Levels of anxiety had significantly risen overnight after being told “not to worry”. Yet another night of no sleep. After a significant wait at clinic this morning I was ushered into the surgeon’s room, along with 2 nurses and a medical student. The last time I had this crowd in a consulting room was when I was given the cancer diagnosis so it did nothing to steady the nerves.
However, a few minutes later, the surgeon told me that she thought there was nothing to worry about and the Breast Nurses (both of whom had had the honour of performing previous drains) repeated their contact details and told me to get in touch if anything was bothering me. The fact that the Lazarus boob has never bothered me (except when I thought it was cancer) is almost marginal to proceedings.
So…some time out on needles in breast (or what was a breast). I suspect not long but at least no imminent operation which has to be good news. That said, the surgeon does want to see me again in a month…whoo-hoo yet another clinic to fit in.
The rest of my time seems taken over with hospital administration which has become a huge part of life. Letter in post yesterday cancelled my consultant appointment on 9 September. Nobody at hospital knew why and consultant is away so it wasn’t her decision. Of course it was very stretched but kind staff (covering holidays) who had to unravel what was going on and trying to put me back into an appointment slot was nigh on impossible. It has taken 24 hours to come up with an answer which involves “squeezing me in” – inevitably at a different time. I have another appointment at the same hospital that day which was arranged to fit round this primary appointment so now I need to change that and await a callback. I am already steeling myself that this will have to be on another day and thus mean I will have 3 different days of hospital visits that week. Depending upon the outcome of 1st appointment I have yet another appointment in a different clinic for the following week which phew! now doesn’t need re-arranging. The fact that I am trying to get to work that week (and every week) does not even feature – cancer remains top priority and the rest of life is seen as secondary!
“Nothing to worry about” is beginning to sound less convincing and is wearing a bit thin now…The area that was my right breast has re-inflated over the weekend. After an early morning phone call from Breast Nurse to enquire about “developments”, my plans have changed again. As the draining seems not to be working, they have held off another round of this activity. Instead of pitching up at the hospital today for a selection of opinions, I have seen phlebotomy instead and filled, what must be enough blood bottles, to fill a blood bottle recycling bin! Now am booked into the multi-disciplinary Breast Clinic tomorrow morning.
Looks like I will definitely be scanned and seen by the elusive surgeon and it remains to be seen what other procedures/indignities will be laid on as part of the outing. I have been warned that the appointment may take some time…There seems now to be an added issue of having lost over 10 kg in weight in less than 2 weeks. Worry, anxiety and emotional turmoil seem the obvious cause to me which I am unsure will be picked up on any scan but hey…let’s see. I had seen the weight loss as the silver lining to the cloud and now even that is being turned into a possible problem.
My working week has been somewhat sidelined by this hospital and GP circuit, so I am attempting to do what I can from home between the array of medical fixtures…
The new right breast I keep sprouting has been shrunk again….One doctor, two nurses later. One nurse attempted the drain but was “worried”. Doctor, then introduced to proceedings who had one hand pushing needle into “breast” to drain, other hand holding ultrasound monitor. Second nurse with one hand dealing with the blood filled syringes and the other hand pressing down on “breast” to squeeze out all the blood. Very nice staff, very horrible process and, being honest, I could find better things to do to fill my days.
The continuing mystery is they don’t know where blood is seeping from, so back for Round 4 of this on Tuesday when we will do the same thing all over again plus a consultation with surgeon and possible scans. I don’t feel keen on seeing a surgeon as “seeing” seems to progress into action and I don’t want surgical action…but hey…don’t really want do go through endless inflation and deflation either. There is also now a concern about the amount of blood I am losing and it was mooted that I may now be anaemic – although no blood test done for that (to my knowledge) – maybe they used “breast blood”?
My suggestion of putting a mould in my bra so that at least the blood can present a boob type shape, did not go down well. Apparently if I just leave it and don’t continue to have it drained it will go rigid…and the problem is?
At least I get the weekend off.
I pitch and toss in the hinterland – an unhappy and tearful place. I still have some welcome and familiar spots to which I cling but my main markers of life have been thoroughly swept away and lost in the torrent of deceit which has destroyed the life I knew.
I return to the hospital on Friday for more draining. It looks as though there will be plenty to do as I have sprouted a new false (blood-filled, I assume) boob in only the past few days. Just hoping I can avoid investigation by a surgeon, in case “something” needs to be done.
I’ve had enough of these endless hospital visits and treatments, enough of living with the fallout from the crippling revelations of my husband and his brassy whore, the bare-faced cruelty of which I seem unable to get past. Guess it would have suited them so well if I had died last year – I could have avoided the truth of their affair and they could have avoided their sordid antics being outed. But hey…as I know we don’t always get what we want. And I have certainly had my fill of being brave and strong. Enough already…I just want to get off this train…
Inevitably the “quick” visit to the hospital today to have – what was my right breast – drained, turned into a multi-disciplinary approach. “Breast nurse” – yes…this is the name…very competently drained more old blood from the right. Then she suggested that she couldn’t drain it all as it was “loculated” and maybe I should be scanned and see the surgeon…today…..”Nothing to worry about…” of course…
Loculated, I think, means that the fluid I have gathered in my breast has formed a honeycomb and has hardened, making it harder to drain…Maybe it doesn’t mean that, but that was my understanding.
I was “nicely drained” by the nurse, then saw doctor..had ultrasound and more draining then back for “truss” fitting. Truss is my word not the word used – but I can’t remember that – The “product” is designed to work rather like breast binding – in the form of a velcro bandage type thing that I tightly wrap round myself . This is to encourage fluid not to continue to gather in the space available, by restricting the space available…Hmmmm…we’ll see….Who knew what a wide range of NHS products there were?
Then I see surgeon and nurse next week…so another hospital day for my week…but that’s OK as there’s “nothing to worry about”.
Cycle 18 completed on Tuesday…18 rounds of treatment…18! That stage may now be over but unfortunately the “leprosy” has decided, at this point, to get legs..and has erupted all over both arms in a predictably last ditch attempt to find yet another way to lay me low. Especially painful when the default position is that I am already at the lowest point I have ever been.
If there is any good news to be found it is that I have now “left” the Day Treatment Unit, never to return.
The Oxford hospitals nonetheless remain my playground…Back again on Friday for draining of, what was my right breast, which has swollen up again with molten fury…with the inevitable associated anxiety.
Monday is back for another echocardiogram – will the hi-tech equipment spot a completely broken heart I wonder? Can it be functioning? Really?
Tomorrow is my last treatment of pertuzumab – which, I hope, means that the “leprosy” may be gone before too long…and the antihistamines…and the antibiotics…I guess it may take more than a month or so as I am as itchy as ever the day before the next 3 weekly dose. A small chink of possibility at least…
When I get to the DTU (Day Treatment Unit) in the morning, will I talk to/say goodbye to “my crowd” ? – the people who are often there for treatment at the same time as me. The people I always acknowledge but to whom I have rarely spoken for obvious reasons..or they seem obvious to me!
I was thinking that maybe when I leave the unit there might be a passing out ceremony of some sort, then I realised that of course there won’t be, as so many chemo patients make return visits, almost round trips…That doesn’t sound anything near bearable at the moment…
Wonder if most have to be rounded up and forced in for second/third/fourth….times…I don’t think I will be back willingly. I don’t want to go back at all.
Last time I saw my oncologist she talked to me about a new drug which would be the next line of treatment for me, when I need it – Kadcyla. We didn’t discuss it at length other than this would be the best and newest way to deal with my cancer. I see on the BBC news this morning that the NHS has said No to this drug which is probably not great news for me.
BBC news Kadcyla
It appears that my experience is not uncommon…I have been reading studies that show that 35% of men leave their wives/partners when they get cancer. (35% is huge – why had I never heard of this?) For the most part these men leave for “ill judged” affairs. The same studies show that only 2% of women leave their husbands/partners in the same circumstances.
I am told that other countries in the world give women leaflets at diagnosis detailing this male cowardice along with the statistics….Not sure if forewarned is helpful…not sure I would ever have believed it…not sure what to make of it. Guess we all think our relationships are were different and special.
I am not the same person I was when I last went to work – parts of my anatomy are gone forever whilst the omnipresent cancer continues to fester within me (at a low level, I am assuming). Both left and right sides of brain have given up the ghost and I struggle to make even a business-like phone call without dissolving, plus I am told that I am suffering from (the equivalent of) a double bereavement in terms of my emotional losses.
But hey…mustn’t grumble eh? Need to focus on what I can control, which currently seems very little – my own values, moral compass and a stumble forward into this very uncertain future perhaps. It isn’t hugely reassuring to discover that my points on the life stress scale seem to equate with”at risk of illness”…..Isn’t this how it all began? However there are, it seems, still hordes of stressful events lurking out there ready to trip me up. I thought things came in threes not in battalions.
The immediate issue facing me is going to work tomorrow. I can’t even remember what I used to wear for work, let alone what I did when I got there…but maybe it will come flooding back. I did always go in and empty the dishwasher first thing. Hey…I still know how to do that and suspect it will still be there ready to be emptied…and it may be a great “can do” thing to kick-start the working day.
Only one medical encounter again this week (which is the lowest count I seem to get) until I ramp back up to several per week again which will include my last pertuzumab treatment. That said I should probably make an appointment to have the area, previously known as right breast, drained again as it is swelling back up to bumper breast proportions. Not rushing as I don’t want to be constantly attending the hospital to be drained of effluent…Just wonder how big the swelling could possibly get and what might happen if I leave it to balloon….Hmmm….