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Diary of a mastectomy

22 REPLIES 22
Nextstep
Member

Re: Diary of a mastectomy

Week 8

Got my new boob! I was expecting a BCN but the lady who does the fitting explained that she isn’t medically trained, although obviously very experienced. She was very kind, understanding and went through things at a relaxed pace – I never felt I was being rushed into a decision nor did I find it embarrassing in any way. I hadn’t realised how many types of prosthesis there were either! We tried quite a few and eventually decided on one we were both happy with, which we tried in a few different bras I had taken – two mastectomy bras and one old one. She gave me a form to take with any bras I wanted pocketing to the Nicola Jane shop so they would be done free of charge.

She also said I may be a 34D rather than a 36B. When things have settled down I think I’ll go to the Nicola Jane shop and try some different sizes.

I was going to donate all my old bras to Oxfam but I kept them in case there were any I could still use once I had my proper prosthesis. At some point I need to do the trying on exercise.
Nextstep
Member

Re: Diary of a mastectomy

Week 7

Received a copy of the occupational health report which said I would qualify under the disability provisions of the Equality Act. That took me aback. I am not sure I want to be thought of as disabled, but I suppose if it helps me to keep my job I shouldn’t complain!

Minor panic when 10 year old walked in to chat to me whilst I was in the shower because I hadn’t locked the door, which I had been doing since the op. No-one except me and the medical team have seen my scar yet and because I wasn’t expecting it I probably overreacted and turned away and asked him to talk to me when I was out. I should have just not made anything of it but I think I was worried about upsetting him just before he left for school. So that’s still a hurdle to overcome.

He was a great help though when I was trying on my mastectomy costume with shower puffs as padding as recommended on another thread. “Too big” “Too small” “Just right” – it was like a scene from Goldilocks!

I caught myself in Tesco’s deliberating whether to buy the ordinary or luxury shower puff and holding them out in front of me trying to decide which was the right size. There was a woman next to me who must have thought I was taking a long time trying to decide whether the luxury one was worth an extra 50p!

I was telling a colleague at work that I feel I haven’t got my “oomph” back yet. There could be all sorts of reasons – recovery from surgery, simply having got out of the work habit, the fact that I am not working full hours yet, the fact that I don’t feel “normal" yet or possibly the Tamoxifen. I just want to fast forward through this awkward phase to having my permanent prosthesis and being used to it and being able to work without that constant awareness of pressure – I know it’s going to be a different normal but I want to get to that stage. But why am I wishing my life away, haven’t I just been warned that every minute should be made the most of?
Nextstep
Member

Re: Diary of a mastectomy

I haven't been on for a few days but felt really touched to read your lovely kind and supportive comments, and I am so pleased if my diary is helpful to anyone else.
Week 6

Back to work! Everyone has been very kind and asking how I am. I had only told certain people what the problem was, most people just knew I was having an operation. That was mainly because I didn’t want people feeling awkward around me and wondering if I was going to die. I knew word would get round anyway so I have been open with people and emphasised that I am really lucky and have an excellent prognosis. The most difficult thing about going back is the message I give about what I can do. On the one hand I don’t want to overdo it and cause myself problems and therefore need people to understand that, but on the other hand I don’t want people to think I am now not able to give 100% and therefore put myself in the firing line next time there are redundancies.

My job is mainly office based and I can avoid strenuous lifting but I do find using the keyboard and mouse for long periods tiring and the discomfort around my scar increases as the day goes on. I was supposed to be doing half days this week but one of those turned out to be 8 – 3 and I was really feeling it at the end. But it is really hard to say I’m not going to finish that piece of work, especially when colleagues have been working extra hard and long covering for me.

On Friday I had a call from a doctor who deals with occupational health for the firm and she thought I was overdoing it and next week should just do 8 – 1 although we agreed I could do 8 – 2.30 if I feel up to it, and then increase by one hour per week so I will be back to full time by the end of the month which was my aim. I don’t think she realises my full time is 7 – 6 minimum! She is going to recommend a different “penguin” mouse which she thinks will help. I wonder if other people have struggled with a mere desk job, I feel a bit of a wimp.

I took the opportunity to ask her when I would be able to lift any weight again and she said there had been studies done which suggested lifting heavy items could lead to lymphoedema and that I shouldn’t lift anything heavy for two years!! When I was bringing in the supermarket shopping today I was thinking but how heavy is heavy?

Oddly I found flushing the toilet at work difficult! (push button type in the wall – I can’t push with any force). That was easily sorted by using my left hand but I found myself thinking again how much harder it must be for someone who has had a bilateral (I would have had to take a shoe off and use my big toe!). Also when one of the printer drawers stuck I was wary of giving it a good yank which I wouldn’t have thought twice about before.

Spent most of Friday morning at the hospital where I had been booked in to the wrong clinic. I thought I was going for the prosthetic fitting and they (and they were honest about this) really didn’t know why I was there. They did try to find a BCN to sort me out but no luck. They did however put me on the phone to agree an appointment time at the right clinic week after next.

So – different challenges at work, but it is good to be heading back to normal life.
pat_1949
Member

Re: Diary of a mastectomy

Good luck on going back to work today thank you for your diary. I am going for a MX and reduction of other breast on the 18th, so your diary has helped a lot Xxx
Melrose15
Member

Re: Diary of a mastectomy

Good Luck back at work xx
BlueRose
Member

Re: Diary of a mastectomy

Very interesting to read your story. I had my MX in December. I am now going through chemo.
Sainsburys do their own verdion of the genie bra - it is very soft and seam free, they have one with pads for £8 and one without for £5. In three colours. You can just about fit a softie into the padded one and they are very soft and comfortable.
I bought a lightweight prothesis from Nicola Jane - think it was their "comfy breast" I used this after my softie and sometimes use it now - it is lightweight but a bit more life-like than the softies and also has a small weight in it to stop it from riding up. I used this to swim with too and it was fine.
Good luck with the rest of your journey and thanks for your posts.
BlueRose. Xx
nanniereeree
Member

Re: Diary of a mastectomy

Thanks for keeping a blog it's nice to read someone else's journey xxx
Good luck on returning to work
Marie
angiepops
Member

Re: Diary of a mastectomy

hi
just to say good luck for monday, hope all goes well.
angie. xx
Guest user
Not applicable

Re: Diary of a mastectomy

Thanks for sharing your incredible journey, it gives others who are facing the same challenge a better idea of what to expect. I hope everything goes well with your return to work and normality.

Sending you big hugs

Karen xx

Nextstep
Member

Re: Diary of a mastectomy

Week 5 (can't believe it!)
Days 29 - 31

Took one son each day shopping – so much less stressful than both at once! Building up my confidence of being in crowds; when it gets busy I get nervous that someone is going to barge into me. Wore softie each time but off again when home! I am wearing the sloggi crop top all day now though – progress and (crossed fingers) I don’t think the nerve pain is as bad. Maybe it was listening when I told it to b***er off!

Funny thing happened this morning (not at the time but looking back!). When I went to get in the shower I noticed that all down my right hand side from the wound down was a strange red/purple colour. I thought I had some weird infection and then realised it was just where I had been leaning against the side of the settee and it was where my pyjamas had been touching – probably happens all the time and you never even notice it. Must not get paranoid!

Day 32

Oh dear – meltdown hit out of the blue. Thought I was coping so well but I think a combination of things, pain build up through day, problems with OH and then my son not eating his tea and me getting cross about it was the pathetic little straw that broke the camel’s back. So I sat on the bathroom floor and cried into the towel, hoping they wouldn’t hear, but my little boy knew by my face and gave me big hugs and said how sorry he was. I had to explain that it wasn’t his fault and that sometimes I would have bad days when things that wouldn’t normally bother me would be upsetting. We had lots of hugs and he read some of his book to me to cheer me up. I love him (and his brother) so much and I must be grateful for the treatment which means I will be here to see them grow up.

Day 33 and 34

Delivery of the things I bought online last week. I ordered a sports bra from M & S in medium and large. Optimistically opened the medium and laughed – definitely the large (I’m a 14). As I put it on over my head I reminded myself I probably wouldn’t have been able to do that a week or so ago. Had to put a hanky under the seam running under my arm but otherwise good and wore my softie for a good few hours. I felt quite positive about myself but realised I would have to keep an eye on the softie otherwise I would have a left boob and a middle boob but still no right boob!

The first time I came to take it off I really struggled and thought I would have to cut it off but perservered and got there by taking my good arm out and then over my head and then bad arm.

Day 35

Moved on to post surgery bra and managed to wear it all day although I was desperate to take it off after meal out in the evening – a thank you from me to a very supportive friend. Walked to doctors to pick up (as arranged!) “fit note” saying I can go back to work on Monday on phased basis. When I got there they told me I couldn’t pick it up until Monday as they can’t be post dated. Sounds bonkers to me but I enjoyed the walk in the sunshine and it blew the cobwebs away!. I seem to be free of the nerve pain now thank goodness.

Day 36

Back to hospital for check with surgeon. He and BCN very pleased with healing and my range of movement (felt quite proud of myself!). Can go swimming now – have ordered a costume and need to sort out a swimming boob, will probably wait until I have a costume and then go to the Nicola Jane shop. I asked the question my son had asked me about how many stitches I had in the op (I had promised my sons they could ask me anything and if I didn’t know I would find out – of course boys are interested in things like how many stitches!). I don’t know what I was expecting but I wasn’t expecting to hear the answer – hundreds! I asked him if he had done needlework at school!

Met colleague for lunch to find out what has been going on at work before I go back on Monday. Almost nervous about it!
Nextstep
Member

Re: Diary of a mastectomy

Sharon - I am confident you have the strength to get through whatever this trip throws at you - one step at a time. You never know how strong you are until you are tested. If you have raised three boys I am sure you have the strength of an ox! I am only two years older than you but my boys are still only 10 and 13 (late starter!) and they test my strength on a regular basis. You must have had your traumas with them over the years which were scary at the time but which you have come through and now look back on. One day you will be doing that with this.
If you feel wobbly post on the forum and someone will be along to give you a virtual hug, or reassure you that what your are experiencing is not out of the ordinary. Ranting and raving in a way you may not be able to do with friends and family is fine here.
I think everyone's first thought is whether they are going to die and that is perfectly natural. I don't know what results you have but bear in mind that a lot of the problems people post about are side effects of the treatment - and that is because there is such a huge range of treatments available now. I don't know if it helps but it helped me to think of my diagnosis as something positive - the start of beating the cancer; without the diagnosis I would have been happily ignorant but with a cancer growing inside me and spreading. As you get further down the line hopefully your medical team will be able to give you positive confirmations as to the success of each step. I felt so relieved when they told me they had removed the tumours and I am sure you will too - that is a big positive step. It's not easy but you can do it!
As to tips, apart from what I have put in the diary I would just say ask if you have concerns as your medical team will have so much experience which they can use to help you. Also take all the help you can get from family and friends. When is your op scheduled?
Lucy_BCC
Member

Re: Diary of a mastectomy

Posted on behalf of new user Sharon

you are one brave lady and i hope i can gain the strength that you have to go through my masectomy and come out the other side .I am 46 have 3 boys all grown and 3 beautiful grandaughters one is the inspiration in my life she is only 4. I have to get through this for her if noone else. I have a very understanding husband but am really frightened that i am going to die . any tips and you keep up the good work i admire your courage sharon

Nextstep
Member

Re: Diary of a mastectomy

Week 4 (for anyone who hasn't got bored to death yet!)
Day 22

I must be getting better as I am noticing all the jobs that need doing round the house! I have been working through old paperwork a bit at a time – must be good physio and makes me feel I am not just watching time go by. I think the fluid bulge under my arm is smaller?

Got very cross with OH for moaning about one child not liking onions as if that was really a big issue in the scheme of things. I have always been impatient with him for not just accepting that our children aren’t perfect and never will be and that many people would love to have two healthy, normal children, but, as I explained to him later, at the moment I just can’t cope with him bothering about things that are just not bl**dy important, and people in glass houses shouldn’t throw stones (ie he is far from perfect!). Got my punishment for being stroppy as I wacked my finger on a drawer. I fretted about that for a bit as I know you are supposed to be really careful to avoid injuries because of risk of lymphodoema and trying to break your finger is probably not good.

Day 23

Interesting purple finger this morning but it moves! Decided I should make more effort with bra and softie so put them on this morning and a top that pulls over my head. I couldn’t have done that a week ago so that is good progress. I am conscious of the bra and softie all the time, a bit like when you first start wearing a bra, and of course that feeling disappeared years ago so presumably at some point the time will come when a wearing a false boob won’t feel uncomfortable.

I had to take it off in the early evening as soooo uncomfortable. Fluid back under arm!

Day 24

Had to do quite a bit of driving today running the boys around. It is still quite sore when I drive, especially when I go over bumps – I seem to get more jiggle where I don’t have a boob than where I do! Found it helps to hold one arm across my chest (but not practical to do this when changing gear!).

Inspiration from reading other posts – will ring BCN tomorrow and discuss whether should have fluid drained.

Day 25

Lovely BCN said to pop in to see her whilst there to see oncologist but also to try a crop top rather than old bra. Go online and buy couple of crop tops in different sizes and a few other things whilst I was on there! When I see her she can see the problem but says she doesn’t want to drain unless absolutely necessary as any procedure carries a risk of infection and once you start draining you often have to keep doing it (sounds a bit like breast feeding!). I may be unlucky and have a suture under the skin at the point where the scar and bra side cross. Give the crop tops a try and BE PATIENT!

Oncologist confirmed no rads required – good job as one of the factors which led to me choosing mastectomy over lumpectomy was that I understood I then wouldn’t need rads. He said rads only needed if there is any indication of local reoccurrence – questions being lymph glands affected (no), vascular invasion (no), size of cancer (presumably ok) and margins (clear). He also said 90-95% chance no reoccurrence in my case and no-one gets an absolute guarantee. I know I have been so lucky; thank goodness I didn’t bury my head in the sand.

Day 26

Got stressed today as my work remote log in wouldn’t work and I spent most of the day on the phone to IT. I think when you get stressed you tense up and that makes pain worse.

My mum (bless her!) has lent me two Sloggi tops (size 18 – I am a 14!) and I have tried them on with the softie – think I could cope with those, especially as there is no seam/scar crossover. Never thought I would be wearing my mum’s underwear!

Also – secret confession – I shaved my armpit with a wet razor which I know is not allowed but I don’t have an electric razor and those creams remove my skin and leave the hair there. I was really careful and it wasn’t the smoothest finish but I feel better for it.

Day 27

Tried mum’s sloggi top with softie and was really pleased. I think because there was constant skin contact it seemed to put a stop to the “sensitivity” type pain which I got when anything even slightly touched my chest/side/arm/back. It began to get quite sore at the side near my arm but I put a tissue in to spread the “load” and that was better. I was a bit lobsided as my real breast has more gravitational pull (!) but I don’t think anyone else would have noticed. Wore it until late afternoon but was then getting too sore so took out softie. It seems I have to choose which pain I want, but a change is as good as a rest as they say!

Am working on my back to work plan – I am doing bits from home, and next week, whilst the boys are off school, I want to get out and about more to test physical strength and confidence and the week after I want to go back half days. Let’s see!

Day 28

BCN rang to see how I was doing with softie. Told her still having problems, especially if I wear it for some time. She thinks I have nerve pain and if it doesn’t improve soon they can prescribe some tablets for it. Don’t want more tablets, just want it to b***er off!
catzooo
Member

Re: Diary of a mastectomy

Hi Nextstep. I just found this thread. Very interesting and useful as I am having MX and ANC on Monday 25th. I have had chemo first tho, so have had since diagnosis last september to get used to this. I bought a MX bra, ready for the softee, my BCN told me I should wear it all the time after as compressing the wound is good.
Nanniereeree me too! How are you feeling? I am scared. Worried about pain and the big worry of Lymphodema. Hope you are making the most of the weekend - I am pigging out today on fave food. Will ease up tomorrow ready for Monday morning.
Nextstep
Member

Re: Diary of a mastectomy

Best of luck nanniereeree, I hope it all goes well for you. Keep yourself busy this weekend and make sure some of that time is spent on spoiling yourself, not just making sure all the jobs are done before you go in (I know what women are like!).
nanniereeree
Member

Re: Diary of a mastectomy

Very interesting diary for me as I am going for MX Mon 25th March
Nextstep
Member

Re: Diary of a mastectomy

Week 3
Day 15

Tried to be more positive but I think I am still frustrated at the lack of progress in that I still have the pains under my armpit, down my arm and across part of my back. Decided I needed to accomplish something so I could see an achievement so did the polishing. It took most of the day as I kept finding other jobs that needed doing as I went round the house but I think I did feel better for it.

I have been keeping in touch by text with my work colleague who came with me for my results. Her sister died from secondaries the week after (age 40) so she has had a lot to cope with. I didn’t realise her sister was so near the end (and to be fair neither did she) otherwise I wouldn’t have asked her. She told me from the beginning that her sister’s diagnosis had been very different to mine from the start. I remind myself that relatively speaking I am very lucky.

Tried a bra on with softie for the first time – I had been such a wuss as I thought it would really hurt but it didn’t although felt really weird.

Day 16

Out with son to a music festival with school. First outing with bra and softie! I did actually keep my coat on all morning so perhaps not a real test of how I feel with it. I am very conscious of it but I wonder whether it is distracting my nerves as the other pains don’t seem as bad today. I think it did me good to get out.

Strange when I took it off at the end of the day as it seemed to have displaced the fluid build up in the middle so I have an indentation now.

A friend from work came with her husband and we got a takeaway. She was very kind and keen to help and I was equally keen to show I could cope – I just carry a couple of plates at a time rather than six at once! She noticed I was getting tired and I was so keen to get to bed when they had gone I skipped my last set of exercises.

Day 17

Is it coincidence that I feel stiffer this morning or is it because I skipped that last set of exercises yesterday? I wore the softie all day; it causes a strange situation right through the middle of where my boob was. Not a bad pain, not an itch, kind of an inbetween feeling.

I’m concerned as to whether this feeling at the back of my arm (which seems to be spreading further down my arm) is the cording I have read about? I may need to read a bit more about that.

Suspect younger son may have tonsillitis – just a reminder that ordinary life carries on regardless. At least no deaths this weekend; we have lost three family members recently, one a week for the last three weeks. Two elderly ladies and that is the natural way of things, but one suddenly at only 49 which was a big shock. It just goes to show that we must appreciate what we do have because we never know when it may be taken away.

When I got ready for bed I realised why I had more stiffness – the indentation from wearing the softie had displaced the fluid but I hadn’t realised that it has seemingly pushed it up under my arm as the bulge there is now bigger than it was.

Day 18

Discarded the softie – back to braless. Feeling quite impatient now as I can’t see or feel much progress. Maybe I have hit a bit of a plateau.

Day 19

Sun is shining so I am going to walk to meet my parents for lunch at a local café I have always intended to visit and never had the time to. I have to find the positives in all this – like seeing my children get up and leave for school, I am usually at work before they get out of bed. I suspect most parents who have to deal with getting two boys up and out of the house every day wouldn’t see the attraction but I love it!

Day 20

Worrying pain today. It started when I yawned, a deep seated stabbing pain in the centre of my wound and then it came back when I bent down to pick something up with my good side. I will wait to see if still there tomorrow and if so call BCN.

Day 21

Mysterious pain seems to have done a bunk; it’s so easy to get anxious over nothing. I was imagining one of my stitches had burst or something. It’s strange how I sometimes look in the mirror expecting to see a physical difference as I feel different but it is still the same. In fact isn’t it about time this fluid disappeared? I have been thinking about the lack of progress – it’s probably like when you try to lose weight, there is no point weighing yourself every day and expecting to see a difference, so there is no point expecting to see progress every day. There will be fluctuations during the week – like today, I have less movement in my arm than I did yesterday, but it is better than a week ago so it’s all relative isn’t it? I just need to find the right point to compare with!

Before the op I was hoping (despite the surgeon saying six weeks) that I would be able to go back to work after four weeks, but that is only a week away and I just don’t think I’ll be ready. I have to be patient!

Just picked up a personal message from someone who said they found my diary helpful which was the whole purpose of it so made me feel better – at least I’m not just boring everyone!
Nextstep
Member

Re: Diary of a mastectomy

Here is week two! For those coming in later down the line week one was my first post.
Day 9

I have realised that I somehow lost a day out of my first week – Day 7 was actually day 8 but don’t ask me which day was missing!

I approached the new set of exercises with trepidation but was pleasantly surprised by how much reach I had when I gently pushed it. I am also trying to exercise as I carry out daily tasks, making sure I use my “bad arm” to reach to put away cups and glasses but carefully; that must be good for me.

Still very sensitive under my armpit and some soreness down the back of my arm.

Day 10

My sister in law took my son and I to a competition he was in and I was very much “in public”. Went for the cardy and scarf option and felt fine. Just very aware of kids running round (and adults not watching where they were going) so walking round with my arm in front of me like a barrier.

Day 11

The big day. First of all the results. Most important – clear sentinel node biopsy (I had readied myself for bad news on this so was ecstatic). There was the 33mm invasive grade 1 ductal they had done the biopsy on which was reconfirmed as ER and PR positive and HER2 negative and 50mm of DCIS which was probably a bit bigger than they had thought and they hadn’t previously been able to say whether or not that was cancerous. Also a surprise further 6mm grade 1 tubular which they still need test results on. So, no chemo unless that is HER2 positive. Have to go back next week to see oncologist to discuss whether I need radiotherapy but the hope is not. Tamoxifen for at least 5 years.

Surgeon asked if I felt tired and drained – actually I didn’t before I went in and now I was positively floating!

Was apprehensive about removal of the dressing, especially as I feared it would rip underarm hair out and underarm very sensitive. BCN was lovely as always and was really careful in that area but as it happened I couldn’t feel anything at all there.

I looked down at the wound which was more puckered than I expected but I think that’s partly still some fluid. Bruising really not bad as I generally bruise very easily. A bit surreal.

Surgeon felt my other lymph nodes as I said I was concerned they had been tender since the biopsy. He reassured me they were fine and it was probably just the biopsy (and in fact they are not as sensitive now as they were). He is so kind and patient.

Went to my son’s school for a mums and sons evening. I went on the bus – I should have thought to ask the driver to wait until I sat down before he set off as that pulled me about a bit. Got a taxi home and had to wait outside in very cold weather – big mistake. I hadn’t realised how much cold affects the damaged nerves. I was tensing up and shivering, which was not a good feeling and of course had lost the protection of the dressing. By the time I got home I did actually feel tired and drained and very tight and probably in the most pain since day one. Lesson learned – don’t be too cocky!

Day 12

Full shower and washed my own hair – bliss! Was able to see the wound fully in the mirror. There are a couple of bits where it doesn’t seem quite together but they must know what they are doing. I’ll keep a close eye on it. I don’t know what I expected but I am surprised by the length of it. I was supposed to ask the surgeon yesterday how many stitches so I could tell my son but forgot. I have told them I will answer all the questions they have if I can and if I can’t I will try to find out the answers - typical boy question!

Sensitivity definitely seems worse with the sore feeling extending from my armpit down the back of my arm and across part of my back. No problem when I am still but can feel every slight movement of my clothes across my skin. But I can live with it.

Doing my exercises and really pleased with progress. First Tamoxifen tablet tablet today.

BCN called to give me date of appointment with oncologist so I asked her about driving. Because they were happy with healing and relatively little bruising, I can drive when I want. Decide that is a task for tomorrow.


Day 13

Sun is shining and sky is blue but possibly snow this afternoon so decide to go for a walk and look round the shops. All those times I have looked out of the window at work and thought what a lovely day for a walk and I’m stuck in here – so now I have the opportunity, I have to take it.

I spotted two ladies walking their dogs and one of them was picking up litter and putting it into a carrier bag, so I stopped to say thank you for caring about the place we live in and to have a rant about those with no pride who throw all the rubbish in the first place. I try to focus on the ladies – I would never have known about their good deeds if I had been at work.

I drive the car to the end of the street and back and then round the estate. I hadn’t realised that it was easier sitting at the right hand side seatbeltwise – I had wrongly thought because the mastectomy was to the right it would be worse with the seatbelt coming from the right but it’s actually the other way round. Also, although up until now I had been thinking it was bad it being my right side as I am right handed in fact that’s better for driving as of course I change gear with my left hand. I decide to take my son to his after school sport but wake up from unintended sleep on the settee feeling absolutely knackered and am secretly relieved when he doesn’t want to go. Have I overdone it again?

Sensitivity (is it neuralgia?) is bad again and decide to take a couple of paracetamol to see if it takes the edge off it. Felt a bit sorry for myself – I want to be getting better faster, not going backwards – grrrrr. Give myself a mental kick up the backside and think of those going through chemo and rads and remind myself how lucky I am.

Day 14

A grumpy day – I am sure there will be more to get through but mustn’t let them become the norm.
poemsgalore
Member

Re: Diary of a mastectomy

About bra, didn't really have a choice. The nurse on duty was rather brusque and more or less dressed me like a naughty child. My son was waiting to take me home so I didn't argue. It came off quickly after I got home, and I've hardly worn it since, although I try to put it on with prosthesis when I go for chemo. My surgery was last December, so it's quite a while ago now - but I doubt I will forget it in a hurry. It just shows the difference between private and NHS.

Good luck with whatever treatment you go on to have next.
Big Hugs xxxx
Nextstep
Member

Re: Diary of a mastectomy

Poemsgalore - sorry to hear about you being messed about. It's the little things that make a big difference isn't it? We get stressed when we are not in control so not knowing when you are going down is bound to cause upset. It's bad enough having no control over the diagnosis but to not know what's happening when on the day of your op is really not on, and can't be good healthwise.
I have to say I think you are brave to have put your bra on so soon. I still have no inclination to put one on and I'm now at day 12! May need a bigger size by the time I get round to it as left one will have stretched due to gravity and expanded due to chocolate eating!
poemsgalore
Member

Re: Diary of a mastectomy

Sightly different to my experience in an NHS hospital. Arrived at ward for 7am. Sat around most of day wondering when op would take place. No food of course, but could drink water until mid-day, then nothing. Kept asking when they were taking me to theatre. 'Won't be long now, think you're next' I wasn't. Finally taken up, starving, and thirsty, about 3.30pm. Only took an hour, as I wasn't having a reconstruction. Down on ward by 5-ish. Family came to visit. Son fetched me a ham sandwich which I devoured. they bought me loads of fruit so at some of that too. Boy, did I enjoy my breakfast next morning, had a dinner too before being sent home that day with drain in, and bra on with softee.
I would have liked to have stayed in another day at least, had district nurse come and take drain out. Understand completely about drain falling or being dropped. Mine fell off the bed one night and bung came out, so I had to try and pump it up again!! Not easy in the dark while trying not to disturb OH.
I have to admit though, it wasn't too bad an experience. Had no pain, until a couple of days after when numbness wore off, and that was the drain site, not Mx scar. Would I have it done again if necessary. YES, ABSOLUTELY.

Poemsgalore xx
RevCat
Member

Re: Diary of a mastectomy

That's a lovely post, and I'm sure will help and encourage other people...
Jjust BUMPing it so it doesn't get missed. All best wishes for your continued recovery.
Nextstep
Member

Diary of a mastectomy

I had posted some questions due to worries I had arising from other people’s posts and someone (Revcat I think) explained that people tend to post more when they have problems so I decided to write this diary for anyone coming after me to show the good, the bad and the ugly as it happened to me in relation to a mastectomy with no reconstruction. Of course everyone is different but I hope it helps someone. Sorry for the length!
Day 1
Called in at the main hospital for my radioactive isotype injection.The lovely nurse told me it wouldn’t be as bad as the biopsy – she got that wrong! Maybe I was lucky with the biopsy and actually it wasn’t that bad; I just had to count to 10 three times rather than the once I was expecting. (Which isn’t bad when you think that in labour contractions went to 40 and then backwards to 1!).
Then up to the private hospital (thank you employer for private medical insurance) for the op. Everyone was so nice and kept talking to me until the last minute which was just what I needed. We had a debate about the virtues of onesies versus pyjamas. A bit of an ouch when they put the needle in the back of my hand and then I was saying I couldn’t feel it working yet, oh yes I think it might be now…..zzzzz.
I came round in recovery with another kind nurse willing to talk to me again. Sore throat due to the tube but no drink allowed yet. Heavy feeling in my arm but no real pain. Oxygen mask on. The nurse showed me how to use the morphine pump and I pressed it as instructed although I didn’t really feel the need for it (and my BCN told me later this was probably a bit OTT).
After a bit was wheeled to my room. I hadn’t realised how restricted I was going to be; I thought I would be able to go to the loo but with oxygen, a drip, a drain and my super blow up bootees (which inflate and deflate to stop DVT) there wasn’t a chance.
New skill learned – how to use a bedpan. Second time, over confident and overshot! Another nice nurse changed sheets with no fuss or bother. Also teeth brushing in bed!
I kept drifting off to sleep and then waking in a bit of a panic without knowing why – apparently this could have been the morphine, which is probably right as it gradually stopped. I didn’t have any more once in the room but had two paracetamols before going to sleep just in case.
Another newly learned skill – I facetimed my two boys on one of their i-pods which was great as I could see they were ok and they could see I was (I took oxygen off first!). It was better than a phone call because my voice sounded a lot worse than I felt.
Had a look at dressing – weird seeing no boob but I knew that was going to be the outcome so no surprise. Keep telling myself better that than an arm or leg.
Day 2
Slept pretty well. Had a throat lozenge for still sore throat which improved it no end and texted friend to bring mints and newspaper. Tip - take sweets with you to suck and baby wipes so you can freshen up whenever you want to.
Asked the nurse to look at my wound/dressing. I though it had sunk along the middle but then realised it was probably the other way round, it had swollen around the wound – she said it was fine.
Surgeon came to see me and said that the lump had been close to the chest wall and the skin where it was in the thin part of the breast so I had made a wise decision to go for the mastectomy rather than WLE - I actually felt quite pleased to hear that, as it would stop any wondering at a later stage as to whether I had made the right decision.
Came off the drip (and I had discarded the oxygen myself at some point) and took the bootees off –big step forward to get out of bed, go to the loo, have a really good wash and see myself in the mirror. I didn’t find it upsetting. Tip – don’t forget about the drain because when you drop the bag it yanks and bloody hurts!
Felt a big boost from feeling clean and fresh in my new pyjamas (gift from lovely friends at work). Had to keep surgical stockings on and kept getting up to walk round to ensure no DVT.
Friend came to visit followed by family later. The boys were clearly relieved to see me and helped to eat some chocolate (they take after me). They have been fantastic – I only ever got upset when I thought about telling them but they took it in their stride and then each asked what they wanted to know on a one to one basis. They both know cancer doesn’t mean death and my great (!) nephew has leukaemia which he been treated for during the last two years (diagnosed on his fifth birthday) so I was able to explain that mine wasn’t half as bad as his and if that little mite could cope then I certainly could.
Had two paracetamols before bed again (and mild laxative – don’t they take bowel movements, or lack of, seriously!). Was determined to watch Casualty (I know but was one of my favourite programmes until I found I never had time to watch much anymore with full time job and family). Fell asleep in the middle of it.
Day 3
The plan was for this to be departure date but I had to fit pick up in round boys’ sports (I really wanted them as much in their usual routine as possible). There were rumours of my drain coming out much to my delight but it wasn’t to be – my surgeon is very keen for drains to stay in until they have done their job.
Another lovely nurse helped me wash my hair with me standing and leaning my head back and her using the shower hose. Surgeon had said shallow baths only but we managed between us.
Another boost – clean hair, and own clothes, and then make up – all these little things make a difference!
Eventually went home about 5 although they said I could stay another night if I wanted to. Two nights was just right for me; I felt I had plenty of time to get my strength back but was able to be home with the boys on Sunday evening before school the next day.
They gave me a couple of softies to take with me but I have no intention of putting a bra on at the moment, I can’t see how that could be good for the wound.
They sent me home with paracetamol, a stronger painkiller and more laxatives (apparently the stronger painkillers can cause constipation). Had a bit a panic a few days later when I saw what was stapled to the bag – an invoice and a note explaining the take home medication wasn’t covered by insurance and I should tell them before I left the hospital if I didn’t want it! Fortunately the invoice was only for the stronger painkillers and was for…..£4! Cheaper than a prescription!
Put a pillow down the middle of the king size bed as I was worried about OH lying on drain. (During day was carrying it round in a little gift bag but then just put my belt through the handles – great, two hands!)
Day 4
Woke early and couldn’t get comfy so decided to read downstairs but fell back to sleep on settee. I don’t usually sleep flat on my back but didn’t have much choice. Stiff on first waking so it’s important to get moving.
Showered by pulling shower head down as far as possible and then showering from side making sure the dressing didn’t get wet. Having to hold the drain was a pain but I managed. Getting up and dressed a much slower process than usual just because you have to think about what you are doing rather than just going on auto pilot.
A scarf and a loose cardigan means I don’t look particularly odd. My view is that if people do have a problem with how I look that is their problem and not mine but I am conscious that the children should never be embarrassed by my appearance (by my actions yes, but not my appearance!!).
Had lots of deliveries of chocolates, fruit and flowers – I take strength from all the kind messages of support people have sent, each one makes me feel good and lucky to have such great people on “my team”.
I had been dealing with odd work e-mails since Day one on the Blackberry but needed to log on the computer to sort some things out. Was surprised how tiring it was to use the keyboard and mouse and told myself to listen to my body. Baby steps.
I went for a short walk in the afternoon. I was quite apprehensive although I couldn’t say why but once I was out with sunlight and fresh air on me I felt another physical boost. I kept consciously having to relax my shoulders as I was holding myself so stiffly.
Day 5
Pretty much like day 4 but had 2 paracetamols when I got up as had sinusitis type pain in my face. I suspect I had been clenching my teeth in the night and am conscious that although I am coping well on the surface my subconscious may be resolving a few issues in the night. My younger son told me the day after I had told them about having to have the op that he had a dream about trying to chase a black ball (I don’t think you need to be a psychologist to work that one out). I told him that was because he was on my team helping to chase the cancer away.
One of my team (a neighbour) came to wash my hair for me. I am not ashamed to accept people’s offers of help. I know it makes them feel better to feel they are doing something practical to help and that I would do the same for them. It’s awful when you want to do something to help a person you care about and there’s nothing you can do, so it’s actually quite selfish to refuse offers of help.
Day 6
Drain out – massive boost as any pain I had tended to come from the drain site when I moved awkwardly. I can’t way it was pleasant but definitely do-able and worth a few seconds of discomfort to get rid of it. My BCN was really pleased with my progress and I explained it was down to the fruit and chocolate diet! Walked on air for the rest of the day.
Day 7
Had big row with OH and went for a walk to give myself space and to release my tension. Weather was fitting – gloomy and that kind of rain that almost doesn’t qualify as rain. Walked for over an hour; not up to my usual speed but it shows I still have strength when I need it.
Another team member came to wash my hair – I remember when the surgeon was talking to me about what the op would entail he mentioned not being able to lift my arm above my head at first and then I realised I wasn’t listening to what he was saying because I was on to planning how I would get my hair washed! I am sure different things are important to different people – that was my big issue, I hate having dirty hair!
Week one over, I have been doing my exercises religiously but tomorrow I move on to the harder set – another challenge to overcome!