Tag Archives: breast cancer

9 Months On

I realised today that it is almost 9 months since I had my bilateral mastectomy operation. I originally thought I would post a ‘6 months on’ update but that was basically the week before my implant swap operation in December so it seemed a bit redundant. I saw Smithers last week though and was finally signed off as essentially ‘act as normal’. I am allowed to do whatever exercise I would like and have moved on to just general check ups with him every 6 months. I’m still seeing the physio for a related neck / shoulder problem but that’s improving too so now seems a good time to look back and talk about how I feel about it all now the actual stabbing and chopping bits off etc has stopped.

So how do I feel?

Physically – I’m ok. The surgery in December was a lot easier than the original operation obviously but it did cause me some issues. I was not able to raise my arms above shoulder height for 6 weeks and also had to wear a sports bra 24/7 for that time period. Once I was free to move my arms a bit more I realised I had some mobility issues. Basically my left side is knackered. It is not surprising – I’ve had 5 operations and the left side was involved in all of them. I couldn’t stretch my arm up properly and to compensate I was sort of hitching my shoulder up. This has caused problems with my neck. Pretty painful and also has been giving me horrible headaches. When it got to the point I was up crying in the night because it hurt to lay in bed I decided enough was enough and called in the physiotherapists again. I initially saw the one who specialises in breast cancer surgery patients and she did wondrous things to my armpit which has massively improved the mobility issues. She then said I needed to come back and see her AND the specialist neck physio. So a week later I was back being variously pummelled by both of them. The neck specialist is great though. She did some pressure point stuff with my head which was horrific while she was doing it but has definitely helped with my headaches.

Other than that it has just been a matter of getting used to the change in my body. It is almost impossible to describe how it feels having bits of yourself hacked off and replaced with fake stuff. The new implants are more comfortable than the expanders were – but they still don’t really feel part of me. It’s not like I am constantly aware of them or in massive pain – in fact large parts of me are numb now – but depending on what I am doing it can feel very very odd. If I am using the muscles that have been moved around that is when it feels very strange and I am really aware of it – say if I am carrying something. I am hoping this will improve now I am allowed to do some exercise. I need to be careful though. The physio said that if I want to start going swimming I need to do just a couple of lengths and then revert to the ‘kicking with float’ initially – work up to doing more with my arms slowly. It is really frustrating but I know that doing too much too soon is a BAD idea and will almost certainly cause more problems with my neck so I will follow orders. What I actually need to do is break out the physio band things they gave me last time and start doing the muscle strengthening exercises every day. It helped loads after the last op so I expect it will again.

In terms of how the foobs actually look… well in clothes I don’t think I look like too much of a freak. I would ask other people but I don’t know if anyone would actually tell me truthfully. I have noticed a difference in how things like vest tops look across the foob area. I think it is because they are sort of individual blobs stuck on my chest – they don’t squidge together like normal boobs do and so the material has to stretch across the gap and sort of wrinkles. Probably no one else even notices but it has been bugging me. I need to go shopping for underwear really. I don’t need a bra at all in terms of support but it helps with the wrinkling and if I want to wear anything light you can see the massive scars through the material. I had to wear sports bras after my recent operation and I also have some of the comfort bras you can get everywhere now and a few normal ones from Asda that I got when I had the expanders – various different sizes! – but I don’t have any ‘nice’ ones. Smithers says he hopes the current foobs will last for about 10 years though so I think I can safely go shopping now for some fancier options. Maybe I will do that this week. Not really sure what to get. I don’t need underwire but non-underwire ones tend to be ugly. Like the comfort bras – MASSIVE thick straps. Not pretty.

Out of clothes obviously I do look pretty freakish. I have scars essentially where your underwire would be – about 6-7 inches long, and then also vertically up the middle from the bottom to where nipples should be but aren’t. The vertical ones have healed pretty well considering they have been opened up twice (I was pleasantly surprised after my op in December – I thought it would look far messier) but the ones underneath are pretty hardcore. They have healed well – they are just big. The scars affect the shape of the foobs too obviously – and as I said before you can see them through certain lighter clothes. I’m ok with the scars though. I know a lot of ladies really struggle with even their partners seeing them but I don’t have any issues with that. My other half doesn’t seem repulsed and I don’t want to hide away from him. In a way I’m quite proud of my scars. They remind me of what I’ve done to protect myself and I am quite proud of myself for the decision I made to have the most extreme surgery I could even before I knew my genetics results. It was not an easy decision at all but I think it was the right one for me. I remember receiving a mastectomy information pack after one of my appointments with Smithers. It was when I went back towards the end of chemo to start talking about it again. I took the info pack into the toilet to open it in private and ended up on the floor just sobbing and rocking. It was a low point. Obviously I had known for months at that point what I would be having but there is something about seeing it in black and white in front of you that really makes it feel real. Didn’t help that I was a physical and emotional ruin from chemo either… but I digress. The point is that it was a horrific time but I didn’t take the ‘easier’ option of trying the breast conserving surgery one more time – and I am proud of myself for making the tough decisions when I was dealing with so much already.

Which I guess brings me quite neatly on to my mental state about the whole surgery side of this madness. I don’t really know what to say about that. I’m generally ok but I am definitely still dealing with the experience. I find myself thinking about it a lot at the moment. For instance the other night I could not sleep and I was essentially replaying the days directly after my mastectomy operation. It is still very vivid in my memory. I remember the horrible experience of going back to surgery for the hematoma and how I felt the day after that when I was so weak from losing all the blood. I remember having multiple blood tests a day and how badly my veins deal with intravenous antibiotics. I was driving along in the car the other day and randomly started thinking about why intravenous antibiotics hurt so much and remembered that the tubing they used for my PICC line was the same size they use for babies as that’s how delicate my veins are. That’s why it hurt. It is not like I want to dwell on these experiences but it is like my brain is still trying to process what happened. It was a huge experience to go through and even now it just seems really surreal but I do get these moments of sort of blinding clarity where I realise what has happened and frankly, it was fucking shit. One of the things I still struggle with is that by choice I have been private about my surgery. Very few people know the ins and outs. This is fine but there is a weird feeling I get when I’m around people who have no idea about my surgery. I don’t want to tell them – but I kind of do want them to appreciate what I’ve dealt with. It is difficult to explain, but it just feels wrong that they could have no idea about this massive experience I have gone through.

Another element is intimacy. I’m not going to say much about this as I think my other half deserves a bit of privacy – but it has obviously been something we’ve both had to deal with which has had its challenges. I also struggle with the fact that obviously I would never be able to breast feed. This is dwarfed by the fact I am probably infertile though so it’s not something I dwell on much.

It has also really affected my confidence too. I am very up and down. Partly I feel like I have handled this massive experience so why the hell would I worry about trivial things. Partly though I feel really socially inept and self conscious. Throughout the whole thing I have ended up making my world smaller – even more so after the surgery than chemo because I was off work and home alone. Now I am back at work basically full time and physically recovered I am trying to expand my world again but this has its challenges. I’m working on it…

So I think that is everything covered. I am obviously really happy that the operations are over for now. I could have elective surgery to have fake nipples created but I’ve decided not to bother with that at the moment. It would mean another general anaesthetic and more recovery and I’ve just had enough. Maybe later I’ll change my mind but I think I’ll give myself a bit more time acquainting myself with the current foobs before making any changes. I’m also not sure how I would explain that to my boss. I don’t want to talk to him about nipples. I think I would just have to say I needed revision surgery! I am however also pleased that I am going back to see Smithers for a check up in May though. He and my oncologist are like a security blanket. I will see them alternately every 6 months – along with the geneticist and gynaecologist in between. You’d think I would not want to see them but in a way it is reassuring that these people are on my side. There is no point pretending it is all over because it just doesn’t work like that – and seeing Smithers always makes me feel a bit better. He is a wonderful man and I can’t thank him enough for what he has done for me. No one would want bilateral mastectomy but if you are having to – I can highly recommend his skills… and personality. What a legend…

 

 


Hospital Recovery

So I think I left the last post at the evening I had my surprise extra surgery… I have left it a bit too long to give a blow by blow account of what happened over the next week I was in the hospital but to be honest, it wouldn’t be very exciting if i did.

Just as a recap – I had main surgery on Wednesday 29th May and then hematoma surgery on Thursday 30th May.

I was in a  lot less pain on the Friday. I’m not very good at describing or gauging pain and when they had asked me on thursday if it was moderate / severe I had been saying moderate. Turns out it was more on the severe side – I assume because of the humungous collection of blood in the foob! I was very weak though and although I got up for a wash and to go to the loo I did not do a lot more. M visited before work and also in the evening and one of the physiotherapist turned up with a leaflet about exercises but I really wasn’t all that interested in exercising at that point. I had lots of blood tests as had lost so much blood I was now very very anemic. I had been anyway due to the taxotere chemo but this was a whole new level of weak and feeble. I do remember that the IV antibiotics in the afternoon hurt  like hell and so in the evening I said I wanted the canula moved from my hand again. The nurse was a bit shitty about it but the blood guy (Lazlo) was lovely and moved it up to the crook of my elbow which was much better.

On the Saturday I’m not sure why but I felt really very upset in the morning. I don’t know if it was my own paranoia but I felt like the nurses thought I was malingering or being difficult. I think it started with the nurse being shitty about the canula the night before and my just generally feeling like crap I wasn’t in a very good place to just brush it off – so it all got a bit overwhelming and I ended up bursting into tears when the physio turned up to talk about exercises. I suppose it was to be expected at some point but then physio buggered off and nurse came in and said “are you feeling a bit tearful, why is that??” which I took as “what the hell is wrong, stop being pathetic”. In hindsite, she was probably trying to be nice but I am not one to cry in front of people so having an audience at all was a bad thing – the last thing I wanted to do was talk about it all with the nurse. As it happens I did talk to the same nurse a day later and explained my various woes – which was good because I then felt like she wouldn’t think I was just being weird. Anyway, M arrived at about 10am and I felt a lot happier with him there. I put my own clothes on for the first time and we just spent the day together. Smithers had also come to see me that morning and explained that I was very anemic and if my Hb level went below ‘8’ I would need a blood tranfusion. At that point, and for most of my hospital stay my level was 8.1 so I just dodged the transfusion but this does explain why I felt so feeble!

 

The next few days were very similar – M visited every day and my mum got back from her holiday and came to see me on the sunday which was nice. I ventured outside briefly with M on the sunday too but I was so self conscious and feeble that it was a short lived venture. Smithers came to see me a few times and was happy with foobs but not aneamia situation. I had what seemed like constant blood tests to check my hb levels and also my BP / temperature etc. They moved me onto oral antibiotics which was much nicer than the IV kind. Finally monday came and the nurse said Smithers would be in to assess me but things were looking good for me to go home. Hurrah!

 

Firstly though I had to have the drains removed. I was a bit worried this would hurt but with all procedures like this I just get on with it as it has to be done. She also gave me an extra boost of painkillers beforehand which was good! I had to lie on the bed and she removed the stitches (yep, they’re stitched into your skin) then she had me take deep breaths as she pulled the tubing out. The tubing was surprisingly long and it did sting – but I would not say it was painful as such. She repeated the process on the other side and I was drain free. I have to say, I did not feel the relief that a lot of other people say they did on being drain free. I was glad they were gone as they are annoying to carry round and generally a bit grim – but sensation wise, it wasn’t much different.

 

We had been told to expect Smithers ‘after lunch’ so M arrived at about 13:00. Long story short, we actually had to wait until about 19:30 for him to rock up but they did tell us this at about 14:00 so M left again to do some shopping etc.  Smithers did finally arrive though and I was indeed allowed to go home with a bag full of pills – painkillers, iron and antibiotics. I was so happy to be going home and mainly to be able to shower properly and wash my hair!

 


Theatre & The Encore

It didn’t entirely go to plan – but what “had to be done” has indeed been done. Old boobs that were trying to kill me replaced with new foobs (fake-boobs) in the making. There was a bit of a scary horrible complication which I will get into in a bit and I’ve ended up in a rather feeble state, but it got done and I am finally home again. Hurrah!

So… how did it all go down? Let me tell you… sorry this might be a bit long and there won’t be any pictures!

Wednesday 29th May –

My check in time at the hospital was 11am so I got up in the morning, had a shower and faffed around packing my things until 10:20ish when we set off. I was allowed to eat till 07:30 but I didn’t have any breakfast on account of still being in bed and feeling a bit sicky and nervous anyway. Last drink of water was at 10:20 – and it was quite some time till I got to have another one. arrived at the hospital in good time and got taken up to my room quite quickly. Luckily I now qualify for private healthcare at work so was at a Spire hospital which I’m sure was a much nicer environment that the NHS ward would have been. I would have had the same surgeon etc but I appreciate privacy and nurses who are not run off their feet!  So we were settled in and told a nurse would come to do the paperwork / pre op observations, then I’d see anesthetist and then my Surgeon Mr Smith (who we will be calling Smithers from now on) would come to do the consent forms and mark me up for surgery. I was the only person Smithers was operating on at the Spire that day but he was at the multi-disciplinary clinic at the NHS hospital that morning so basically – once he arrived it was a go. Originally they said they expected him about lunch time and maybe I would go to theatre around 13:30 / 14:00.

The nurse came and did the requisite pulse / blood pressure checks and another lady went through my forms and dished out the anti-embolism stockings / gown. At some stage I put them on – I can’t remember if it was before or after anesthetist came in. Before I think – but they let me keep my normal clothes on for quite a while which was a nice difference to when I had my other two ops at the NHS hospital. Straight into your gown there – which isn’t very comfortable. Anyway, we were waiting and waiting and as 14:00 approached and Smithers hadn’t arrived yet I was getting a bit stressed. They didn’t know where he was and couldn’t get hold of him. I started worrying that he wasn’t going to turn up at all – but the nurse said it would definitely be happening that day and knowing him as I do – I should have expected him to be late. Don’t get me wrong, I think he’s great – it’s just that he likes to give people the time they need and I’ve been told he’s known for taking his time over surgery too as he wants everything to be as perfect as they can be. Good attributes in a Surgeon / Consultant I think – but it does mean he’s always late! Not once have i felt rushed by him though – and I’m sure I’ve overran on the alloted time at some consultations. As he had a clinic in the morning I’m sure he was giving other people the time they needed to talk things through. I do wonder about those people – they won’t have known he was heading my way to do an operation that perhaps they are considering too. I’ve been to those clinics and it never occurred to me that he would be operating in the afternoon. Man works hard.

We just sat in the room and had the news on the tv while we waited. M got some drinks from the machine and went on about how nice the tea was… even offered to get me one before remembering I was nil by mouth and realising I probably didn’t need to hear him raving about PG Tips! The news was mainly about the suspected abduction of Georgia Williams (can’t seem to find a report from 29th May) and the trial regarding Mark Bridger / April Jones . I did think to myself that although I wasn’t having a good day – at least I wasn’t involved in any kind of abduction / murder so things could be worse!

Anyway, we saw Smithers arrive in his car with about 400 files at about 14:30 I think and then there was a flurry of activity. Anethetist rocked up and did her bit. She was very nice – explained what would happen and checked out my airway etc. All stuff  I was used to from the other ops. As much as I wish I didn’t have two pointless operations last year it did mean I wasn’t nervous just about having ‘an operation’ or the anaesthetic and was familiar with the process. I think that probably helped – although I didn’t feel too nervous anyway. I was back in the surreal world of “is this really happening??!”. It was not long then until Smithers arrived with his ruler / marker pen and consent form. We confirmed what surgery was being done and I signed the form. He then spent quite a while measuring and drawing on my boobs with marker pen – another surreal experience. He took a couple of pictures (boobs only) before and after and then I had to turn the gown round the other way and just wait for the nurse to come and collect me to take me down to surgery. She arrived quickly and I was on the table in the anaesthetic room on the dot of 13:00 having kissed M goodbye. I did feel nervous now and hate the time between them hooking you up and putting you under as I am not great at small talk at the best of times. One of the nurses / assistants did start saying how “there is no better man” than Mr Smith though which I suppose is nice to hear at that point and is something I’ve been hearing a lot from a lot of different people. There was a bit of a wait as the actual anesthetist said she didn’t realise I’d arrived and was thinking it was taking a long time – I’m sure we walked past her on the way in but never mind! She started the process off with something that just made me feel a bit high and I remember them saying to think about something nice – all I could come up with was swimming with Dolphins and M in Florida but really I was thinking “oh shit, here we go!” so it wasn’t quite the nice relaxing feeling a remember from the last fe GA’s I’ve had to be honest.

Next I knew I was waking up in the recovery bit and felt like absolute hell. There was a clock on the wall and  I think it said 20:00… I was in quite a lot of pain and felt very sick. They gave me a bit of water and then I was sick – and I actually found the sickness surprisingly upsetting. It completely took me back to my FEC induced vomiting and my brain panicked a bit because that was so horrendous I never want to feel like it again. They gave me more pain killers and some anti-sickness and I remember saying I didn’t want Ondansetron because it’s rubbish and makes you constipated or anything involving steroids. I really do hate steroids!

I was in the recovery bit for quite a while and at some point Smithers was there and said it had gone well. I don’t entirely remember seeing him but I do remember hearing him say that. Went back to my room at about 21:30 where M was waiting for me. I had the oxygen tubes in my nose and still felt very wonky. It was completely different to waking up after the shorter WLE operations last year where I was pretty lucid and went home the same day. I’d had some opiate based painkillers and all I remember is telling M about being sick. I’m not sure what time he left to be honest. Spent the night having observations taken at least every hour and things injected / administered. It wasn’t very restful! The nurse did take the oxygen out at some point which made things more comfortable. I did have to have a wee in the night which meant using the commode which is obviously lovely – but I was pretty pleased not to have a catheter. Neither M or I can remember if it was that evening or the next morning that they moved the canula from my hand to the crook of my arm. My veins are absolutely hopeless and when they tried to put in the IV antibiotics it hurt like hell so had to be moved. This was to be an ongoing theme… I actually have a new found appreciation for my chemo PICC line. The chemo nurse was damn right – my veins would never have coped with chemo via a canula.

Thursday 30th May –

So that night was a bit rubbish but I felt a bit brighter the following morning although still in pain. I had a blood test taken and various pills and breakfast arrived at 7:30ish. I had a little bit of melon and toast – as I had come back late and felt so sick I had not had anything to eat the day before and I’d had no breakfast either so you’d think I would have been starving but i really didn’t want very much. M visited early and then went off to work and I was just in my bed. The food lady came and I ordered a ommelette for lunch and chicken wrap for dinner. After breakfast a nurse came and gave me an injection in my stomach (tinzaparin – thins the blood / helps with circulation) helped me have a wash and I went to the loo for a wee and braved looking in the mirror. It wasn’t very pleasant seeing my mangled form but it was as expected and I managed not to have a crisis. The nurse started asking about my cancer and if it ran in the family and then said “do you mind talking about this” and for once I said I’d prefer not to. It just isn’t a very cheerful story and I didn’t really feel up to explaining it all and chatting about chemo. It might be interesting for other people but it’s like re-living it all the time which is a bit rubbish. I felt a bit bad though as she came back later and said sorry and did the “do you feel depressed” / “we’ve got people you can talk to” thing… so then I did end up having to talk about it all a bit and explain why I didn’t want to talk about it and how I thought my mood was a pretty standard response to a shit set of circumstances…

They kept asking about my pain and was it moderate / severe etc and I discovered that I find it very difficult to guage pain. I was variously given paracetamol, codeine and oramorph… not sure if I had some tramadol that day – I don’t think I did.

Anyway. A physiotherapist also appeared and got me to move my arms / shoulders / neck a bit and said she thought I had good movement which I was happy about. Then about three nurses trooped in and looked at me and asked how I felt etc – I think one of them was the pharmacist. It all got a bit confusing who all the visitors were to be honest – and in between the nurses did my obs and checked the wounds regularly. Lunch arrived at about 12:30 and I had half the omelette and a fruit salad. I didn’t have much of an appetite still but the food was very nice and I really enjoyed the fruit.

After lunch I was left alone a bit more and apart from the obs being taken I really just rested in my bed. I did a few puzzles and then planked out until dinner arrived at 17:30ish. I woke up feeling really rough but felt I should try to eat to forced down half a wrap and a bit of sorbet and then M arrived. I felt really sick at this point and he has now said that immediately he knew something was wrong. I kept saying I felt sick after eating and I thought maybe the oramorph had something to do with it. I got up to go to the loo and while I was in there noticed my left foob had swelled up huge and was rock hard. I don’t know how I hadn’t noticed it before and barely made it back to the bed – came over all hot and sweaty and really sick, I felt realy very ill. I was about to press the buzzer but M didn’t wait for me to decide what to do and had already gone to nurses station to get someone. There was a flurry of activity and they were obviously concerned. Thankfully Smithers was downstairs running a clinic so they called him on the phone and he arrived pronto to have a look and announce that I had “had a bleed”.

My response was “that doesn’t sound good” and he agreed that it wasn’t great. I was bleeding internally and was to be taken back to theatre, left side opened up again and have the hematoma drained. I remember just looking at him and saying “will it be ok?” as I was so worried the whole thing was going to fail but he said yes it would be ok. I also remember asking about if I had to tell the insurance and he said just not to worry about that! It is funny what you think of in these situations. It wasn’t funny at all at the time though. He had to call in the on call anesthetist so I had to wait for him to rock up and it hurt like a bitch. Smithers had me sign another consent form and they did give me pain relief. I then became absolutely exhausted – I kept falling in and out of sleep and really wasn’t very lucid. Poor M had to just watch me flake out, be rushed off to theatre and have to wait for me to come back. It was horrible for both of us on many levels! I now understand why I was so tired and losing the plot – it was due to the blood loss. More on that later.

I went off to theatre at 20:20 – got wheeled down in the bed this time instead of walking! As I was going M bless him made the point that I’d had a bad time coming round the day before and they said they’d seen the notes and were prepared with the antisickness and wotnot. Got wheeled straight into the anaesthetic room where a new anethestist asked a few questions and said they would start me off with *something* and would then move the canula to my hand which I remember thinking “oh poo.. that’ll hurt”. So they hooked me up, he injected something, put the oxygen mask on me and then they took me into theatre while I was still awake (in a ‘I’m high’ fashion) and moved me onto the table. This wasn’t very nice – you don’t normally see theatre at all and the “one two three lift” thing is what you see them do on tv on those emergency programs. The theatre room seemed really big but randomly the table felt really small. I was sparko shortly after this and found myself waking up in the recovery room again.

Much better this time – no puking and in less pain. Smithers  was there and they were discussing my blood count and whether I’d need a transfusion. I remember hearing that if it went below 80 I would need one. Smithers then went – I’ve since found out he went to speak to M and explain it all – and came back to say he’d lost his keys! I had a couple of people in with me and could hear them talking – he eventually found his keys in the scrubs bin! I felt a bit bad that everyone had to stay so late for me but they were lovely about it. I went back up to the room at about 22:30 and was very happy to see M although I was so knackered I don’t think I made that clear at the time! He stayed for a little bit and then left me to rest. I think he was emotionally a bit ruined by it all and had had a long day himself what with visiting me in the morning, going to work and then it all kicking off in the evening.

So it was another night of obs and commodes and bloody painful IV antibiotics as they had moved the canula back to my hand as promised. It is not at all how I (or any of us I don’t think) had envisaged the day panning out… I really would advise avoiding hematoma’s if at all possible. They can put a real downer on your day!

To be continued…


“It has to be done”

I swear if one more person says “It has to be done” to me today I will stab them in the eye with a biro… or maybe set fire to their nostril hair and force them to snort sambuca.

 

It’s surgery day tomorrow. Of all people –  I am more than aware that “It has to be done”. That’s why I’ve spent the last few months attending various surgeon, nurse and psychologist appointments to convince everyone to chop off my boobs and agree on how to reconstruct them afterwards. It’s not something I’d be doing if I didn’t have to.

 

So how am I feeling? Slightly psychotic at this point. I’m internalising it though so hopefully no one else has clocked it. I have spent a large part of my bank holidy weekend trying to find sodding button up PJ’s that aren’t lurid, silk or costing £40. Oh, and that are short sleeved as I’m still in the world of the hot flush. Call me a skinflint but I’m not shelling out that much for something I don’t want and what I want is surprisingly hard to find. It’s bad enough that I’m going to have to pay for part of the aneasthetists bill for putting me under but at least that is something you wouldn’t want to scrimp on! Friend to the rescue re the PJ’s though – suggested I get mens shirts which was a great shout. Got a couple in Primark – cheap and cheerful and much less stressful than actual PJ shopping.

 

Other than the PJ trauma  I have been up and down on the emotional front. Got the call last week to confirm I am indeed a BRCA2 mutant which obviously hasn’t helped with the positivity. I’ll write more about that another day but lets just say there was a lot of crying.  At least I know now that bilateral mastectomy (mx) is completely the ‘right’ choice. Doesn’t make it any better but I am vindicated and would like to go and point this out to my original surgeon who implied I was over reacting when I first asked if I should consider it due to my family history. I think the answer is a resounding YES.  What a nob that man was.

 

In terms of the actual surgery though I just can’t believe it is actually happening. I don’t know when my life became so ridiculous that this is really actually happening. This is what you read about other people having done and you think “poor them” and have another biscuit and forget about it. I mean diagnosis and original surgery and IVF and chemotherapy have all been surreal – but this is a whole new level of freakish shit that frankly I want no part of… but obviously I don’t get that option.

 

I don’t really know where this post is going – I don’t exactly have a point. I suppose I should say what I am having done. Tomorrow I am having bilateral mx with immediate reconstruction with expander implants. The reconstruction isn’t all that immediate imo though as the expanders will then be expanded over about 6 – 8 weeks and I will need at least one more surgery in about 6 months time to swap to permenant implants.  See – it’s utterly fucking ridiculous. May I wallow in self pity for a second and ask what on earth I did to deserve this? I’m not sure but it must have been pretty bad.

 

I guess I should try to name some positives. Erm… well hopefully this means I won’t get a recurrance or new primary cancer. It doesn’t eliminate the risk altogether – I think it brings it down to 5%. I should probably know these stats shouldn’t I. The point is that I won’t need to have annual scans or find more suspect lumpy bits and have to go through the stress of getting them checked out.

 

…and that’s all I’ve got in terms of positive thinking. Here’s hoping things look brighter on the other side. I’ll let you know.


Junkie

So I had my last chemotherapy last Friday… and thank fuck for that! Got the picc line removed and seen the last of the cold cap too.

Here is the poison going in for the last time:

Last Time

…and a shot of me in the cold cap for the last time:

Cold Cap

…and my arm’s response to the picc being removed. I think it’s had enough of dressings now…

Gone

I can’t really say how I feel yet. Kind of tired to be honest. Still got this lot of side effects to get through and then onto bilateral mastectomy in 29 days so it’s a bit difficult to be all “WOOOOHOOOO!!” about it but obviously I am glad to see the back of chemotherapy. It has been more difficult that I care to admit. I think I’ve done ok though. I have taken some extra days off this week but including the three weeks I took for my operations last year, the IVF and all the chemotherapy I am still under 30 days sick from work total which I don’t think is too bad.

So yeah.. yay me. Chemo done. Just need to get past the last round of immediate side effects, my hair to grow, lose this additional stone in weight, dye my hair a less white colour, get boobs chopped off pumped up and swapped for permanent implants, grow some eyebrows, regain some fitness, recover from being anemic, get through the five years of hormone therapy and maybe life will be good again. I’d settle for just “ok” at this point to be honest.

Anyway… what I thought I would talk about today is all the drugs I have been taking this last five months. For years and years I have taken nothing more than over the counter painkillers then suddenly I had to become a junkie. They pumped the poison in and to counteract the effects I injected myself and popped pills like it was going out of fashion. So here is a run down of the main drugs I have been / am still taking throughout the chemotherapy extravaganza:

My first drug was the Zoladex:

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This is the injection I have every 28 days which shuts down my ovaries and puts me in a chemical menopause. It’s not nice at all. Let me just confirm that hot flushes are very debilitating when they stop you sleeping and being in a chemical menopause doesn’t do a lot for your intimate relationships. In fact it kills that whole side of life stone dead. I go to the GP to have this done and last one will be 7th May. I do then have to start taking Tamoxifen though which has a similar effect so we’ll see if the side effects are the same. I hope not.

No. 1 of the actual chemotherapy paraphernalia is Domperidone:

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This is an anti-sickness that seem to be handed out like sweeties. Had these on FEC but have told them not to bother for Taxotere as I didn’t feel sick on that anyway. These did absolutely nothing for me on FEC either. I puked copiously for the first two sessions and these didn’t seem to make a blind bit of difference.

Alongside the Domperidone was Ondansetron – another anti-sickness:

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Again… not particularly effective and cause constipation which was an added feature. They have continued to give them to me on Taxotere but I have not taken any as no sickness. Shame as it is wasteful but they would not let me leave without them so I will just have to hand them into the chemist now.

A lot of people get on just fine with the above two anti-sickness medications but I had to break out the big guns to stop the puking… the Emend:

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THANK CHRIST for this stuff. Still massively nauseas on FEC but no actual puking. There are three tablets – you take the first one about an hour before chemo and the one each morning for the next two days. I only got this on my third and fourth FEC which pissed the chemo nurses off. They wanted me to have it after the first one. I was prescribed it on Taxotere too but I did not need it so again I have two tablets in the packet in the picture which I could have done with on the first two FEC really!!

Next up is probably my least favourite drug of them all – the evil Dexamethasone:

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Steroids.

Horrible horrible misery inducing steroids. Had these for both FEC and Taxotere and just for a treat the dosage is increased on Tax to counteract any kind of allergic reaction. These have had an awful effect on my state of mind and I also think they make the flushes worse. They definitely stop me sleeping. I am so glad to see the back of these – never want to take another steroid again.

Onto the injections – Lenograstim:

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I start these four days after chemotherapy and have five to do in total. I have four more to do this cycle and then no more – hurrah! I do the injections myself as after the IVF I’m a bit of a dab hand at jabbing myself and I didn’t want to wait in for the District Nurse for five days every week after chemo. No thanks. You can see in the pictures that there is a syringe and a vial of powder stuff. You have to mix the two together with the BIG needle (yellow pack), swap to the smaller needle (brown pack) and then stab yourself in the stomach / leg. I always do it in my stomach. It’s not that bad but the more I have had to do the sicker of it I become. This cause bone aches which is a bit annoying on Taxotere as that causes bone aches too – so double whammy. I manage it ok with paracetamol and ibuprofen though. I know some people who have had to have morphine to control the pain so I’m not going to complain too much!

One of my least favourite side effects on Taxotere has been the rancid oral thrush. It’s very difficult to explain how depressing this is if you have not experienced it – but take my word for it that everything tasting of shit and your mouth hurting is not much fun. I have been prescribed two things from the GP which to be honest, have not helped all that much but I’m still taking them for this round (plus salt mouth wash, oraldene, pineapple and live yogurt. I’m trying everything to no avail). The two things the GP has given me are Nystatin and Fluconazole:

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The funny thing is that Registrars have not given a shit about my rancid mouth for the first three Taxotere but on the last one there was much concern and now I have Fluconazole coming out of my ears. Oh well… at least it helps a little bit and I won’t run out this time!

Last but not least is the Omeprazole:

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This is for indigestion. I had terrible indigestion on FEC and this stuff is absolutely awesome. Honestly, you really appreciate it when drugs work on chemotherapy as half the time they give you stuff and it doesn’t make a lot of difference. This was a revelation and I love it. My indigestion has had a bit of a resurgence on this last round of Taxotere so I’m glad the GP gave me a ton of this stuff on FEC and I have some left over.

Oh no… sorry, not last. I have a couple more prescribed things but no pictures:

Temazepam – sleeping pills. I’ve really tried to avoid taking these so have only had three. I will admit to being a total sominax junkie though. Need to get a handle on that really.

The GP did also prescribe me a mouth wash called Difflam that I know a lot of people find really helpful but randomly it just made my mouth hurt more. Clearly I was just doomed to have a manky mouth.

On FEC I needed constipation relief but that was just over the counter Senna tablets although I’m sure you could get better stuff from the GP. The other over the counter stuff I could not have done without is just the painkillers for the Taxotere bone aches. These have just kicked in today for the last time actually so I am about to pop some pills.

I think that is about it though. Drugs on top of more drugs!! I am looking forward to not pumping my body full of this stuff. This is the thing about chemotherapy – you feel fine before you have it and by the end you are a wreck of yourself full of all manner of crap. It’s difficult to feel that it is doing you good. Lets hope it did though…


AWOL

Oh dear, I’ve not been a very good blogger recently have I!

My excuse is Taxotere – it is a right bitch. For those of you that have not read my earlier chemotherapy related posts, Taxotere is the second type of chemotherapy  drug regime I am having. I started with four rounds of FEC every  three weeks (See my FEC Off post for details) and am now having four rounds of Taxotere.

 

I should have had my third dose on 5th April but it got postponed and I actually had it yesterday on 8th April. As I have been AWOL I thought I had better post a bit of an update on why and how I’ve been getting on since my last highly depressing post.

 

Where to start… I guess with a chemotherapy side effect update. Tax is certainly different to FEC – much more physically hardcore but still loving the no puking. Side effects of note are:

  • Bone aches (like when you have flu) – these kick in on around day 3 and last a few days. I’m ok controlling them with ibuprofen and paracetamol and have not been bedridden like I have heard other people say. Not nice but tolerable.
  • Oral thrush. This is horrific and makes everything taste like absolute shite for about 14 days. I did have an oral drug called Nystatin from the GP but it doesn’t have much impact so today he prescribed me another tablet form drug called Fluconazole. I have also got Oraldine mouthwash, some probiotic drinks and some Manuka honey to take. I’m hoping the four pronged attack will help in some way as I can’t tell you how depressing the mouth mank is!
  • Weak limbs and breathlessness. Oncologist says I have low haemoglobin levels and this why my fitness is utterly buggered. I get overtaken by grannies when walking these days – not good. I can only describe it as the feeling when you actually have just done lots of exercise and get wobbly legs / arms and feel all funny. That’s me after about 200 yards.
  • Swollen legs, arms & ankles. Attractive!
  • Burn like skin reaction on my hands and feet. Ouchy.
  • Nose bleeds and bloody crusty snot that is sore. Attractive again!
  • Sore and tingly fintertips – apparently this is called neuropathy. Mine only lasts for the first week or so which is good as I think it can be an ongoing problem for some people. Makes doing my bone marrow boosting injections a bit fiddly though!
  • Nails have gone a bit funny but are still hanging on – I’m told they are likely to fall off at some point but we will see.
  • Eyelashes have now fallen out and eyebrows are doing their best to follow. I just keep getting more and more attractive.
  • Obviously my hair is still falling out and I have a very large bald patch all over the top of my head. The good news is some of the hair has started to grow back. The bad news is that following the not very attractive theme it appears to be mostly white and I’m not supposed to dye it for six months.
  • The increased dose in steroids is causing an amplified steroid rage / downer situation which is horrible. Just have to try to muddle through those feelings without shooting myself until they go away.
  • Steroids also make me want to eat but oral thrush means I’m a bit limited in what I want. Well, I don’t really ‘want’ anything but just keep trying stuff to see if it will taste ok. It never does but this does mean I’ve gained about a stone in weight. Marvellous.
  • Steroids also mean a distinct lack of sleep. I really do hate steroids!!
  • Hot flushes after chemo – quite intense for a few days but then much better than they were on FEC. This could also be related to when I have my zoladex injections. I had chemo yesterday and zoladex today – had a terrible sweaty night but I’m not sure if that is because I was due the zoladex or just had the chemo. Probably both.

So thats about it. Fun times…

I think the worst bits are the oral thrush and the weakness in my limbs. I did have days of feeling ‘normal’ on FEC but I don’t on tax – possibly this is also just due to the cumulative effects of being in my fifth month of chemotherapy. I am still working though – although I have taken the day off sick today. I am finding being around most people increasingly difficult though. It is just difficult seeing other people all happy and carefree… oh and two more people are pregnant. My sister in law and the girl who sits behind me at work. Great for them obviously – but another reminder that our baby hopes are minimal to say the least.

 

On a positive note I now have only one more round of Taxotere and then I am fully poisoned. This also means I will have my PICC line removed soon – HURRAH!!!! As my last dose was postponed I don’t know if my next lot will be 26th April as originally planned. My blood test will be three days early so may come back as not good enough results to go ahead on that day in which case I will be postponed to 29th April. I just really hope bloods are ok by then – I don’t want to be extending this shit into May.

 

In other news I have my psychologist appointment tomorrow where I have to convince them I am of sound mind to be requesting bilateral mastectomy (as one side will be risk reducing). I have had a bit of a ‘good boob scare’ since my last post as I found a suspect lumpy bit and had to go for a scan to check it out. Thankfully it turned out to be fine but did kind of confirm the fact that keeping the ‘good’ boob is just going to cause increased stress and worry. Hopefully the appointment tomorrow will be ok – my surgeon and the geneticist I saw both agree that bilateral is the way to go so unless I do or say something really stupid it should be ok.

 

During my ‘have I got cancer in the other boob too’ episode I also had a horrible appointment with an Oncology registrar. At my sixth pre-chemo appointment I saw a registrar who was just rubbish. Wasn’t prepared at all and didn’t seem to know my situation. He proceeded to tell me that at my 7th appointment we would discuss my radiotherapy schedule. News to me as Dr Charlton (my actual onc) had said as things stand I would not be having radiotherapy. He was wrong – I knew he was wrong. He didn’t even know that I was having more surgery. Once I said that he backtracked and said “oh no, I meant after surgery” which was obviously rubbish. Then my least favourite Breast Care Nurse arrived so he could examine my new lump and tried to say I had misunderstood re the radiotherapy. It was just a horrible appointment and made me feel really unsure about everything. So that plus the lump worry sent me into a bit of a downer to say the least!

 

On that note – I have also now seen a geneticist and had blood taken to test for the brca genes. It was quite a depressing appointment – she said she would put money on my having a brca gene mutation. Great. I should get the results in about five weeks. I so hope she is wrong.

 

I have my next appointment with the plastic surgeon on 16th April and I am hoping to get at least a good idea of my surgery date then. I have had to go to an appointment with a Breast Care Nurse a couple of weeks ago where I had to look at pictures and listen to her talk about stuff I’ve learnt from the internet. Tbh it was a bit of a waste of time but it’s done now. She said she thought my surgery would be 3 to 4 weeks after I finish chemotherapy – so not much time to start feeling better! I guess it depends on surgeons diary though – and I’d rather get it out of the way sooner rather than later.

 

So yeah – I have just been a bit caught up in the whole cancer merry-go-round for the last month. They seem to have decided to wait until I look and feel my absolute worst to have all these genetic / psychologist / surgery appointments and it’s all just a bit full on, on top of my total lack of energy and various ailments. I have not been eating well at all so I have no food updates. I did make soup this last weekend with kale and quinoa and all that good stuff – using up some veg box items from the box we forgot to cancel. Have decided to aim for a soup diet for this round of rancid mouth. I can’t taste anything anyway and it might help me lose a bit of weight!

 

We did go away for a couple of days a few weeks ago and went to London Zoo and Chessington World of Adventure. We had special tickets to view London Zoo’s new tiger exhibit before it opened to the public. I was really pleased with how my stamina held out on both days and it was fun. We only stayed for four ish hours on each day and I think that is what caused the leg / ankle swelling and I was utterly fucked by Saturday but I’m really glad we went! I did take my camera and will post some pictures soon. We did mainly zooing at Chessington as we went on my worst bone ache days so I wasn’t much for rides. We did go on a couple of rides too though. I just took lots and lots of painkillers!! It was a shame that the tiger exhibit opening didn’t fall on the following week when I would have felt a bit better but we still had a good time and it took my mind off things a bit.

The new tiger exhibit is great btw – and the two new young tigers are beautiful :o)

 

So that’s what has been going on in my life the last month or so. I’m resting today and then this lot of side effects will kick in. I’m annoyed because my worst days will now be next saturday and sunday rather than thursday and friday. It is my neices birthday party (just family) on saturday though so I will be at least sitting in a corner with my party hat on. Fingers crossed these new drugs work and I can have some cake and actually taste it! Right, I’m off to take some more evil steroids… I will hopefully be posting a non-cancer related post soon.

 

 


Waiting.

I’ve started this blog post quite a few times and then given up as it’s all a bit too traumatic.

Yep – it’s the one about fertility and kids and fucking cancer potentially ruining everything.  The main crux of it all is:

– M and I would like to have kids
– Chemotherapy will potentially make me infertile

…but that is not all.

Oh no, it’s not nearly that simple. There are also other things to consider like the fact I may carry a gene mutation for breast cancer which I could pass on. Or that my cancer is ER+ meaning that oestrogen feeds it. Pregnancy raises your oestrogen levels somewhat. Or that I am supposed to take hormone therapy after all my chemo / surgery is done – for five years. You can’t have kids while on hormone therapy.

When I was first diagnosed with DCIS (non invasive cancer) I was happy that chemotherapy would not be on the cards but consumed by the fact it could be genetic and what that would mean for having kids. I have a huge moral dilemma about whether it would be wrong to even try given the fact I appear to be a genetic disaster. Then I got upgraded to invasive cancer at it all just seemed completely hopeless. I’ll be honest – it is the thing that upsets me the most… apart from the possibility of dying obviously. The thought of dying is quite abstract though. The thought of not having kids is very tangible and just makes me feel like I have no future – even if I manage not to die.

It’s not just me either is it? This is also potentially ruining M’s chances of being a dad. Couldn’t feel more guilty about that.

Now I am four months on from my diagnosis of invasive cancer I go through stages of feeling utterly hopeless about this subject or actually quite hopeful. There is no in between.

I think I’ve covered the negatives but on the hopeful side we have the fact we did IVF treatment between my second surgery and starting chemo. We ended up with three embryos on ice. I am very happy we did the IVF but only getting three embryos was very disappointing for me. Again felt like a huge failure when I read about all these other women who end up with ten embryos and there we are with three. Oh well, three is better than none. IVF not only means a back up plan either. There is such a thing as pre-implantation genetic testing – where embryos can be tested for crap genes. This is part of the reason I was so disappointed by only three embryos – doesn’t give much scope for finding a ‘good one’ if we need to go down this route. The main point though is at least we have an option if I do end up mangled AND barren.

There is also the fact that my oncologist says there is the option to come off of / have a break from tamoxifen (the hormone treatment) after two years to try for a baby. Not that he’d advise it obviously – he’d definitely prefer me to stay on it for the recommended five years but then I would be 39 minimum before we could even start to try.

We also have the fact that even if I do have a known wonky gene (still waiting to hear from genetic clinic about testing) the chance of passing it on would be 50/50 – and even if I do pass something on that is not to say it would certainly lead to cancer. It is not a done deal. I also feel like my life is worthwhile even though I have cancer – and who knows how much treatment will have come on in 25+ years.

Zoladex is next on the list. I have a love / hate relationship with zoladex. I am having a monthly injections of this to try to help preserve my fertility. The idea is that it shuts down your ovaries and so protects them from the chemotherapy. Whether it really adds any benefit is not completely clear but I asked for it and my oncologist was happy for me to have it. I feel like I have to do everything I can to try – even if it only adds a couple of % improved chances. It has horrible side effects though because basically it puts you in a chemical menopause. Just what you need alongside chemotherapy.

Finally – because of my age, my oncologist seems to think there will be a good chance I will retain my fertility, albeit maybe for a shorter period of time than would be normal. No one can say for definite obviously – but I think being under 35 is considered quite hopeful though.

So there you have it – basically a load of uncertainty and shit decisions to make – but there is some hope. Best case scenario:

– I don’t carry any of the known genes. This doesn’t mean my cancer is not genetic, it still could be but the gene itself is unknown. The way I see it though is that I can only go on what is known. Carrying a BRCA gene mutation can mean up to 90% increased chance of developing breast cancer. Carrying an unknown gene means an unknown risk – I feel I would have to discount this as an issue if that is the case.
– I come of tamoxifen after two years and periods / ovulation return to some semblance of normality.
– We get to try naturally and succeed. There is much joy.
– Doing this does not cause recurrence or new primary cancer – or any kind of secondary spread. I don’t die. There is even more joy.
– I go back on tamoxifen, complete the course and we all live happily ever after.

I like this scenario. I like it a lot – even if it involves some difficult decisions and risk. I have to hope this is what is going to happen because the other options are frankly crap.

I know we are lucky to have our back up embryos but frankly, I don’t want to have to use them. For the record I do not wish to consider donor eggs or adoption either at this point. It is interesting how people think these are comforting suggestions. They are not.

Sometimes when I run all of the above through in my brain (which I do pretty much 90% of the time) I just end up thinking ‘who am I kidding?’

Other times I feel quite hopeful and think ‘No, fuck you cancer, not going to ruin the rest of my life’. Problem is, even when I feel like this there is nothing I can do but wait. Wait to finish chemo. Wait to finish surgery. Wait to even start taking tamoxifen let alone wait for two years to come off it again. Wait for tamoxifen to get out of my system once I stop taking it. Wait to see if fertility returns. Wait to see if we have been successful if we can try naturally.

That is an awful lot of waiting.

I hate cancer.


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