(Continuation from Phase 2-OVER! (Part 1)
The next few days in hospital I noticed an accumulation of fluid not only at the mastectomy site, but swollen on my abdomen, lower tummy and even groin - it looked like I had literally doubled in size. I informed the Ward Sister and consequently saw a doctor - who reassured me that although this was no emergency I would see the same locum doctor who would assess me further after the weekend. On the Monday afternoon this doctor assessed me, and as the swelling had not gone down, requested to aspirate the area once again (withdraw fluid). During a morning visit from the pain nurse it was discussed if this procedure was to be performed again I would have access to morphine and entonox (gas & air), and so informing the pain nurse of the oncoming procedure all drugs to be used was prepared and ready to go. Ahh yes, I remember you entonox - a familiar feeling to this pain control as I was able to fully relax. Only 50mls was withdrawn and I was now feeling extremely sore by this stage. It was agreed that I would see the surgeon in clinic within a few days and informed that despite the extensive amount of bruising and large swelling that all was ok. I didn't feel like all was ok though. It was previously agreed that I could go home after this procedure as I was medically stable but advised to spend another night in hospital due to the procedure and drugs given. I accepted the offer of another night's stay - after all I was in good company with my friends being nursing staff! On the positive side I did get to meet the prosthesis lady - and after an awkward introduction got on really well. I learned that only soft padding was used until the tissue had healed enough to allow a special made prosthesis and bra to be used - which will take about 6 weeks. Feeling much better about this, I set to look at the numerous leaflets and booklets left to furnish me with further information and advice.
I was discharged the following day. I found saying goodbye to the staff on the ward hard and fighting back the tears gave them all a hug. It felt good to finally be free. But my mind was far away from going home - instead hubby and I made our way to a comfy pub! I sat down in the cosy couch, cuddled up with hubby and a bottle of cider - only this was making me quite tired and sleepy. An hour and a half later and still clutching the same bottle hubby drank the last of my cider and we went home. As I found I couldn't hold my eyes open I went straight upstairs to bed where I slept for most of the afternoon. That evening and onwards was the start of my rehabilitation. Or so I thought. My husband had previously arranged the rest of the week off from work in order to help out. As I had seen enough of my house over the last 6 months the rest of that week was spent meandering around different shopping towns, going for coffee and just enjoying my husband's company. Only the first day of doing this I knew I had overdone things and found the swelling to be bigger and more painful.
As days wore on the original bruising from the lowest point had now spread to the groin and top of my legs - gravity had taken over.
Later that week I saw the surgeon in clinic. The results from the op was in - good news. Firstly, all of the remaining 16 lymph nodes that was removed none showed no evidence of cancerous cells - the cancer had no further spread. Secondly, the tumour that grew to 2.5 cm was reduced to 9 mm-showing that chemo had been extremely effective. So then, extremely good news. As by this stage I was quite concerned about the extensive swelling that was showing no signs of reducing in size, I discussed this with the surgeon. I was told - quite nonchalantly- that all is ok, the swelling is 'quite normal' and that he is sorry that other staff have made me anxious. This surgeon offered to aspirate the area again - and in doing so was unable to withdraw any fluid from the site. I was told that the swelling had formed a 'blackcurrant jelly' substance which was why fluid was not forthcoming and the swelling would eventually reduce. Despite his best efforts, I was not reassured that nothing was wrong. Especially when the swelling felt like I was carrying 2 large bricks around my chest - tight, heavy and extremely uncomfortable.
The weekend was good - catching up with lots of family members with bbq's and lots of fun times. The following week my mum came over to help out as hubby returned back to work. Each day I tried hard to get myself back to normality - completing physio exercises that was given and taking things very easy. However I could not shake off the feeling that something was still not quite right about the swelling. I had my first radiotherapy appointment at a different hospital yesterday in order to assess the area and to mark out the relevant spots for the oncoming treatment starting in a few weeks. I was called into the room and showing the radiographer the swelling from the mastectomy all treatment was then stopped as the swelling had made it impossible for any treatment to continue. The staff apologised profusely, saying they will ask one of their own doctors to assess the swelling and await for further advice. After a 20 minute wait I was seen by a different doctor who asked lots of different questions and then examined the bruising and mastectomy site. It became clear he was concerned about the amount of swelling I had. Then came a clue to what was going on - I was asked if all previous withdrawals of fluid was guided by ultrasound or 'gone in blindly?' To which I answered that I have not had an ultrasound at all post op - leaving me to now believe that all attempted aspirations was not successful due to no attempt made to see beyond the superficial layer of skin - and should have been looked at to find out where the fluid was actually accumulating inside the tissue layers. With this information, the doctor made me an urgent appointment for the breast unit the same day for further examination under ultrasound. As this appointment was 2pm, hubby and I set off to have lunch and a sit in the sun!
2.20pm I was called in to see the radiographer. The entire area was closely examined under ultrasound. The doctor and senior radiographer was called in and discussed with myself and hubby that indeed there was an extensive collection of fluid around the lateral chest wall. A suggestion was made to aspirate with local anaesthetic. I felt very glad to hear this as suddenly I didn’t feel the hypochondriac I had been made to feel over the last 2 weeks. So, as the area was numbed completely, 60ml syringes were being passed over to the radiographer. As the staff was talking to me (distraction) I was aware more and more syringes were being used. I checked to make sure hubby was ok and still conscious! and finally the procedure was over. It was then I was informed that 11 syringes had been used to withdraw the fluid and a whooping 720 ml of serous fluid had been removed from the mastectomy site. 720 ml! As I stood up it felt like I didn’t have bricks plastered to my chest anymore and, in fact, I felt fairly normal with a small amount of swelling. The radiographer warned it would be normal if the swelling returned, if so to call the hospital and an immediate appointment would be made to ensure this fluid is removed. The radiographer also stated that she was surprised she didn’t get a call from the surgeon or his team to perform this procedure. So, what I thought might be a waste of time appointment turned out to be very productive and effective time spent. I now feel that I have been completely fobbed off by my surgeon when it was clear that all was not normal at all. I also feel angry that this hospital has had to mop up the original hospital’s evident cock-up. WHEN are things going to run smoothly for me? In this sorry state of affairs, things have been bad from start to finish. For this reason and the other cock-up of the tumour spreading that I am now going to start pursuing a complaint and compensation claim – especially as this is now going affect my rehabilitation resulting in a delay to return to work.
So, to try and get a little respite from all of this we are going to enjoy seeing my extended family. I know there are corrupt organisations out there – but I don’t feel that the care I have received has been corrupt, just lazy and opinionated. This has to change – and if it takes me to complain to prevent others going through this same bad journey that I have, then so be it.
Friday, 29 July 2011
Phase 2 - OVER! (Part 1)
So now, 2 weeks post op. Feeling much better, but I also feel like something is not quite right. To explain...
The op itself went well. The previous evening enjoyed the last night by going to bed at 3am, and by the time I got to bed had around 4 hours sleep! Got to the hospital around 11am as requested after saying my goodbyes to my children - this all felt very surreal. I was trying hard not to let my anxiety turn into tears - which I also was aware my husband was struggling to fight back the tears too. Once we was escorted to my bed space, the nurse and team completed all the necessary paperwork. The op itself was at 1.30pm, and as my husband was allowed to stay with me until I went in, we both tried hard to keep the conversation light to pass the time quickly. I felt grateful at this stage I previously had minimal sleep - as I was feeling quite tired this took away any anxiety. At half one precisely, staff assisted me to theatres, and I said my goodbyes to my husband. Minor adjustments was made by the nurses as I lay on the table, and the anaesthetist gave me her 'special medicine' - I was out for the count. I woke up briefly in recovery, took a few sips of water and went straight back to sleep. I woke again as I was being taken back to the ward and I felt very pleased - I knew the op was over and was happy I was not in any pain or discomfort. After drifting contineously in and out of sleep I saw my husband and children as it was visiting time. I was aware that during the middle of conversation I would drift off to sleep and wake up again - but I couldn't control this at all (my hubby found this most amusing!) When visiting was over I settled in for the night and had a chat with my nurse and previous colleague. I still felt good as I had minimal pain and swelling - I also felt pleased as I remembered info from being a student for effective use of my pca - a controlled morphine pump for pain relief! After a comfortable night, the ward sister informed me that I was going to be transferred to another ward - and then assessed the wound. Although she spoke of slight swelling around the back, I didn't feel anything untoward and was happy to be transferred to the ward where I had previously worked as a health care assistant as well as a student for many years. As I packed my stuff ready for the move I was aware no-one had spoken to me about a prosthesis and I raised this with the Sister (at the previous pre-op assessment I was informed I would see by a lady who specialises in prosthesis and bra-fitting for mastectomy ladies). An hour later Sister came back saying this person wasn't around - with this I felt quite upset as I didn't want to be discharged without this in place which would make me feel extremely unwomanly, self-conscious and low - especially as I hadn't wanted the mastectomy only in the first place. This was rectified by the Sister obtaining a 'softie' for the mastectomy site, and although this made me feel a little better I still felt as if I had been somehow overlooked and forgotten.
From the moment I arrived on the ward until the time I went home, I was made to feel very special, having excellent nursing care and attention - I knew most members of staff well and had kept in-touch with them. Within 5 minutes of being on the ward I had my own private room, belongings taken care of, cards and presents nicely displayed, bed sheets drawn back, pillows plumped, a cup of tea and a box of chocolates thrust into my hand!! I would like to say a huge thanks to all staff involved in my care - you guys really did help me during what turned out to be a difficult time. However, within a couple of hours this lovely experience turned to sour grapes - I was assessed by the locum doctor who decided I needed fluid to be withdrawn by needle and syringe as by now I had a rather large build-up of fluid around the mastectomy site. I agreed to this as the area was completely numb so was unable to feel anything. Everything was set up and with a nurse assisting the doctor removed 360ml of fluid around the chest wall. As the doctor was trying to remove more fluid by 'milking' around the chest and side I suddenly felt quite sick - I notified the nurse, then I felt very 'heady' - again I told the nurse. All I can remember then is being flat on the bed with my legs positioned in the air with oxygen delivered via a nasal canulae - I had lost consciousness for apparently 30 seconds! Quite why this happened I still do not know. A short while later the doctor continued, but as no fluid was forthcoming, stopped the procedure and called upon the ward staff to take me to x-ray to confirm I did not have a pneumothorax (collapsed lung) from this - upon hearing this I almost lost the plot! But after having 2 x-rays, the staff confirmed that I did not have a pneumothorax. Breath of relief here then! The chest area had been dressed with a compression bandage - so as well as the swelling I had bulky and tight padding. Teamed with the procedure I was left feeling sore, swollen and extremely uncomfortable. I noticed bruising from the mastectomy, which I expected, but I also had extensive bruising around the front of the shoulder, chest, side and stomach. I was left feeling quite literally battered and bruised.
This blog entry is continued on Phase 2-OVER! (Part 2)
The op itself went well. The previous evening enjoyed the last night by going to bed at 3am, and by the time I got to bed had around 4 hours sleep! Got to the hospital around 11am as requested after saying my goodbyes to my children - this all felt very surreal. I was trying hard not to let my anxiety turn into tears - which I also was aware my husband was struggling to fight back the tears too. Once we was escorted to my bed space, the nurse and team completed all the necessary paperwork. The op itself was at 1.30pm, and as my husband was allowed to stay with me until I went in, we both tried hard to keep the conversation light to pass the time quickly. I felt grateful at this stage I previously had minimal sleep - as I was feeling quite tired this took away any anxiety. At half one precisely, staff assisted me to theatres, and I said my goodbyes to my husband. Minor adjustments was made by the nurses as I lay on the table, and the anaesthetist gave me her 'special medicine' - I was out for the count. I woke up briefly in recovery, took a few sips of water and went straight back to sleep. I woke again as I was being taken back to the ward and I felt very pleased - I knew the op was over and was happy I was not in any pain or discomfort. After drifting contineously in and out of sleep I saw my husband and children as it was visiting time. I was aware that during the middle of conversation I would drift off to sleep and wake up again - but I couldn't control this at all (my hubby found this most amusing!) When visiting was over I settled in for the night and had a chat with my nurse and previous colleague. I still felt good as I had minimal pain and swelling - I also felt pleased as I remembered info from being a student for effective use of my pca - a controlled morphine pump for pain relief! After a comfortable night, the ward sister informed me that I was going to be transferred to another ward - and then assessed the wound. Although she spoke of slight swelling around the back, I didn't feel anything untoward and was happy to be transferred to the ward where I had previously worked as a health care assistant as well as a student for many years. As I packed my stuff ready for the move I was aware no-one had spoken to me about a prosthesis and I raised this with the Sister (at the previous pre-op assessment I was informed I would see by a lady who specialises in prosthesis and bra-fitting for mastectomy ladies). An hour later Sister came back saying this person wasn't around - with this I felt quite upset as I didn't want to be discharged without this in place which would make me feel extremely unwomanly, self-conscious and low - especially as I hadn't wanted the mastectomy only in the first place. This was rectified by the Sister obtaining a 'softie' for the mastectomy site, and although this made me feel a little better I still felt as if I had been somehow overlooked and forgotten.
From the moment I arrived on the ward until the time I went home, I was made to feel very special, having excellent nursing care and attention - I knew most members of staff well and had kept in-touch with them. Within 5 minutes of being on the ward I had my own private room, belongings taken care of, cards and presents nicely displayed, bed sheets drawn back, pillows plumped, a cup of tea and a box of chocolates thrust into my hand!! I would like to say a huge thanks to all staff involved in my care - you guys really did help me during what turned out to be a difficult time. However, within a couple of hours this lovely experience turned to sour grapes - I was assessed by the locum doctor who decided I needed fluid to be withdrawn by needle and syringe as by now I had a rather large build-up of fluid around the mastectomy site. I agreed to this as the area was completely numb so was unable to feel anything. Everything was set up and with a nurse assisting the doctor removed 360ml of fluid around the chest wall. As the doctor was trying to remove more fluid by 'milking' around the chest and side I suddenly felt quite sick - I notified the nurse, then I felt very 'heady' - again I told the nurse. All I can remember then is being flat on the bed with my legs positioned in the air with oxygen delivered via a nasal canulae - I had lost consciousness for apparently 30 seconds! Quite why this happened I still do not know. A short while later the doctor continued, but as no fluid was forthcoming, stopped the procedure and called upon the ward staff to take me to x-ray to confirm I did not have a pneumothorax (collapsed lung) from this - upon hearing this I almost lost the plot! But after having 2 x-rays, the staff confirmed that I did not have a pneumothorax. Breath of relief here then! The chest area had been dressed with a compression bandage - so as well as the swelling I had bulky and tight padding. Teamed with the procedure I was left feeling sore, swollen and extremely uncomfortable. I noticed bruising from the mastectomy, which I expected, but I also had extensive bruising around the front of the shoulder, chest, side and stomach. I was left feeling quite literally battered and bruised.
This blog entry is continued on Phase 2-OVER! (Part 2)
Friday, 8 July 2011
Phase 1 - OVER!
Well, I'm updating this blog at 6.30 in the morning of an extremely surreal day before. Let me explain...
The last round of chemo was due yesterday. I went through the usual build up to chemo by feeling quite low, with my legs extremely sore and achy and still not able to move well - climbing a flight of stairs completely wiped me out. In fact I saw the GP on recommendation of the chemo nurses who consequently wasn't able to help and saying this was just a side effect of the chemo. Great - I was left feeling extremely swollen all over, gained weight all over my body due to the steroids that I was taking and having tree-trunks for legs. So, perhaps one can understand my apprehension for going to the last chemo session - in particular on Thursday night by managing to hang out the last evening before chemo by going to bed as late as possible - 3.00am!
Anyway, we got to the hospital (hubby and I!) for the usual time Friday morning. Got called in to see the consultant, and after waiting for a while nothing quite prepared us for the news that was about to be delivered - after briefly chatting with the consultant he had decided to stop the chemo from going ahead. I amost did a double take, saying something stupid like "what, really - are you sure?" Although I was obviously pleased this was the recommendation I also did not want to jepordise complete recovery from this horrible disease. The consultant explained that as I have reacted quite significantly to the last 2 rounds of chemo with hospital admissions on each one that any benefits the chemo had was outweighing the side-effects I was going through. I sat there and just listened to this - immediate relief flooded in but I couldn't completely grasp that I wasn't going to have any more chemo - in particular as I had been preparing myself during the week (as I normally do) for the next chemo cycle, and having experienced so many nasty side-effects was also mentally preparing for the next hospital admission as I have felt so unwell in the past. So, having prepared so much for what would have been the last round of chemo has strangely taking a long time to accept that I now will not have to go through this anymore. I do, however still have to get over the swelling and problems this has caused my legs.
Then came the next out-of-the-blue news - as the chemo has been stopped this meant that the operation date for the mastectomy and removal of all lymph nodes in the axilla was to be bought forward - possibly for Thursday next week! I was happy with this suggestion as I just wanted all treatments to be over as soon as possible. To have this confirmed the lead nurse made the appropriate phone calls and did all the pre-admission checks there and then and informed me that she will call me later in the day to confirm the op for Thursday. During this time I was having the usual 3-weekly herceptin intravenous treatments as, although the chemo has stopped the herceptin will continue as the side-effects from this drug are minimal- that is compared to chemo. So, leaving the hospital became quite a surreal feeling with neither of us not quite knowing what to expect - or prepare for.
Well, what better way to 'celebrate' the end of chemo than visiting the nearest watering house!! As I have not touched alcohol since being informed that I would need to have chemo I thought this was long overdue - and so chatting with hubby about the oncoming weeks enjoyed my first tipple. It was then I had the phonecall from the hospital to confirm the op for Thursday. All plans were set to go. Still trying to come to terms with no chemo, it was equally as difficult coming to terms that the next focus was a major op. Both myself and husband have discussed this quite extensively at the beginning of all of this so we already are aware of the factors involved. But this doesn't take away the new feeling of reality hitting - hard. I am very aware of my husband's concerns - how will I feel once the op is over knowing that I will have one breast completely removed and to be padded out with a prothesis? At this stage if I'm honest I do think I will struggle slightly with this, but also knowing that the tumour has been completely removed will hopefully keep me on the level. And this is only temporary - for when the time is right (recommendations between 12-18 months) I would probably opt for a breast reconstruction - for me this will make me feel more 'womanly' again, although I am also aware my hubby will not see or treat me as anything different despite what happens.
As for today and the rest of this weekend - my purpose is to enjoy these last few days before Thursday - where afterwards recovery will take some weeks that will leave my shoulder, arm and chest sore and uncomfortable but (I have been told) pain can be kept at bay by strong painkillers. I think of this op as not having the same consequences as chemo did, however also aware this is permanent - but with good reason. It does feel like my life is starting to get back on track, as the chemo has been very demanding and tough that has required all my efforts in getting better on each successive cycle. I wonder now how I will feel about life after the op - nothing will please me more to get back to my old self but I have changed - and am going to change both physically and mentally over the oncoming week. Still not sure how to feel or what to expect. As the saying goes time will tell... And, of course, when things do change or I feel in the need to offload - guess what? - you know I'll be blogging again!!!
The last round of chemo was due yesterday. I went through the usual build up to chemo by feeling quite low, with my legs extremely sore and achy and still not able to move well - climbing a flight of stairs completely wiped me out. In fact I saw the GP on recommendation of the chemo nurses who consequently wasn't able to help and saying this was just a side effect of the chemo. Great - I was left feeling extremely swollen all over, gained weight all over my body due to the steroids that I was taking and having tree-trunks for legs. So, perhaps one can understand my apprehension for going to the last chemo session - in particular on Thursday night by managing to hang out the last evening before chemo by going to bed as late as possible - 3.00am!
Anyway, we got to the hospital (hubby and I!) for the usual time Friday morning. Got called in to see the consultant, and after waiting for a while nothing quite prepared us for the news that was about to be delivered - after briefly chatting with the consultant he had decided to stop the chemo from going ahead. I amost did a double take, saying something stupid like "what, really - are you sure?" Although I was obviously pleased this was the recommendation I also did not want to jepordise complete recovery from this horrible disease. The consultant explained that as I have reacted quite significantly to the last 2 rounds of chemo with hospital admissions on each one that any benefits the chemo had was outweighing the side-effects I was going through. I sat there and just listened to this - immediate relief flooded in but I couldn't completely grasp that I wasn't going to have any more chemo - in particular as I had been preparing myself during the week (as I normally do) for the next chemo cycle, and having experienced so many nasty side-effects was also mentally preparing for the next hospital admission as I have felt so unwell in the past. So, having prepared so much for what would have been the last round of chemo has strangely taking a long time to accept that I now will not have to go through this anymore. I do, however still have to get over the swelling and problems this has caused my legs.
Then came the next out-of-the-blue news - as the chemo has been stopped this meant that the operation date for the mastectomy and removal of all lymph nodes in the axilla was to be bought forward - possibly for Thursday next week! I was happy with this suggestion as I just wanted all treatments to be over as soon as possible. To have this confirmed the lead nurse made the appropriate phone calls and did all the pre-admission checks there and then and informed me that she will call me later in the day to confirm the op for Thursday. During this time I was having the usual 3-weekly herceptin intravenous treatments as, although the chemo has stopped the herceptin will continue as the side-effects from this drug are minimal- that is compared to chemo. So, leaving the hospital became quite a surreal feeling with neither of us not quite knowing what to expect - or prepare for.
Well, what better way to 'celebrate' the end of chemo than visiting the nearest watering house!! As I have not touched alcohol since being informed that I would need to have chemo I thought this was long overdue - and so chatting with hubby about the oncoming weeks enjoyed my first tipple. It was then I had the phonecall from the hospital to confirm the op for Thursday. All plans were set to go. Still trying to come to terms with no chemo, it was equally as difficult coming to terms that the next focus was a major op. Both myself and husband have discussed this quite extensively at the beginning of all of this so we already are aware of the factors involved. But this doesn't take away the new feeling of reality hitting - hard. I am very aware of my husband's concerns - how will I feel once the op is over knowing that I will have one breast completely removed and to be padded out with a prothesis? At this stage if I'm honest I do think I will struggle slightly with this, but also knowing that the tumour has been completely removed will hopefully keep me on the level. And this is only temporary - for when the time is right (recommendations between 12-18 months) I would probably opt for a breast reconstruction - for me this will make me feel more 'womanly' again, although I am also aware my hubby will not see or treat me as anything different despite what happens.
As for today and the rest of this weekend - my purpose is to enjoy these last few days before Thursday - where afterwards recovery will take some weeks that will leave my shoulder, arm and chest sore and uncomfortable but (I have been told) pain can be kept at bay by strong painkillers. I think of this op as not having the same consequences as chemo did, however also aware this is permanent - but with good reason. It does feel like my life is starting to get back on track, as the chemo has been very demanding and tough that has required all my efforts in getting better on each successive cycle. I wonder now how I will feel about life after the op - nothing will please me more to get back to my old self but I have changed - and am going to change both physically and mentally over the oncoming week. Still not sure how to feel or what to expect. As the saying goes time will tell... And, of course, when things do change or I feel in the need to offload - guess what? - you know I'll be blogging again!!!
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