Herceptin No More?

Can’t believe I haven’t posted since August and that my last post was about Slimming World! That didn’t last! Stuck to it rigidly for a week, did not lose anything and decided that with everything else going on perhaps now wasn’t the right time for yet more stress. Through Sept/early Oct the following has happened:-

  1. Couldn’t have Herceptin because blood pressure too high (155/100)
  2. Following Monday had chest pain walking up a hill and felt unwell for hours.Rang ambulance but after two hours had not come and I was starting to feel a bit better so we cancelled it.
  3. Cancelled my rescheduled Herceptin – not going to have it until I speak to oncologist & find out what’s going on. Muga scan 58 but breathlessness bad & heart pounding.
  4. Since no Herceptin for a few weeks have felt better in terms of chest, still some breathlessness but some improvements and have been able to go into work every day bar one which I spent working from home day
  5. I think this might be the end of the road for me & Herceptin (I’ve had 10 of the 18) ¬†but we’ll see what they say on Monday.
  6. Oh and had bone scan – all clear. Yay ūüôā

Slimming World

So today I restarted the Slimming World diet and I’m thinking of joining one of the local clubs on Wednesday. I’ve put on about 2 stone all told since I started treatment, bucking the cancer makes you lose weight trend. Some of it is poor eating and lack of exercise and some the medication itself – chemo, steroids, herceptin. Anyway I’ve had enough but I don’t want to do anything faddy. I know I need to eat properly to support my recovery. I did try a bit of fasting this week but don’t think that’s sustainable for me. Also tried calorie counting but too much weighing and counting. So back to Slimming World. I’ve had some success on the plan in the past but never stuck with it. This time it has to be different.

So far today I’ve had:-

1 slice of toast with teaspoon jam (0.5 syns);

beans, egg, tomato (free),

2 X satsumas (free)

1 chicken & sweetcorn noodle mugshot (1 syn).

I will probably have some rice, chicken & veg for tea (all free) & then use up 5 syns on a 2 finger kitkat. Not bad. Will be better when I get more Slimming World friendly food in but it’s a start. Will post my food diary and weight losses on here – makes a change from breast cancer treatment updates! Oh and exercise. Feeling a bit tired today after a busy day at the Insomnia63 gaming festival yesterday but tomorrow will try to get to the gym to get back on track with the ¬†Couch 2 5K programme.

I’m trying to feel positive and I’m trying to get back some control of my body. I will get there.

Hot and Bothered

So despite being all zen like in my last post I’ve not reached enlightenment and I now find myself back to my stressed out, anxious, sad sack self.

In a nutshell still struggling with Herceptin caused fatigue. Also have some breast lymphodema & now cellulitis, on/off fever & chills, and aching hands, feet and ribs. I walk around the place all bent and stiff. ¬†I had to work from home all last week because I felt so rotten. I have 7 more Herceptins left. I don’t finish until end of Jan.

Also I still have concerns about my left breast. It is pinker and warmer than the other. ¬†They are saying it’s cellulitis but who knows. I have some pains now and again in my collarbone & what feels like a swollen lymph node just below my armpit so I fear something else. I guess I should speak to the oncologist when I see him in October.

The worse thing though is the guilt I feel about work. When I work from home I do work from home, I work very hard. Occupational Health have said I should ¬†mostly work from home and only go into the office for short periods of time. But every time I say I have to work from home I feel guilty, I feel like they’re all fed up with me, I feel like I’d be better off on the sick.

Oh and the hot & bothered malarky – I think that’s the menopause brought on by chemo. It’s great isn’t it?

I sound so moany I know. I am so happy to be alive but I hate what’s become of my body. We had a short caravan holiday week before last and I walked more than I have in months and even swam a bit, but boy did I pay the price for all that. Have been so unwell since. I want to do more to get stronger but it is a fine balancing act.

It will all pass I hope. It’s just the Herceptin causing me to feel unwell I hope. Maybe it’s the menopause. I just want to get fit & strong again.

Maybe waking up and typing blog posts at 4 in the morning is not the best course of action either. And now I want some toast …!

Letting Go

I haven’t posted in over a month. I just couldn’t seem to do it during radiotherapy. Wow what a slog that was. 20 sessions – everyday for four weeks. I didn’t have to travel far and I wasn’t long in the chair, but going everyday, stressing about delays as I wanted to make sure we got home in time for my daughter, doing the 20 second breath hold, just feeling so exposed with arms up breasts exposed ¬†– it was ¬†exhausting and I am so glad it’s over.

I’ve also had 7 of my 18 Herceptins – so still a way to go there. I think the Herceptin side effects are getting easier though, perhaps my body is building up some sort of tolerance? I don’t feel as fluey or breathless (yesterday I was able to walk a fair old way down to the beach and back) so that’s definitely an improvement.

It’s not all plain sailing though. I have a lot of stiffness and pain in my hands and feet. The oncologist said it’s down to chemo damage and possibly early menopause (also chemo induced) and might get better or might go on for years! I also have a hard lump of what I’m hoping is scar tissue under my lumpectomy scar – ¬†I’m seeing the breast surgeon about this on Wednesday.

But … I am starting to feel better (at one stage I thought I’d never type those words again). Last week I went back into the office for a few hours ¬†and, although seeing people and talking to them was exhausting, it felt like I was returning to normal life. I was stressed about some work-related stuff (although shouldn’t have been) but this has now been sorted. And my hair is coming back (it’s come back curly which was always my secret wish!) Indeed so much has come back that I’ve been able to dye it. I used Naturtint from Holland and Barrett as it’s meant to be gentler on the hair and I’m very pleased with the result.

You will note that this is a more positive post than any I’ve written since finding out I had breast cancer. I hope that this can give some comfort and reassurance to anyone who has been reading this blog. Undoubtedly I’ve have some very ¬†dark days but things now seem brighter. Of course nothing is guaranteed. Who knows what will happen? We can only live one day at a time. But from now on I’m choosing to live each of my days in a ¬†happier frame of mind. I can’t control anything in life so worrying about such things is a waste of time and energy.

You see – I have thought a lot about the meaning of life since being ill. I have been particularly influenced by reading Anthony De Mello. I see that I have always sought ¬†things outside myself to make me happy and how, once I’ve achieved them, I’ve then sought not to lose them. This has caused constant worry and stress. ¬†Fear has always been such a driving force in my life – fear of not achieving something, fear of losing something, fear of causing offence, fear of confrontation, fear, fear, fear. But I now understand that nothing external to me (possessions, house, career, friends, family etc.), can ever bring ¬†true happiness and peace as it ¬†always come hand in hand with fear of loss which in turn causes stress and anxiety. ¬†Anything external = Fear. True happiness and peace can only come from realising that no matter what¬† we all have within us all we need to be happy. ¬†We are enough.

It’s hard to think this way. I find my mind wandering off to worry about this and that. I love my husband and daughter and fret about them constantly. ¬†I worry about my job, the house etc. But from now on I’m going to try to intercept these worries, to gently bring myself back to the present moment and to remind myself that letting my mind spiral is not the way to happiness and peace. To attempt to control everything in life is to play a never-ending exhausting game of whack-a-mole. Much better to return to the present and breathe.

I finally realise that I have all I need. I always did. Everything that is happening is happening perfectly. I don’t need to control things. I need to let go.

This is such a strange moment in my life. I feel like I’m on the cusp of something. It might even be peace.

Still Here

I realise I’ve not posted for awhile. I’m on a phased return to work at the moment (working from home) and so not had much time for writing. It’s good to be back catching up with work but there have been significant changes with my job which basically means I’m having to apply for another role better suited to my skillset and this has caused me no end of stress. I’m waiting to hear if I’ve got through the sift and if so when the interview will be and hoping it can all be fitted in around my treatment and that I’m well enough to do it etc.

I could do without all this right now as:-

(a)I’m still struggling with chest pain (although chest Xray & CT scan all fine)

(b)I’m still struggling with Herceptin side effects (or maybe it’s early menopause?) – tiredness, flushes, aches, high temperature etc.

(c)I started radiotherapy yesterday.¬†I’m finding the whole radiotherapy thing particularly ¬†difficult. The way you have to lie on the bed, arms in straps, everything exposed, then they write all over you and instruct you to hold your breath until you feel like you’ll explode. As with the stereotactic biopsy, it feels as if my body is no longer my own and is instead most definitely public property. ¬†It belongs to them. Nothing is private. And I know it’s to fight the cancer, save my life, give me a future etc. I know the why, but I hate the how. ¬†It could be far far worse in so many different ways but everytime I’m in there I just want to cry.

Life still feels hard. I wish the work side of things could be sorted so that I could at least stop stressing about that. Again I know I’ve got lots to be grateful for there too but the uncertainty is unsettling. On a positive note I’ve started a Couch to 5K running program at the gym (only done two sessions so far and they were mostly walks not runs but at least I’ve started). I’m hoping exercise will help me get stronger. Also hair is coming back – it’s very short and grey but it is hair. Less positively once again head lice has been reported in my daughter’s school. That is most definitely the last thing I need ….

Pump It Up

It’s been a funny couple of weeks. I had my 4th herceptin without chemo and thought all would be fine but still had heart rate issues that first week and then chest pain and breathlessness for the following two weeks. Saw Oncologist and he arranged for blood tests (all fine) and a chest x-ray (mostly fine but heart slightly enlarged). Then had Muga test – heart pumping strength down from 57 (starting strength before chemo/herceptin) to 56 – so not much of a reduction. Oncologist happy for herceptin to restart but is arranging a CT scan because of ongoing pain and breathlessness. I’m waiting for health team to ring me and organise “herceptin at home” but may have to chase on Monday which already has me feeling anxious on Saturday (such seems to be the way of things with me right now – I’m stressed and anxious about every little thing and prone to bursting into tears at the sight of dust or dishes that need washing).

In other news when getting undressed for the shower spotted left breast in mirror and thought I could see some slight puckering under left nipple. Looked closer and thought I could see black dots (pitting) and different than on right breast. Got husband to have a look and he could see the same thing. We wondered if it was hair follicles springing back to life but why only one breast? I don’t know. I have had a little bit of pain in left breast too – stabbing pain – but thought that was hormonal. There’s also a tender spot slightly above the nipple and below where the tumor was. Anyway ¬†it’s ¬†enough to get me a bit anxious so I rang breast care nurse and I’m ¬†seeing my consultant next week.

Still no date for radiotherapy. In the meantime I’m returning to work on Monday – phased return working from home initially to see how I get on. Will be good to get some normality back but obviously a little concerned about some of the above. Hopefully it’s all nothing but whatever happens I’ll just have to deal with it, one thing at a time.

Chemo Cycle 3: No More

This is going to be a super short post as I don’t feel well but I don’t want to not give an update.

Basically third cycle of chemo was a nightmare due to heart rate issues. Was very scary on the night of chemo. Heart rate 127, banging away in chest, would not calm down. Triage line useless – go to A&E or GP as might be having a heart attack. When I did see GP he said if they really thought it was a heart attack the advice should have been ring 999 for ambulance. When I saw Chemo nurse a few weeks later she expressed surprised they didn’t bring me in to see Oncologist. Anyway my GP was great thank goodness. Gave me an ECG. Suspicion of atrial fibrillation, referred to cardiology, now waiting for walking ECG in April and another MUGA scan before next Herceptin. Hopefully these tests will find out what’s going on.

Also during cycle 3 problems with bone marrow injections again. Only given five this time after crazy neutrophil spike the cycle before, but on day 6 extreme agony again. I was crying out in pain (not my usual stoic self lol).

Anyway it was all too much. Husband was emphatic I shouldn’t carry on with chemo and I completely agreed with him. So we told oncologist at next appointment ¬†(new oncologist – very smiley) that I wasn’t doing 4th and final chemo but would carry on with Herceptin. He was fine with it – seemed like par for the course. I think all this treatment is very “suck it and see”. Offered me hormone tablets even though my estrogen¬†score was 2 and progesterone score was 3 so also said unlikely to benefit me much. I asked about side effects. He told me. ¬†My jaw dropped. They were horrendous. ¬†Told him no thanks, just give me Herceptin & Radiotherapy please.

Now day 4 after 4th Herceptin and again have problems with heart rate. Last night at daughter’s choir competition I honestly thought I was going to have a heart attack. I was trying to be calm but I was scared. I’ve had palpitations for years and always thought there might be some underlying heart issue but nothing has turned up on any ECG apart from the last one and even that might just be ECG background noise. I know rapid heart rate could be due to anaemia and I know my iron levels are often low so it could be that too. Anyway eventually heart calmed down and I survived ¬†to see daughter’s choir came 3rd out of 5 (if I had keeled over I might have won them the sympathy vote but I might also have traumatised a chapel full of children for a lifetime – wouldn’t want that on my conscience!).

Meeting line manager tomorrow for coffee. I wanted to talk about phased return to work but last two days have made me realise I’m not up to it yet. Also not yet had Radiotherapy. Getting tattoo next week and then need to wait 6-8 weeks before it starts. Will be having 20 sessions. I don’t want to be off all this time but equally I recognise I have to be up to work (even on a phased return) and right now I’m not. I have started walking daughter to school ( a 20 minute walk) but today wasn’t even up to that.

Bottom line- I need to know was going on with my heart. Will be such a shame if I had those 3 awful cycles of chemo just to end up dying of a heart attack…!