Woman holding a red rose over her naked right breast

Grade 3 Breast Cancer. I Share My Journey As I Fight Through It!

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). Im 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.

My Mammogram

A machine (mammography) that performs mammograms

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 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

Glass vials surrounding a pink breast cancer aware ribbon

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

A 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.

Surgeon’s Appointment

Surgeon in theatre looking at her hands

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.

Feeling Confident

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!

My Ailments

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.

Echocardiogram

Echocardiogram machine scanning the heart

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.

Surgeon Appointment

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.

Being Canulated

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.

Wednesday 15/9/21

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!

Exhausted

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!

Sunday 26/9/21

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.

Thursday 30/9/21

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).

Anaesthetist Appointment

Hospital patient lying on a hospital bed with surgeon standing next to him with his hand on the patients shoulder

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.

Risks Involved

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!

Bedside Manner

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

Person covering their ears with question mark behind them

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!

Phone Call

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:

  1. They could die on the table
  2. Their heart has deteriorated so much it looks like they’re gonna need a ICD/pacemaker
  3. 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
Surgeons standing over an operating table with over head lights

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!!

My Carer/Husband

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!

Bed Issues

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.

Recovery

Teddy bear with a cold holding a tissue with thermometer on his lap

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:

  • Wire-free,
  • 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.

Follow-Up Appointment

Patient sitting across a desk from a doctor wearing a white coat.

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.

More Tests

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.

Helpful Links

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 one group. They asked a lot of questions about where I was being treated, 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 and 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, 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

If you would like to work with me or anything you would like me to blog about, don’t hesitate to Contact Me.

About Cazbarr

Founder at | Website | My Blogs

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.