Tuesday, 26 May 2009

Tues 26th May 2009 'No regrets'

Do I have any regrets for choosing reconstruction? well today I think I did, because four weeks on and I'm still experiencing acute pain and fluid collecting along my back. I realise I'm probably being impatient and expecting too much, but it doesn't help. Last night I slept very little due to acute discomfort which seemed to come on just before bed time. Yes, I did have a busy day making lunch for family visitors, but I did nothing out of the ordinary. The only possible trigger for a flare up may have been a sneeze! It seems ridiculous I know, but I remember it pulling the muscle in my back and causing it to feel knotted and in spasm.

So today has been a dead loss as I've been too tired to be bothered with anything, yet frustrated and bored. Still, not long to our Skye journey, plus Roo and Gor have returned safely from their mega trip to New England.

When I'm in pain and tired I do wish I hadn't bothered, but when I look in the mirror at my reconstructed breast, I can't help but marvel at the result, so onward and upward and definitely 'NO REGRETS'.

Sunday, 24 May 2009

Sun. 24th May 2009 'I Has Hair'

It's a fab day today, warm and sunny. I slept better last night even though Graham was away and it felt a bit lonely.

I'm still having to take pain killers, but at least it doesn't feel as though I'm being sawn in half today. Being able to relax in the sunshine makes such a difference. Now all I have to do is not look around at the million and one jobs that need doing!

I've got hair, which looks darker on the photo, it's actually looking very grey, but I don't care. I also noticed that I'm going to need to shave my legs very soon (is that a down side?). Eyebrows - yes, eyelashes - not that evident yet, other body hair - yep!

Friday, 22 May 2009

Frid. 22nd May

A really awful night, couldn't sleep much due to pain and pressure from a new build up of seroma. I don't know if this is due to having the Herceptin infusion and saline flushes in my left arm, or a reaction to me potting three small plants (crouching pulls my left back). It may well be the latter which has inflamed the tissue again. If so it's very annoying and really highlights how limited I am if I don't want to keep upsetting the healing process.

I was going to ring the Breast Care Nurses this morning, but I've decided to wait and see if the fluid is absorbed again over the weekend. There is a risk of infection every time fluid is drained off and I'd rather avoid that. Also, Daisy is due for a coat 'stripping' this morning which takes about three hours and it would only complicate the day if we had to scoot off to York. I will increase the Diclofenac and Paracetamol again and generally take it easy - ha ha!

Thursday, 21 May 2009

Thur. 21st May 2009 'Herceptin Treatment No1)

Thankfully my first Herceptin treatment has gone without incident. The appointment was at 9a.m. so we had to be up and off early. I confess I was worried about yet another cannula in my right hand and my fears were not unfounded. Despite a good soaking in hot water, my veins were not playing. Eventually a vein was picked and the cannula inserted, but it was obvious pretty quickly that it wasn't working (I could tell 'cos it bloody well hurt). Another hot water soaking and we decided to go for the left hand, although those veins weren't wonderful. This time it was successful and after a saline flush and a baseline BP, temp and pulse, the Herceptin infusion was started. It runs very slowly over about an hour and I was given a buzzer to call for help if I felt unwell.

The treatment room was actually very busy this morning and everyone joined in general conversation and joked about their demise. At least three people told me how great my hair looked and they all commented on my patent leather shoes which made me feel good.

Graham stayed for the first three hours and then went out for a break. Once the Herceptin had finished I was able to relax and have a sandwich, read a bit, play Nintendo etc. It was pretty boring however and by 3.30p.m. when I had my last assessment, I was really ready for home and some pain killers.

So home now and happy that I can concentrate on getting ready for Skye. There is a possibility that I will experience some flu like symptoms tomorrow, but if that's all I can cope!

Later in the Evening: I have developed increased pain again, my breast feels rock hard and about to explode and the scar on my back seems to be building fluid again. I'm in for a poor night I think.

Wednesday, 20 May 2009

Wed. 20th May 2009 'Diamonds and Rust'

I haven't blogged for a few days simply because there's nothing major to report, it's been more a case of coping and discovering what I can and can't do at the moment. Typically I have felt able to do more than I should, not that this amounts to much ie: hanging out washing, changing bed covers and general house work. Unfortunately these activities have a delayed effect in relation to pain and I have discovered to my detriment that 24hrs later it feels as though someone is trying to saw me in half below my left arm and breast.

The above also occurs if I do too much bending or crouching, which I presume is because I'm working what remains of the muscle on my left back and the rigidity of this area from my shoulder blade to my hip is testimony of it's lack of flexibility.

One other rather strange effect, which I've been aware of since I returned to the ward after surgery, is the need to pass water more frequently, especially at night. I have to get up at least four times in the night and I pass a good amount of urine. Now the nurse in me is curious - I'm pretty sure it's not early Diabetes as I don't have any other symptoms. I reckon it's the inflammation and fluid lower down on my back and some pressure on the nerves near the bladder. Well that's my explanation, but I'll keep an eye on things.

So that's the 'rust', but the diamond is my new breast, which despite the remaining swelling and the patchwork circle, looks incredible. My delight with this piece of surgical brilliance makes me eager to show it off to close family, barring Michael (my brother-in-law) who goes very pale at the mere mention. The other diamond in the rust is the speed at which my hair is now growing, plus I also have some eyebrow hairs appearing. Would very much like to see some eyelashes now, but hey, patience patience!

Saturday, 16 May 2009

Sat. 16th May 2009

It's been a tough few days and I can't lie about the amount of pain and discomfort. I've managed to get through by reminding myself that the 'short term pain' will be worth the 'long term gain'. I know that from a psychological point of view I would have struggled without the reconstruction as my femininity and body shape is important to me.

When I woke up this morning I was immediately aware that the swelling under my arm had subsided ever so slightly and was less sensitive to touch. Lets hope this is the beginning of a gradual improvement.

Did I tell you that I've been trying contact lenses. Well I don't think they're going to work, especially as I managed to mistake baby moisturiser for cleaning fluid this morning - doh!

Been for a look around the Lotherton Hall Flower Show with my Sissy and Brother in Law. It was a welcome break, but I'm very tired now - need a sleep zzzzzzzzzz!

Note: I now have a noticeable covering of hair, very soft and rather grey looking, but it's hair!!

Thursday, 14 May 2009

Thurs. 14th May 2009 'fed up now'

Had a super day yesterday. Made some sandwiches and a flask and we took Daisy to Fraisthorpe beach, about an hour away. This sudden decision was partly due to an urge to walk on the beach, albeit wrapped in warm coat and woolly hat and partly to get Daisy used to a longer car ride before we go to Skye. It was lovely and sunny and the wind wasn't too cold. Daisy loved it, chasing her ball and running in the sea. The down side is that by evening I suffer increased pain even though I've only walked.

This Morning - Yes, I think I've reached the 'brassed off' stage. Constant discomfort which deteriorates into just bearable pain by evening is beginning to really run me down now. Four hourly pain killers don't seem to make much difference and although I get some sleep, it's very disturbed and each time I wake up it's excruciating. I was under no illusions about this operation, but even by my standards it's bloody tough. At times it feels like I've been crushed, then it can feel like someone has attached hooks to my reconstructed breast and is trying to pull it off. I know it will ease eventually, but right now I'm frustrated, unhappy and don't even have any enthusiasm for the coming holiday.

Monday, 11 May 2009

Mon. 11th May 2009 My personal 'Drainer'

Should start by saying thanks to my brother Alan and his lovely wife Tina who did 'meals on wheels' yesterday. Tina is an amazing cook and we dined on chicken stir fry, onion noodles, rice and pork, it was wonderful and we had a super day.

Sadly I slept very little last night due to the pressure of fluid which has built up around the wound on my back, so at 8.30a.m. I rang the Breast Care Unit and explained apologetically about my predicament - 'would it be possible to come in this morning and have the seroma drained', to which without hesitation came the reply 'certainly, come in at 10.30a.m. and we'll do that for you'. I know it doesn't sound much, but to have such a positive, instant reply was so refreshing and made me feel so much better.

So we arrived at the unit where Carole and Jackie drained around 100mls with a needle and syringe. So I now have, as my Son in Law Gordon put it, a 'personal drainer' as opposed to a personal trainer - ha! I also spent a few minutes chatting to them about how I feel right now and they were really supportive and understanding.

It does feel a bit easier, but I'm still getting 'breakthrough' pain despite paracetamol and diclofenac. I suppose I'll just have to be patient as it will get better in a week or so.

We picked Joe and Vickie (my son & his girlfriend) up on the way out of York. They came back with us and had some lunch. It's nice to see Joe looking happy and Vickie seems a lovely girl, lots of character and very bubbly.

Saturday, 9 May 2009

Sat. 9th May 2009 - Gifts, Cards and Company

What a lovely day! First of all I slept quite well last night, probably due to rest and regular pain killers.

Apart from the fact that it was a lovely day, I had the most wonderful bouquet of flowers delivered (inset)courtesy of my workmates - thanks guys you're all great!. You can't see from the photograph, but many of the flowers have small jewels inset at their centre.

Not long after, the postman delivered a package from Australia which contained a bar of Aussie chocolate (recovery food) and a super cookery book, so that Graham can cook me some nice meals! I do feel really lucky to have so many people supporting me.

Joan and Gerry arrived at 12.30p.m. and we had fish and chips, something none of us have had for a long time, they were lovely. Just after lunch Ruth and Gordon arrived for a visit before they set off on their 'New England' holiday.

So all in all it's been a super day and apart from being a little uncomfortable at times, I've felt quite well and really enjoyed all the gifts, cards and company.

Friday, 8 May 2009

Frid. 8th May 2009 'Good grief'

What a really crap night, I woke up at 2.30a.m. in alot of discomfort and didn't sleep thereafter despite pain killers. I just couldn't find any position where I didn't feel as though I was laying on bricks with somebody sitting on top of my chest. I thought I would be more comfortable having had so much fluid drained off, but no such luck, in fact it seems to have built up again. Sometimes when I'm sitting I get a 'trickling' feeling in my side/back and can only assume it's the fluid moving under my skin - uuugh!

I think yesterday was a bit too much, so sadly I may have to cancel a trip to York for lunch today. Probably for the best as my stomach is still playing up. Several hours after eating I get griping stomach ache, the kind that makes you sweat. This comes and goes until I suddenly need to rush to the loo. Oh well, just have to limit what I eat today - great!

6p.m. - I've had a quiet day as planned and I think it was a good decision, especially as I've been really uncomfortable with significant pain despite regular paracetamol and diclofenac. Our friend Alan came this afternoon so I was musically entertained by him and Graham. I doubt if tonight is going to be any better and I think by Monday I may need some more seroma draining.

Thursday, 7 May 2009

Thur. 7th May 2009 'Post Op Folow up'

It's been a long day, but on the whole a positive one.

My appointment was at 10a.m. and was on time. The nurse removed my dressings and all is looking clean and dry. Mr MJ then explained that any residual Ductal Carcinoma Insitu(DCIS) has now been removed and hopefully the chemotherapy will have dealt with the Invasive carcinoma. He was pleased with the surgery results and we discussed some possible adjustments once everything has settled down.

I had around 250 mls of seroma removed from my back, which should make me feel more comfortable, but he did say that it may need doing a couple more times over the next few weeks. The swelling under my arm is apparently the result of the reconstruction and may need 'tweeking' at a future date.

The next step is to start Herceptin and we agreed to return in the afternoon (as opposed to next week) to see the Oncologist and arrange my first treatment. We returned at 2p.m. but had a very long wait, which I wouldn't normally mind, but I was extremely tired by the time we were seen.

My First Herceptin treatment will be on May 21st and will be carried out on the unit. My only disappointment is that it's given via a cannula (I thought it would be a butterfly needle) and I was hoping I'd finished with large needles. Never mind, it is much less aggressive than chemotherapy, but can occasionally cause some unpleasant side effects. Surely I can't be as unlucky with this treatment.

Wednesday, 6 May 2009

Wed. 6th May 2009

Would like to say I had a good night, but unfortunately developed griping stomach ache yesterday evening followed by extremely watery diarrhoea (sorry if you're eating) which continued till bedtime. I'm at a loss as to why this should occur and can only imagine that it's a reaction to all the surgery, drugs and general trauma. Graham was ok, so it can't have been anything we'd eaten.

This morning It's still not settled so I'll have to be careful what I eat and drink which is a real pain as that's the only thing I look forward to on a day to day basis right now. The Seroma I was warned about has built up under my arm and across my back. My MacMillan Nurse rang yesterday and she said they would drain it off for me tomorrow when I go for my follow up appointment with my Consultant.

Graham had his first glimpse of my surgery this morning, which I know was difficult for him. It's not a pretty site, but he did agree that the breast reconstruction is neater than expected, it's the very long back wound that looks (and feels) the worst. There's also a small two inch cut under my arm pit, which I now assume is where he took the circular piece of skin to replace the nipple area.

In terms of pain, that's probably the hardest thing to describe, it varies from sharp knife like pain on moving (especially around the breast), to very deep muscular pain, with some nerve involvement, especially down my left back into the lumbar region. That area has a heavy numb feeling and if I touch it even lightly it's very painful, especially near my spine.

My aim now is to get suitably recovered for the trip to Skye in three weeks. I have my appointment tomorrow and will hopefully get some idea of how things are progressing and when the Herceptin will start.

Tuesday, 5 May 2009

Tues. 5th May 2009 'Good to be Home'

So good to be in my own bed last night and even though it was still a struggle to sleep, I was able to find a few hours of reasonable comfort, largely due to a 'V' shaped pillow. Wonder why they don't provide those in hospital?

Had a good look at my poor body this morning, even by my standards it does look pretty horrific. I still can't quite get over the size of the scar on my back which runs from between my shoulder blades down under my left arm. My left boob is pretty swollen again this morning and has now changed to a nice yellow colour. I am trying to move around slowly, but it is very uncomfortable. Graham is telling everyone that he's glad I'm home as the laundry basket was overflowing!

Monday, 4 May 2009

Free at last!

Just arrived home. Whoopee! Last night was the worst night I've had and I confess I sat up and had a good cry at one point. Initially I was told one drain could come out this morning and the other this afternoon. Fortunately Mr MJ came to see me - 'you must be bored out of your head by now' he said 'lets take them both out and see how you go' Oh boy, music to my ears.

-- Both drains removed at 12p.m. The second one wasn't very pleasant, I asked the nurse if it was attached to my foot. She said it was a 10" drain, long even in her experience. Anyway, I can go now and as Ruth and Gordon are in York and Graham is stuck in Selby Bank Holiday traffic, they are coming to take me home. Finally escaped at 1p.m. and once home really enjoyed a spaghetti bolognaise.

I have to say how well I was treated in Hospital. All the staff were superb and I think we are really lucky to have such a service. It's a pity the Government doesn't have the same view.

Friday, 1 May 2009

Thur. 30th April - Day two Post Op.

Here's a piccy of some flowers I received this morning from our friends Joan and Gerry - thrilled to bits with them :-)

Last night was awful, apart from the swelling I had epigastric discomfort and needed Gaviscon. I think they were worried I was having chest pain as they've ordered an ECG, but I'm sure it's just pressure, maybe made worse by the Diclofenac they gave me last night on an empty stomach!

Anyway, MJ came eventually and said he thought it was just the swelling and bruising. He wrote me up for a stat dose of Morphine (my pump came down last night) and that worked really well, I slept on and off all day.

Decided to walk down for lunch today, a bit wobbly, but good to get out of bed. Had loads of visitors in the afternoon, Pat, Mike, Adam, Fran, Helen and Graham. Graham looked dreadful, tired and fed up. I was really tired when everyone had gone, but it's nice having visitors as the days are long and boring.