01-12-2018 12:28 PM
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
25-11-2018 07:15 PM
24-11-2018 07:42 AM
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
23-11-2018 12:18 PM
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?
22-11-2018 11:44 AM
19-11-2018 03:56 PM
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.
17-11-2018 04:26 PM
17-11-2018 09:06 AM
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?
17-11-2018 08:55 AM
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.
16-11-2018 05:58 AM
Yay on ringing the bell!
Congratulations on being finished this part of your journey Michelle.
2 easy quick additions for your 10 a day
1 glass of fresh juice (150ml)
2 tablespoons of raisins (add to breakfast ceral/porridge or desert)
Some other inspriation that may work for you (depends on your taste)
Hope there may be something new in this to inspire you,
14-11-2018 09:00 PM
14-11-2018 01:26 PM
Sorry that was so ridiculous bad. I was in a hurry, no glasses on and using my phone.
Should have read... The diet info came from the World Cancer Research Fund.
I am trying to see what i can and can't eat to make my diet more healthy. Not allowed vegetable oil or sunflower oil so i have invested in an olive oil spray and a coconut oil spray to see how that does. Not allowed margarine but i am allowed butter but not great big chunks. Need lots of fruit and veg. I was told 9 portions a day which should be 3 fruit and 6 veg and a total of 30 different ones in a week. Now that is a challenge...
14-11-2018 12:12 PM
13-11-2018 05:52 PM
13-11-2018 02:51 PM
Thank you for your kind thoughts will let you know how I get on.
Had a little look at May thread JaqB has particpated in the ROSCO Trial which is why the chemo was split into two sessions. I beleive the purpose of the trail is to try and find out if they can find any links between tumor types and response to the two types of chemo in case they only need to treat with one.
However noticed that another lady had TNBC and she received a different Chemo regime altogether from me. I beleive I may have been a little unlucky in timing as I beleive the NICE guidelines may have updated at some point through this year and I may be one of the last sets of patients with TNBC to receive FEC-T rather than a regime that includes the Capecitabine in the first place. It is one of the things I will be asking my lovely oncologist about tomorrow.
Yay for last Radiotherpy treatement *rings the bell* time to celebrate I think!
13-11-2018 12:44 PM