With wedding ring discarded (the wedding ring I wouldn’t remove for my mastectomy op, only 3 months ago ) I turn to my new, reliable companion, Alan. I bought Alan very cheaply and he is to be my new sidekick. He is a red pen bearing the message “Hi, I’m Alan and I’ll be your pen until I run out” – straightforward and honest..just perfect!
So today it is back to the hospital – it’s Monday so it must be Dermatology. Now we know what the leprous rash is I expect there will be little to discuss, except I imagine, the sideshow elements – a host of more photos and a variety of consultant onlookers to check out its quirky presentation. Unless of course they have other plans which is always a possibility.
Then tomorrow back for more treatment of the leprosy drug. The final dose of this will now be August 12 so the end (of going to the chemo suite, not the treatment) is at last in sight.
I had planned that sometime around now I would have a small party to burn my bras (to symbolise the mastectomy rather than from a feminist perspective but hey..both are good). I let the date for the party drift for obvious reasons. In the meantime I have discovered that a friend’s son is volunteering on a project in Tanzania and high on the list of the things they need for the women of their community is….bras. That seems a far better way to “celebrate” so I have sent my bras to Tanzania. If anyone else would like to do the same, for mastectomy reasons or the million other reasons why we abandon bras, let me know and I will let you have the address where you can send them (in London).
I could of course still burn the chemo headwear but it doesn’t have the same ring as “bras in the brazier”
I started this blog so that I could be honest about the way things were….shame my husband couldn’t be honest with me. Even when I asked the direct question…several times…
So it is true mid-life crisis, this “different life”. Now I understand….It means that he is carrying on with one of my best friends. But…he didn’t leave me “because of that…” – so that’s all right then..? A steamroller lack of respect from 2 people I both confided in, trusted, and counted on. “I never wanted it to happen” doesn’t quite cut it, does it? And from a friend, who should know better, who I helped and supported when her husband walked out on her. With friends like this, who needs enemies?
I had wondered if the army of snails massing by the pond was a portent of something else…and it was…
Whilst I know that it is disaster for both my cancer and diabetes to be stressing and harbouring the most malevolent toxic thoughts, my gut feeling is to wish vitriol and the 7 plagues upon them both, in the hope that this includes the deepest of unhappiness, ill health, despair, loneliness and isolation and even a half of what I’ve been through this year.
I can’t believe the avalanche of love and support that has come through since yesterday’s blog. I so appreciate it all. I really don’t feel able to contact you all individually as I am just overwhelmed, but you all know who you are…and lying low does not mean down and out. For the time being I am OK having the new experience of being tossed around by the prevailing wind, like tumbleweed – aimless, rootless, hollow, up and down.
I have seen my hospital consultant today and 5 consultants later it has been agreed that the “leprosy” is indeed a reaction to pertuzumab, the wonder drug. Someone else has had the same symptoms as me…(I wonder how they described them to the medical community). On the evidence available it has been decided that a year of treatment with this drug may be enough, so just 2 more rounds to go and then I may be able to get back into my own skin! Not the end of the drug treatment full stop as I will continue with Herceptin every 3 weeks indefinitely BUT I can have that done at home, so with the end of leprosy in sight and a reduction in hospital visits that sounds like a good news day….
I am now on the shelf with April (the wig) and my prosthesis. My husband has left me today for “a different life”… Moved out lock, stock and cases of wine!
Hard to know what to say. This wasn’t intended to be a blog about me – rather me and my experience of my illness. However it is impossible not to share the fact that my mainstay has shipped out and I am cowering in the wreckage that is my life, feeling feral.
I am often described as being strong but I’m not sure how strong I really am…or, want to be. What I do want is to dig a hole…(except, maybe I am already in it)…and howl, lick my wounds and stay under everyone’s radar for a while.
Please, please don’t phone me...I need to find my own way to cope and I can’t explain to others something I don’t understand myself.
Meantime, medical “stuff” does not pause and it’s back to the oncologist tomorrow. Maybe I will discover that it’s “normal” for women to be left when facing a diagnosis like mine…I’ve had just about my fill of this journey now…Why me? Why not me?
Just how bad can life possibly get?
Diseased arm improving daily BUT what do you know other arm now ramping up to take over on the leprous stakes…Really?
I have not fallen into the “Why me?” trap until now, thinking “Why not me?” but suddenly my attitude has changed and the “why me?” is dominating my thoughts…Don’t I get a break? cancer…diabetes…maculopathy….spondylolisthesis…one boob…”getting fit” AND leprosy….
Next week I go back to see oncology consultant for the first time since surgery…given that my scans were OK I am hoping this appointment will be a walk in the park. Meantime I continue to struggle with the impossibilities of the gym – no part of me could be described as anything resembling “fine-honed” – which is a daily despair. Maybe I will be the fit one on the leper colony – I guess everything is relative….
Woken up today and I wouldn’t go so far as to say my arm is better BUT it is showing definite signs of improvement, still itchy but but no longer seeping pustules. Maybe it’s not leprosy after all….This must be good news…but what is it down to? Sitting in the warm sunshine or the extra antibiotics?
Further good news in that I have heard my latest scans are clear, showing nothing new and no spread…
So I am now waiting for the 3rd piece of good news…a win on premium bonds? a slim lithe body without any effort? England winning the World Cup? Or is it only bad stuff that comes in threes?
In many ways I feel better BUT it seems that head/brain and body are not working on the same timeline. I had a lovely day out on Friday and then went along to support Cakes & Prosecco 107daysofaction.wordpress.com (which was being held at the office). I was home by 6pm but have spent the entire weekend unable to do anything bar sleeping and lounging about. How can I still feel THIS tired from doing so little?
It is back to the gym tomorrow and although I feel like I am making small progress I still have to “rest” after the near death experiences in there. Surely by now, I ought to have more stamina? Surely?
On Tuesday I am back at the hospital for my regular cancer treatment…and meantime I carry on with double dose antibiotics which are making no difference, twice over, to my leprous arm. Is this what life now is?
On a positive note, I have finally found a wallchart for the football World Cup, which has large enough print for me to see and fill in!
Amazing what can become “normal”. Today I have been for another set of CT scans, which I have 3 monthly. The staff now know me…from the receptionist “nice to see you again” to the technicians who now know I come wearing clothes with no metal bits, so I can go in the machine dressed as I am (oven-ready?)…I no longer think it is strange to be injected with the dye that gives the contrast “pictures” and I don’t even think that the feeling, when the dye goes in, is odd. (This is a sense of having an internal heater suddenly blasting out at its highest setting, a metallic taste in my mouth and having the impression that I have wet myself). Nothing strange about any of this for me…this is part of the “new” normal.
The results of course…that’s another matter…but 3 weeks until I get those, so plenty of time to get back to fretting about dermatology.
My skin is a puzzle to all. The consultants are split between what they think. It is unlikely to be a drug reaction as these tend to present in several areas of the body, not just one. However…whether a new type of drug could provoke a different type of reaction is remaining on the list of food for thought.
“Have the antibiotics made the problem any better?” I was asked
“No..no difference whatsoever”
“Well, maybe try doubling the dose 2 weeks after you started” was the response
Hmmm…will this make them “not work” at double speed?