Tag Archives: 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…

 

 

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Wish

So here we are on New Years Day 2014.

I have been very neglectful of this blog in the latter part of 2013. I’m not sure why really as it was helping me through what has been a somewhat tough year. I suppose after I went back to work in August after the mastectomy operation I wanted to just try to get on with things. I didn’t have too many cancer related appointments for a couple of months and I was just trying to get to grips with life again. Long story short – I’ve found this pretty tough. Looking back at my posts I can see how I was trying to get away from the cancer related stuff but it is just omnipresent in my life now. Then in the last month or so, things have degenerated rapidly. Since my last post my poor poor sister (who is the aforementioned close relative who also has breast cancer – I don’t think there is any point trying to mask the identity any longer) has received the news that her cancer has also spread to her brain. She found this out a week after my foob swap operation, having had a funny turn and crashed her car on the way to her pre-chemo (due to cancer spreading to her liver) blood test appointment. You couldn’t make it up could you.

She went downhill in a scarily fast fashion and spent a week in hospital being pumped full of steroids and anti-seizure medication. I visited her in the hospital. It was awful seeing my usually vibrant, happy big sister so obviously unwell. That’s probably the biggest understatement I’ve ever made. It ripped my heart out, threw it on the floor and stamped on it. It wasn’t just seeing her so unwell – she has improved a lot since that day as I knew she would given the right drugs – it was knowing that at some point she is going to go past that point and not come back… and there is nothing I can do but watch. Again.

I’ve done this before with my dad – I know how it ends.

She will be having targetted brain radiotherapy starting tomorrow. Happy new year sis. Yes, that was sarcasm.

Obviously we all hope the radiotherapy and chemotherapy work as well as they can – but the uncertainty of it all – well, I have been finding it a touch crippling. My brain is really struggling to come terms with the whole situation and I veer from “she’s not dead yet” weird optimism, to absolute terror that the same will happen to me, to general fury… and then there is the empty, numb feeling that is I think my brain deciding to opt out of life altogether as that is the easiest option.

This sounds incredibly trite and unimportant – but it’s got to the point where I can’t plan anything either to try to lift myself out of the empty numbness. She asked me the other day if we still plan to go to Florida in 2014. How do you answer that when what you’re actually thinking is “No – because there is no chance we will get insurance to cover the fact I have cancer and you have stage 4 cancer and are quite likely to die this year”. Going by the last 3 years, whenever we try to do something nice someone either gets diagnosed with cancer or dies, so it is clearly tempting fate to spend about £6000 on a holiday of a lifetime without insuring it. I know that shouldn’t be important – but realistically it is and I am just SO fucked off with cancer intruding on everything like it does. Maybe it is just me, but we have booked a couple of nice things to do in the next few months (Mark got me tickets to Matilda and Country to Country for christmas and I’ve got mum and Mark Derren Brown tickets too) and it is really difficult to actually commit to anything and just look forward to it. Always have that horrible ‘tempting fate’ feeling that makes me just want to not bother.

You can’t live like that though – and I also have this guilty conflicted “I’m not the one that is dying” (See – tempting fate again. Probably shouldn’t say things like that) feeling that means if anything, I should be seizing the moment, appreciating what I have got and throwing caution to the wind. Not sure I’m explaining myself very well here – but suffice to say I have a lot of confusion about it all.

I just wish I could do something to help her. Failing that – I wish for an end to any pain and suffering she is, or is destined to experience. Whether that is by the treatment working, or the unthinkable happening. I wish for the process to be the least painful it can be. I think I will stop talking about it now as I’d quite like today to be a good day with Mark and not end with me in a pit of despair. If I think about things too much that is exactly where I will end up.

SO – onto other topics. Christmas day was actually lovely. We all made it out for Christmas Lunch and it was just a good, relaxed day. I laughed lots and managed not to cry at all! I have been back at work this week after my foob swap op and am taking on a new role as one of my best friends at work is leaving. I am quite sad to see him go – and I’m actually quite intimidated by taking over his role. I will also have to cover my old role for the next month or so too. I’m not sure what made me think I needed another challenge in life tbh but I guess this is an example of my actually throwing caution to the wind and saying “why not?!” when perhaps “No” would have been the more sensible answer. So you can now call me a ‘Operational Planning Manager’ and I can start a new program of ‘fake it till you make it’. Wish me luck!!

In terms of 2014 – I basically ignored New Years Eve as much as possible and I’ve never been one for resolutions. I think I have a pretty good handle on what is important and what isn’t now. I’d like to lose weight and eat better – but that’s not really a resolution. Once Smithers says I am allowed to exercise again it should just happen naturally. One thing I have semi-committed to is a Photographer of the Year competition on the photography forum I frequent. I would like to get my creativity back and start caring about something that has nothing to do with health or my family – and photography is the obvious choice. I will write a seperate post about it but the competition is basically 12 monthly pictures to a specified them and/or style. Last year stupid cancer / chemo / surgery got in the way of my planned photography project so I’m hoping one photo a month is more than doable this year. Again… wish me luck!

So I think instead of resolutions and “things can only get better”, I am just starting 2014 with a few wishes…


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:

DSC_0680

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:

DSC_0681

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:

DSC_0678

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:

DSC_0682

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:

DSC_0683

DSC_0685

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:

DSC_0684

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…


Brain Freeze

I know I said I would post a non cancer related post soon – but to be honest it’s a bit tricky to think about anything else at the moment. I could talk about how hopefully this friday will be my last chemotherapy after five long months. Or that I successfully convinced the psychologist that I am of sound mind so bilateral mastectomy here I come… in 35 days time. Not sure I want to dwell on that though – and I realised I’ve never really talked about the cold cap and hair loss so that’s going to be todays subject.

I think everyone probably knows that having chemotherapy for breast cancer causes hair loss (incidentally, it also causes weight gain which is a real bonus – fat AND bald is every womans idea of a good look obviously) but the idea of the cold cap or ‘scalp cooling’ is to prevent or at least minimise this. The below explanation of how it works is lifted directly from the website of the model of cold cap my ward uses – the Paxman: http://www.paxman-coolers.co.uk

“Cancer chemotherapy affects rapidly dividing cells and at any given time, 90% of human hair follicles are in the actively dividing phase. Hair loss frequently occurs due to partial or total atrophy of the hair root bulb, causing constriction of the hair shaft, which then breaks off easily. Scalp cooling works by lowering the temperature of the head and scalp immediately before, after and during the administration of chemotherapy. This in turn reduces the blood flow to the hair follicles, thus preventing or minimising the damage, meaning that hair loss is not inevitable.”

Depending on the type of chemotherapy drugs you are having (and they do vary quite a lot depending on your personal diagnosis – something I had not really appreciated fully before this whole cancer experience) you have to wear the cap for a certain amount of time before / after the actual drugs are administered. For instance for my FEC treatment I had it on for half an hour before, the hour or so to administer the drugs, and two hours afterwards. It therefore significantly increases the time you are in ‘the chair’. For taxotere it is not so bad – only 45 minutes after the treatment. I have on one occasion been sent away from the ward because all the cold caps were in use and they would not be able to fit me in due to the time it takes. That was quite annoying but I was only delayed over the weekend from friday to monday. It was due to my Onc being an hour late in clinic and the fact I had a late appt to start with. On all other occasions I (and the other cold cappers) have jumped the queue on the ward. There are only three cold cap seats so if one is available we tend to take it even if other people have arrived before us.

It cools your scalp to -4 degrees C – which I can confirm is brain freeze territory. I’m not going to lie and say it’s fine. It was to begin with when I had lots of hair – but it has got progressively more difficult to deal with as more and more of my hair has fallen out. I always take a paracetamol half an hour before putting it on to try to ward off headaches which has been pretty successful. I would now class it as painful for the first 15 minutes but after that it is just uncomfortable. Part of that is the fact it is strapped on so tight under your chin. I have two blankets while wearing it – and the last couple of times my lips have still gone blue with the cold. I try to have hot drinks too – but not too many as I prefer not to disconnect the cap to run to the loo. I find the pictures on the Paxman site quite funny – no one on my ward has ever looked that cheerful while wearing the cold cap!!

I have the small purple inner bit and have had to go down a size in neoprene cover as my hair has departed. Before they put it on the nurses wet my hair and put some conditioner on it. This is mainly to help with taking it off again as you do end up with ice sticking the hat to your hair. The main problem I had with the conditioner though was that I was so sick on FEC that I associated the smell of it (and the plasticy smell of the cap itself) with vomiting. So just putting the damn thing on made me heave. Bleugh!! When I moved to the non-vomity drug Tax I had to waft Vicks vaporub under my nose while wearing the cap to break the association. Thankfully it worked!

The cap varies in success from person to person – I think it is to do with how well it fits your head. I have done well with the hair on the back of my head but not on top. I suppose before I show you pictures of my hair now, I should show you what it looked like before. This is me in 2011 at the airport before our awesome trip to Florida:

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I had really thick hair before chemo – in fact I used to curse it and say that the final laugh my hair would have would be to all fall out. Turns out that wasn’t far from the truth. Ha fucking ha.

Anyway – these are not the best or most regular pictures but do give you an idea of how the cold cap has fared for me. I have focused on the top as that’s where my worse baldness was – the back has done well, thinned but no massive bald areas! I started chemotherapy on 30th November 2012 and had my hair cut into a chin length bob style before starting. To try to minimise the hair loss I have used only a very wide tooth comb, washed it only about once a week with Simple brand shampoo and used a silk pillowcase from about halfway through. I think the pillowcase made a difference – wish I’d used it from the start.

08/01/2013 – you can’t see on account of the hairband, but I am wearing the hairband because the baldness had started:

08.01.13

06/03/2013:

06.03.13

25.03.2013:

25.03.13

03/04.2013:

03.04.13

10/04/2013:

19.03.13

24.04.2013:

24.04.13

So as you can see – cold cap not exactly a win for me! It started shedding on about day 16 after my first FEC and an absolute ton fell out for the next month or so. That was horrible – bloody hair everywhere and great clumps came out everytime I touched it. You should have seen my pillow in the mornings, literally covered in hair. I can’t tell you how stressful it is dealing with this. It is also painful – as in your scalp hurts – which is something no one really warned me about. It has continued to shed to a lesser extent throughout and has really slowed down on tax – although at that point my eyelashes buggered off and brows seem determined to follow.

I have been able to cover the baldness to some extent by wearing wide headbands. This is me 19.03.2013 sporting the wide headband look:

19.03.13 hairband

… but I have also spent plenty of time crying about how awful it looks and how difficult it is to try to cover it. It’s not just the top that went bald, all around the edges of my face, ears and nape of my neck did too – basically anywhere the cap obviously didn’t cover or fit. I have been pretty happy that the weather has been so cold as I have been able to wear hats without looking too odd. Everyday I have worn a hat to work and then spent ages in the disabled loo trying to fashion a headband to cover the baldness as best I can – it is not a very cheerful way to start the day!! The headband also give me a headache – I really don’t like wearing them at all and can’t wait till I can burn the lot!

I am having 8 chemotherapy sessions in total and my hair started to grow back between sessions 6 and 7. Unfortunately it has chosen to grow back white so it is now looking worse than ever! My mum (bless her) has got me some special shampoo and conditioner called “Fast” which is supposed to make your hair grow faster – I am going to start using it after my last session. You’re not supposed to dye your hair for 6 months after chemo but I think I will be flouting that rule. I can’t walk around with a big white patch on top of my head… I’m going to look like enough of a freak after surgery as it is.

I am glad I have used the cold cap. I know other people have had much better results than I have but I have seen how quickly the hair seems to fill in once chemo is over for other people too – I’m hoping that will be true for me too. It has been stressful and I know some ladies find shaving their head quite liberating and makes them feel like they are in control – but I really didn’t want to lose all my hair. I have tried to keep my diagnosis private at work (although I’m sure everyone knows now) and going completely bald and having to wear scarves etc would have been a bit of a giveaway. I never wanted to wear a wig – I did try some on before chemo but they looked awful and were very uncomfortable so I never really considered it an option.

I think it is a very personal decision as to whether you want to try the cold cap, shave it all off, wear a wig or opt for scarves and hats. None of them are things any woman ‘wants’ to do but for me I think losing all my hair would have been worse than the stress of using the cold cap. I could be wrong but as I’ve used the thing this long I’m damn sure I’m using it for the last session!!


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