Oh Gigi, this must have been terrifying. Thank goodness there’s no clot. I hope you are having a good rest this weekend with lots of tlc.
Thanks for this, Christine. I’m not saying it’s reassuring that you went through the same thing - horrible for both of us. Does make me feel less of a grumpy person, though. Letter confirming surgeon’s 6-month check (at 10 months) arrived today.
What was reassuring was to know that joint pain seems to be a side effect of what we’ve been through and that gives me hope that this is a side effect which will go. I feel as though I should have a sign saying ”Sorry, I’m a bit slow” stuck to the back of my head when I am going up or down stairs, one at a time like a toddler.
Herceptin side effects do not sound good. A friend recommended sachets of root ginger & turmeric for making a hot drink. It’s supposed to help reduce inflammation but even if it doesn’t, it tastes nice.
Hi Dorabel. I know exactly what you mean. I have had to chase everything. Last week i had an apoointment with my oncologist and was introdueced to the breast cancer nurse. I have not had one for the whole of my treatment and have relied on the macmillan helpline. She said she would ring on monday for a chat about my treatment but here we are on wednesday and still no call. I do still have contact with the surgeon and his team but he seems to be on his third PA this year and I am not getting answers to questions there either.
Gigi. Sounds like you are having a tough time. I am trying supplements for the Herceptin pains and was told turmeric is good. Haven't tried it yet. I find my leg muscles are very reluctant to work. Bending down or doing a stretch after a work out are nearly impossible and I feel like an old lady. I have had 12 of the 18 treatments, inculding the 4 during chemo, but it still seems a long way to go to the end of March. Should start the Letrozole next week as log as i don't have another period. New set of side effects i am sure.
Energy levels are still not brilliant but i guess i have the luxury of working around that. People think once the main treatment has finished that all goes back to normal. I am still a long way away from that. Hope the next two weeks aren't too exhausting and xmas will give you are rest.
Hi Gigi, good to hear how things are going for you. It sounds as though you are recovering, despite the exhaustion.
I’ve just discovered how a person can slip through the cracks of the system. Treatment ended a couple of months ago and then - nothing. I finally rang the breast care nurse line yesterday and explained that I didn’t have an assigned nurse but was worried that I had been abandoned (do I have to get stage 4 bone cancer before anyone checks?). As if by miracle, an appointment with the surgeon was arranged for this month. I was booked into an end-of-treatment clinic (who knew such a thing existed? no one told me). I was assured I would get an appointment for my yearly mammogram. What a lot of target boxes finally got ticked!
What concerns me is that I doubt I’m the only person to whom this has happened. Because I had no assigned nurse, it was no one’s job to look at my file. If I had the early stages of dementia or didn’t want to make a fuss, zilch would have changed.
It was great to swim again, It really highlighted to me how much bone and joint paint I am in. It felt so good to stretch out and not be in pain, I felt so light! I was advised to avoid swimming though until my skin healed (I risked it for a biscuit though - I could not resist the Jacuzi).
Sorry to hear about your skin Michelle and that I have not been on for a wee bit. I was never given gel just zerobase cream to pop on, so I do not think I am much help on that front. Though at the Beatson I was advised that they have nurses on hand for you to drop in and get them to check out your skin, was told no appointment was needed just to ask at the reception. I am hoping you had that support too? How are you getting on now?
A small update re the skin progression for your expectations really, my skin as well as peeling has become discoloured looks dirty rather than tanned. Can see quite a severe line where the old skin has peeled off and the slightly pinker skin was peeking through. The skin has stopped peeling but it is almost like a watermark of discoloured skin around. It is a little unsightly but I am assuming over time this will fade. Has anyone else had experience with this?
In other news......My period has arrived, aged 40 at diagnosis, last perod just after first FEC-T Chemo, last Chemo 19th July, started oral chemo Capecitabine on the 20th of November! I had been expecting a forced menopuase, as per the medical advice and been having all the hot flushes but there is no denying it, it has arrived. So good news for my bone health overall I guess. I do not think I will complain about not having a period again.
Sending you hugs and healing for your skin, x
Hoping the blisters and skin is beginning to recover for you now Michelle.
My skin has darkened and started peeling away with healthy new skin underneath so although it looks worse the pain is diminishing. though I am still not wearing a bra atm. I hope this will be you soon Michelle, x
I was kidnapped by my mum for a mini break and had lots of relaxation, some naps, a little walking and lots of eating out! It was just lovley, beginning to feel like I need to be more active again!
In other news, made a bhoona from scratch, reducing all of the onions and tomatoes to make a gravy. It which tasted really yummy and added in lots of additional veg to increase my veg count further. Felt just like a take away but as I only used some spray oil and then water to prevent it sticking to the pan feel like I am getting all the taste in a healthy way!!
Hope everything is going well for everyone on here, x
I’m so sorry, Michelle, that you are having a hard time with the effects of radiotherapy on your skin. Those blisters must be very painful. I hope the gel eventually works.
Hi Euby, hope the chemo has gone ok this week. Is your skin getting any better now?
Not a runner at, preference is walking, swimming and dancing! But going to start small with Yoga and Tai Chi and then build from there. Once my fittness improves I might think about running.
I agree, I think we just need to take the plunge and call ourselves cured in one respect.
Got the new drugs it is going to be a much easier regime than FEC-T, most things are though!
my Mum is whisking me away for a little treat so looking forward to that. Hope your SE have now peaked and are beginning to improve.
Ooo also Oncologist advised that she would be surprised if I did not still have bone and joint pain at this time so feel quite positive about that. Neuropathy can take up to 2 years to improve ....eek, but most likely patients start to see an improvement 3 - 6 months after!
I have enrolled in a Live Active initative we have locally to get more active. Also looking to start weight bearing excercise to help mitigate Osteoporosis onset. Onccologist advised that they will wait till 12 months after my chemo before considering me Menopausal and take things from there but that as I am realy focusing on healthier eating and excersise I am doing the most adventagous thing already. However she suggested I do take VIT D as a suppliment, so will do. I am not huge fan of suppliments but she advised this is the one we struggle to get from our diet the most so giving that a go.
Has anyone else received lifestyle guidence from their team at all?
Can you tell I am trying to increase my fruit and veg to 10 day too! Mixed suscess so far!
I have managed to avoid most processed meats, and probably reduced meat and chicken consumption to 3 times a week, but feel I have been processed carbing out rather than managing the whole veg instead.....keeping on with it though.
I have a bout of laringitus from nowhere currently - need to stop talking so much!. My skin has started to peel from the radiotherpy (underarms and also under breast - I had a spot of Psoris there which seemed to break down) but there is healthy skin underneath so it seems all good to me! The pain and tenderness is reducing already from the skin, so have my fingers crossed for you that it will be similar.
How are you finding things Michelle, how is your fatigue and are you finding that your skin reaction is still progressing? .
Oncology appointment was ok. Got my bloods done there and I start chemo on Monday hopefully. In the appointment I asked a few questions but did not learn anything more than I had already found out for myself. I had seen a post where someone had said they had only 1 in 10 cancer cells left alive so asked if there was any info like that on me. I alreadyknew I had a partial response and the measures for that and was advised pathology wise tumor inspection reveled that over 50% of the tumor was necortic but nothing more specic than that. I asked about chances of recurrance and was advised that they do not measure this as such, just the survivbility rate in 5 years time using the Predict model and as I had neo adjuvant treatement this data was not capturered. I had already found predict on my own so as long as measured my staging correclty I have an idea of the figures relating to that. It has brought into focus what I knew already that we are never really considered "cancer free" even "remission" is not deemed that. Might seem a bit doom and gloom however it was something I was wrangling with as OH kept saying remember you no longer have cancer (after the surgery) and I had niggle but no one has said that to me claearly. It is sometimes a challange to brace that idea. I am not pessimistic just being very literal. Logically I know I have had curative treatement and chances are good at least over 80% of 5 year surviability however we all feel and have worries and anxiety and feel this will be with us for quite some time.
Best thing about my oncollogy appointment was in the waiting room I met another lovely lady with her little baby who I had seen near the beginning of my cancer journey looking so well and with lots of hair. I found out she was also TN and is on the treatement I am due for. She had a parital response and asked for the treatement (as a nurse - she knew to ask). She explained the side effects were very minimal for her so that is great news for me, I did not realise but I think that had been weighing on me a great deal as I felt very upbeat and relieved. Trying not to worry about the fact that I was automatticaly offered the treatement that she had to ask for and what that means but going to focus on the positives instead.
I think I have been too much socliasing this week and should probably try and slow down a little but so determined to get my activity up.....been far too sedentary for far too long (including before the diagnosis) and really want to do my bit to fight and improve my chances.