Monthly Archives: March 2014

Hospital update by Patrick

Surgery done. Apparently it went “really well” and no lymphs taken so hoping for no “fat arm” syndrome. Breasts bandaged so cant see extent of change yet. Hopefully lost some weight while I’ve been here. Diabetes care has been fantastic…it can be done! May even be home tomorrow.

Will these hands ne-er be clean?

Whoo-hoo – I have had my last medical intervention before the big day….dental work done, stitches out so I am almost oven-ready (as it were). Lots of last minute preparations for Monday. I have my orders, for Sunday evening – I need to “become” (?) as “sterile” as possible before I arrive at hospital the next day…showering, hair-washing, clean “nightie” (mimed in a Miranda Hart kind of way), clean bedclothes before bed and repeat during night if I can’t sleep…I wasn’t worried about not sleeping before that suggestion…. And no mention made of either Stuart or cats – is the assumption that I won’t go near them or is it that they couldn’t possibly mind the night-long Lady Macbeth diversions? Who knows? Not sure our car is the most sterile of environments either, but I’m not going to over-fret about sterility!

Instead…I have created my own list of worries:

  • The state of the fridge…but….all things being equal Steve in the raspberry van will visit on Saturday morning and re-stock.
  • How long will my Kindle battery hold out whilst in hospital?
  • What if my “nightie” is not a “nightie”?
  • All the washing that will be created by the umpteen bed linen changes – just before I go AWOL
  • When will I be home again?
  • When will I be fit enough to blog?

I can’t pretend that there is not a level of anxiety about being cut open and re-designed but I don’t think that anything can be worse than chemo, and I managed that, so bring it on! What could possibly go wrong?….

On the launch pad – countdown begins…

Op all confirmed for Monday…looks like I will be first on list – I casually mentioned to the pre-op assessment team that I guessed it was to get the difficult one out of the way first. That raised a nervous titter and a rather delayed reassurance that “of course that is not the case it is only because you are diabetic”. Really?

I had to fill in one (of many) questionnaires – this one being an A4 page of things you might be worried about when you go to surgery – you had to grade each item from 0 – 10 (10 being extraordinarily worried). It included all sorts of random things like “pins and needles” to “housework”. It didn’t have any of the things I am extraordinarily worried about eg diabetic control, where my clothes might be when I am in surgery, whether the cats will be fed/happy in my absence and how soon I may be able to have a glass of wine…

I was also asked about how careful they had to be of my back whilst moving me about…Not sure what the answer to that is, as I assume the norm must be to move patients as carefully as they are able. I did add that I might need a cocoon of pure silk sheets and to be laid upon soft sheepskin. If they were expecting “difficult” might as well act the part! My expectation is that all patients will be treated with kid gloves!

I need to ring and confirm my “booking” on Friday…which just leaves dental treatment tomorrow, stitches out Thursday before the final countdown. Fortunately skin biopsy revealed nothing of note.

Whilst I move forward on my cancer journey…I had news that one of my dearest friends today received a diagnosis of mouth cancer. Whilst I am obviously in a “perfect” position to “mentor” her, I would prefer not to. Inevitably this highlights (yet again) the ubiquity of this horrible disease and my heart is breaking…

Dr Ross & I

I am finding that my mind is sprinting off in all types of random directions as it juggles with the bizarre components of my life. The latest of these is pondering celebrities who visit “the sick” in hospital…Usually, so far as I can make out, the shocked/surprised patient is stunned into silence by the presence of their hero/heroine. What a waste! If, by any chance, someone is quietly arranging a bedside visit from George Clooney for me, I would just like to say that I won’t be too starstruck to talk to him and am sure I can engage him in playful banter for some time. I am using this “waiting time” before hospital admission, productively, and am now well prepared for such an eventuality. I have even been practising my “surprised” look, coy smile and effusive greeting!

I have checked out George’s PR, publicist and booking agent – all of whom appear to be in LA!  (This is how I spend my days….a girl can dream!)

The new look for Spring 2014

Full steam ahead for right mastectomy and left breast reduction. Spent over an hour at the hospital yesterday viewing mastectomy scars and deciding which way to go on the other side. Think it will be the melon-slice approach…uh-huh! Can’t get too wound up in the look of the scars…being alive will be good enough for me.

Best news is that prostheses are not “dry clean only” they can just be rinsed with soapy water and hey..there are “special” swimming prostheses that are more chlorine tolerant (not on NHS though!). The prosthesis “starter pack” came out in a lovely silky bag  tied by a brightly coloured ribbon…this did not of course fool me into not noticing its contents! The starter pack – for those of you unlucky old enough to remember “Crafts” at school – is a kapok filled breast shaped cushion…You get 2 of these and just wash and re-stuff as required. You are not fitted for “regular” (how quickly removable body parts have become “regular” for me!) bra and prosthesis (which comes in a lovely gift type box) until surgery has healed or possibly even longer (after radiotherapy) so it is kapok for the time being. I think it was actually called “cotton wool” but it looked and felt like kapok to me…or maybe that doesn’t exist any more.

And so…the shopping element…Suggestion was that I buy a crop top (instead of bra) for post-op so that nothing is sitting on incision site. Fair do’s – but what size to get? This involved more head scratching as apparently the “norm” for breast reduction opposite a mastectomy is 2 sizes. But when, during any of this process, have I been the “norm”? If possible I would prefer more than this but then that potentially affects which operation I should have and whether surgeon is agreeable. Apparently the worry is that your clothes may not hang properly….Well, what a bonus, I say…time for a new wardrobe! I do feel that I would rather have as small a prosthesis as possible so need a breast to match! This is yet to be discussed and agreed so guess I will just make a stab in the dark at what size top to buy.

Also looked at several post-surgery bras from the lacy to the sporty although the idea of me in a “sports” bra seemed to make Stuart guffaw loudly! This, however, is something for another day and somehow I didn’t feel ready to practise putting prosthesis into special bra pocket.

Aside from this, there was far more information than I could possibly absorb…other than it looks like even lifting a kettle may be beyond me for a while. More on Tuesday when I see oncologist and have my pre-op appointment so I am ready for admission on Monday 31st. There seems to be a questionnaire about my biggest concerns preceding the medical checks…Suspect I may be the curved ball!

Blessings upon the wonderfully seamless oncology department who just link through with diabetes specialist nurses, the breast nurse I saw yesterday even knew the name and contact details of the diabetes nurse who “looks after” me. By the time I phoned her yesterday afternoon, when I got home “my” nurse already knew what I was having done and when and had already discussed the best way to go with my insulin pre-op and during surgery and to come and see me as soon as I was post-surgery. Hurrah for a team who share best practice!

Giant Brest!*

Yesterday brought forth 4 hospital appointment letters – oncology consultant, dermatology, orthopaedics and echocardiogram. As if this didn’t fill my diary enough I also had 4 new appointments for my 3 weekly regular treatment. Post-surgery it looks like it will be radiotherapy which I think means daily treatment for weeks – by then, I will be needing a diary manager! Am supposed to be exercising to re-build my stamina but I am struggling to find a “window” for this.

Good news is that at the moment I am still managing to fit some regular life in as well as being able to attend the Literary Festival next week. After that life may segue into a completely blurred world of hospitals.

Tomorrow is decision day re breast surgery. I have come up with a list of questions that I may have to try and prune today. Whilst obviously concerned about the procedures, pain relief and recovery I also have a myriad of other (more practical) things to ask. How many prostheses do you get/need? Do you wash them? by hand? washing machine? Do they need changing regularly? Are there different summer & winter varieties? (like duvets!). Also what size will reduced breast be? I had an accident in swimming pool  (no…not that sort of accident..) but the bra cup in my cossie tore (leaving me exposed!), which means I need a new one…but what size? Can I risk getting one to fit now or not?

I also seem fairly fixated on the fact that if I want to have a double mastectomy I need to see a psychologist. Fair enough but wonder why this is clinically considered to be worse than having toxic chemicals pumped through you and losing your hair. I suspect because it is permanent. I still think that I will be forever haunted by the hair loss rather than the breast loss.

* Giant Brest is the name of a friend’s bike shop in Brest (France) – just thought it was funny! Humour seems to be the best way to deal will all the above….

Back and forth

Moved away from all things breast based today and moved to orthopaedic-land. There is a “system” for this pre-operative clinic that I attended which involves moving between 7 people/tests.  You need to see all 7 before you can leave – except (naturally) I didn’t! I did wonder whether we were in the lobotomy clinic rather than orthopaedic clinic – as the “blue” form (with these 7 processes on) asks you to carry this form at all times whilst in the department and ask each person you see to tick the appropriate box, so that when and only when, you have 7 ticks you can go home….I didn’t tick any (nor did the clinicians) and yet can still remember which 3 of the 7 steps I completed! No memory clinic needed yet…that’s a bonus!

I met with a doctor who only seemed interested in listing my medications on another form of several pages in length (I had already filled in a similar one at home and another two when I arrived at clinic this morning) which, if I had seen nurse first – they would have done. I have answered questions this morning on everything from the height of my toilet, the style of my sofa legs to the level the pain was affecting me doing a variety of “tasks” from sex to housework!

I was asked for my insulin dosing range which is not the easiest question as my dosing depends on what I am about to eat and what my blood sugar is. I asked why this was needed as (aside from pre and during surgery) I would manage my diabetes myself, which seemed to be an issue…(furrowed brow and silence) I did try to explain that my 2 previous experiences of hospitals managing my insulin intake was disastrous and I wasn’t going there again (silence). The diabetic nurse team are happy to do a sliding scale for insulin for the surgery and I am happy to sign whatever waiver is necessary to be able to manage my own insulin whilst in hospital (silence) – but this obviously doesn’t fit the system….although interestingly it wasn’t an issue for the breast surgeon who positively encouraged this “help”. I really hate how “difficult” I am seen when I just want to manage my own diabetes care in a hospital setting.

I then moved to see the consultant who seemed far more at ease with this approach, phew! He was however quite concerned about the number of risks there were with this major back surgery. We discussed other ways of managing the problem and agreed that a nerve blocker injection in the spine might be a better starting point. Whilst it is neither a long-term solution nor long-acting, it could buy me some time whilst the breast surgery and recovery takes place. I will be sent an appointment for this with a follow-up a month or so later so that we can re-examine the options when I am done with the breast surgery.

The thought of not facing 2 lots of imminent surgery is a relief. So instead of multi-tasking my anatomy I can now focus on next week’s meeting with my breast nurse. This is a time to look at photographs of mastectomies, scars and more, as well as “touching up” prostheses, looking at suitable bras and making a decision! I know this will be done in the same professional and caring way as the rest of the breast cancer meetings – in a cheerful patient-friendly room – but I just can’t help summoning up the encounter in a seedy, sticky floored  Soho location instead. My imagination is running riot at the breadth of possibilities…What’s the matter with me?

My right boob tried to kill me…

My 100th blog…never thought I would be able to rant on to this extent!

As my right boob tried to kill me I am not giving it a second chance. Two hospital appointments down this week and progress is being made. It was relief to hear that my recent scans were “really good” showing virtual elimination of disease in my lymph nodes and no signs of any change anywhere else which means that the treatment I am on (herceptin and pertuzumab) is doing its stuff with gay abandon!

With this in mind we move on to mastectomy (because the diseased breast still shows residual signs of the cancer both in the breast and in the skin). I will have 2 breast reduction options for the non-diseased side. I need to discuss this with breast nurse who will show me photographs to help me decide, one option with nipple, one without. Can’t help thinking of eye tests when they ask you can see any difference with or without the lens and I rarely can – “Is it better with..or without?”…Rather feel I am going to look distinctly odd any which way!

Because of my type 1 diabetes it is important that I have as short an operation as possible, so options of both reconstruction and implants are taken away, especially as I will have as much skin removed, from the offending breast, as possible. And so…I enter prosthesis world.

It is good news indeed that they are no longer considering a lymphadenectomy (taking out all the previously diseased lymph nodes) which would make me high risk for lymphoedema…or a big swollen arm in layman’s terms! So whilst I may not be going topless – I will at least be able to T-shirt happily! Stuart asked (as a joking aside) the surgeon about NHS resources available for buying a new wardrobe after the op and guess what…it turns out that Macmillan do have grants available for this very purpose.

I can also have my own swimming costume “adapted” if I want – think I am getting into realms of information that are decidedly odd…next one is about bras…and beyond! I can hardly wait! There will also be radiotherapy after all this to make sure lymph area is well and truly zapped to as far away as it can be dispatched.

I still have to go to the orthopaedic appointment on Friday about my back surgery but the breast surgery has now been pencilled in for 31 March which seems alarmingly close.

More questions than answers

That pesky arm rash that I have been dealing with since last summer may be more worrying than originally thought and now unveils itself to be more like a landscape of suppurating sores than itchy patches. I had an “urgent” appointment with dermatology this week and they have referred me for an “urgent” biopsy. Whether it is “urgent” because I can’t have surgery with an infection going on, or a side-effect of the medication or whether there is something more sinister going on, is anyone’s guess. I set off for these appointments with my normal questioning and curious head on but, once in the consulting room, seem to slump into full-on accepting patient mode where I hardly speak and cannot conjure up the questions I knew I wanted to ask. It is not even that I don’t want to know, I do…but my formulating questions facility just ups and goes as I enter hospital premises.

Still a trip round the whole medical circuit next week – lots of departments to challenge my questioning skills….GP on Monday, medical photography and breast surgeons at John Radcliffe on Wednesday, biopsy at Churchill on Thursday and pre-op at Nuffield Orthopaedic Centre on Friday. Possibly even scan results this week too…Maybe then I may be due a week off the medics.

Seem to be bobbing along in my little life raft on the crest of a wave, the spray from the spume tickling my face – gingerly skipping over the powerful undertow that keeps trying to get me!

I am also dressed for the life raft in a T-shirt that tells everyone “I’m kind of a big deal on my blog”. Sense of humour has not yet abandoned ship!