The plus side is that it is quite normal and nothing to worry about and with three sessions left to go (at the time of writing this) it will all be over very soon.
My Treatment Has Changed
Last Wednesday (2/3/22) saw the end of my main treatment. Tomorrow, Thursday will be the start of my booster sessions (one week). Where my main sessions consisted of 4 areas being treated, it is now only 2. My surgeon decided to give me a booster to directly treat the area the lump had formed. I assume this is because I could have chemo due to my heart condition.
Changes To Your Body
My Oncologist informed me before any treatment started that it is normally week 3 of Radiotherapy treatment when you notice things changing on your body. For example redness of the skin, sunburn feeling, sores and of course fatigue. Just a heads up, skin discolouration can be permanent. Literally to the date I got all except for sunburn feeling (so far). Also things can get worse before getting better after treatment has finished. This lasts around the two week mark.
In my first week of treatment, I was very tired. The second week was mostly feeling drained to my IBS, last week was a very good week, I felt positive and not tired. This weekend, however, I have been extremely tired and lethargic. I’m hoping this will improve tomorrow.
*So it is now the day after my final session (yippeeee) and at present, I feel rather good. I’m a little tired due to lack of sleep last night. My breast has become taught and hard, so lying down in my fav position is painful. Having to sleep in a different position has caused pain in my back/neck.
I now have a distinct line around my breast where my skin has darkened. Helps to know where to put the cream I suppose lol.
As I come to the end of my treatment, I am amazed and thankful that I have been able to receive the treatments that I have. I’ve survived this awful beast, something that is extremely hard for me to comprehend. It has been one hell of a rollercoaster ride. One I hope to never repeat!
August 2021 was when I had been diagnosed. This feels a lifetime ago. Now, I’m 3 sessions away from my treatment ending, somewhere I really couldn’t envision. Every member of staff from my surgeon, breast nurse, receptionists, Oncologist, Radiographers and the lady who cleans the department who says hello every day she sees me have all been amazing, kind, considerate, patient and informative.
Dealing with breast cancer or any kind of illness is a rollercoaster ride of emotions. Don’t be hard on yourself or feel you have to be strong for everyone else’s sake (as I have). Yes I know, much easier said than done. Hindsight is a wonderful thing and I really do wish I had taken more time out for myself for a cry here and a cry there, punch a few pillows etc.
Frustration, tiredness and anger made me a nightmare to live with, just ask my husband. I let pride take over to the point I didn’t go to any Macmillan centres to talk about what I was going through, believing I could do this all by myself. I can’t help but feel this would have benefitted me greatly.
Treatment Has Finished
Yesterday was my last session and boy what an emotional day it was too. I was unsure as to whether or not I would ring “The Bell” but I did. All the nurses came to cheer me on and let me take a photo. I got quite emotional and cried. Arrived home, I cried, going to bed, I cried. I think it was all different emotions going through my mind and the sudden realisation that I had beat this, finally.
My husband made a comment about how this is now finally over and how we can now spend time recovering and moving forward. I understand what he means but unfortunately, this will stay with me for a very long time, (probably forever)! With every mammogram I now have, I will be fearful something will be found. Constantly checking my breasts for lumps. It will be never-ending for me (as an over-thinker).
Resting Is Paramount
Because of my disability and the way I have to lie on the metal bed, I was in a lot of pain last week with back and shoulder pain. I took painkillers before every session in preparation. If you’re not used to lying with your arms above your head (which I’m sure most of us are not) this will can put a strain on your muscles. (I could have this wrong, I thought I was told I would be given some exercises to help with muscle pain but I haven’t received any). I’m quite used to having pain and pretty knowledgeable as to what works for me so I’ve devised my own.
I spent the whole weekend resting, (no sessions at the weekends, yippee) I just rested in front of the TV. Now I know it’s not easy for everybody to be able to sit and literally do nothing to recover from a week of radiotherapy but I do believe this is one of the other main reasons I am coping so well this week. You don’t realise how Radiotherapy is taxing on the body as you feel no pain whatsoever, the sessions are painless and only moments long but fatigue is a real thing. I’ve come home and slept for a couple of hours and then slept all night. So please rest as much as possible.
I’ve been using E45 cream on my breast, scar and neck twice a day as advised by the hospital. (DO NOT use any creams before your session, the radiographers say to leave at least 2 hours between applying cream and your session).
I’ve noticed my breast has taken on a very slightly pink colour. It looks very similar to just coming in from sitting in the sun for a little while, not sunburn but just a pink tinge. I do expect this to get worse as skin discolouration is one of the common side effects. And indeed it has gotten a little worse. I bought Aloe Vera Gel in anticipation of some sunburn feeling but to date, this has not happened.
As for everything else, all is doing good.
First Annual Check-Up
I had my 1st annual meeting with my breast clinic a couple of days ago. I was very nervous as I didn’t really know what it was going to entail. Thankfully my meeting was with the breast nurse I had been treated by throughout my breast cancer journey. It was great to see a familiar face and not have to deal with someone new.
She asked me if I had received my pack which I said yes (but I have to confess, never really looked at it, I kept meaning to but time just slipped by). Anyway, she explained how I (like all breast cancer patients) I am now on a 5-year plan with the clinic. This entails:
- Mamogram every year for the next 5 years
- A phone/email away for any concerns or changes in my breast, or chest area that I may have
- Ability to come to the clinic for checks with any changes I may find
We discussed the hormone suppressant tablet that I am on (Anastrozole) which is a post-menopause tablet given to suppress the hormones that CAN (in my case) aid cancer regrowth. We discussed the side effects, what to look out for and more importantly, when to be worried.
Anastrozole – Anastrozole is a type of hormone treatment. It works by lowering the levels of oestrogen hormones in your body. It is mainly prescribed for women who have been through the menopause and have a type of cancer called hormone-dependent breast cancer.Anastrozole: a medicine used to treat breast cancer – NHS (www.nhs.uk)
Anastrozole – Common side effects
Like all medicines, anastrozole can cause side effects, although not everyone gets them.
Anastrozole may affect your blood pressure, cholesterol and bone density. Your doctor will monitor this carefully and can recommend additional treatment if needed. Menopause symptoms usually improve during the first few months of taking anastrozole.
These common side effects happen in more than 1 in 100 people.
- hot flushes and sweating – I get these on and off, thankfully they have eased off
- dry or itchy vagina and genitals, bleeding from your vagina
- difficulty sleeping – I very much find this an issue
- feeling very tired – I suffer this more so due to my heart condition and the tablets I’m on for that too
- feeling or being sick, loss of appetite
- mild aches in your muscles and bones – Yes, I get this too
- numb or tingling hands
- changes to your skin, including a mild rash
- hair loss or thinning hair
- low mood or depression – Due to lack of sleep and aches and pains, low mood is a given I would say. I do get very grumpy and irritable too.
When my treatment had finished, my Oncologist went to great lengths to make sure I was put on the right medication. My disability and heart condition played a big factor in which tablet could/should be given to me. Due to this, I was sent for a bone density scan. Well, I was meant to have one!
Bone Density Scan
I received a phone call regarding my appointment after my treatment, I explained (as I always have to) that I am a wheelchair user and is that going to be a problem. I was told yes, it was a problem and my appointment was cancelled. Yep, just like that!
Sometime in the past, I remembered having a previous bone density scan, so surely, I could be scanned this time! So, me being me, didn’t let this lie. I took it upon myself to visit the bone density scanning department and speak with them directly.
After explaining to the receptionist why I was there and another lady came to speak with me. I assume she was the Radiographer. I distinctly got the impression she didn’t take kindly to me turning up out of the blue to question why I was unable (As a wheelchair user) to have my scan. Sorry, but I didn’t take being struck off in the fashion I was too kindly either!!
Anyway, I received a further phone call telling me that an appointment would go ahead and be made for me. I heard nothing more. At my appointment the other day with the breast clinic nurse, she explained to me that for some unknown reason, my appointment had been cancelled Again! I’m not holding my breath.
Outside of that, I came away feeling very confident in knowing I have a great team around me at the breast clinic and if I am concerned about anything at all, I can phone or email them.
I would love to recommend a Facebook Group that was a great support group with plenty of advice but unfortunately, I can’t do that. I attempted to join a couple. One group I tried to join asked a lot of questions about where I was being treated and what kind of cancer I have along with many other questions. I answered them, then had a convo via messenger with an admin. I was told I would be added to the group later that day or the following day. Never happened!
Almost a week later I was still waiting. Yes, I could have chased them up but in all fairness, why should I? I’ve just been diagnosed with cancer, my mind is racing and I am attending appointment after appointment. The last thing I want to be doing is chasing up some group admin on Facebook. If answering their barrage of questions and having a conversation with an admin is not enough, then screw it!! Unfortunately, other groups of the same nature seem to want to know your whole story also, so I didn’t bother.
Help & Support
Macmillan Cancer Support – https://www.macmillan.org.uk/
Cancer Research UK – https://www.cancerresearchuk.org/
Breast Cancer Now Org – https://breastcancernow.org/
Post Operative Bras
Nicola Jane – Post-Op Bras – https://www.nicolajane.com/mastectomy/bras/post-reconstruction/?page=1
Belle Lingerie – Post-Op Bras – https://www.belle-lingerie.co.uk/g2352/lingerie/style/mastectomy-and-post-operation-care-bras/?pagestoshow=3
Aseniza Sports Bra Seamless Racerback Medium-Impact (Amazon) – I Bought the twin pack
Of all the bras I have tried (and I’ve tried a lot), these are the ones that work for me. My breast has hard scar tissue inside which can hurt with other bras – Marks & Spencer – 3pk Cotton & Lace Non Wired Full Cup Bras A-E: 3pk Cotton & Lace Non Wired Full Cup Bras A-E | M&S Collection | M&S (marksandspencer.com)
Everything I have talked about in my journey has been my own experiences. Please do not treat my advice as medical certainty. Please discuss any concerns/treatment with your own Breast Clinic, Oncologist and Radiotherapy teams.
If you are someone going through breast cancer and have any questions whatsoever, please get in touch. Sometimes, we just need someone who has gone/going through this to talk to.
Cazbarr is a full-time wheelchair user, who was born with a disability called Arthrogryposis. Primarily she blogs about her disability, her experiences holidaying as a full-time wheelchair user, along with honest products & service reviews.
If you would like to work with Cazbarr, just drop her line on the Contact page.