AWAKE.........

Hi Jackiewackie10 how are you getting on? I remember my hair matting and coming out in clumps. What I really remember is how painful my scalp was and so I shaved it all off and had instant relief. I was a bit freaked out about losing my hair but then once I’d shaved it off I got used to it very quickly. I was very surprised, I also bought a wig but never wore it, I just wore a beanie hat or scarf and then finally towards the end, just went bald and thought sod it.   

you’ve got this and we are all here for you to listen when it gets tough. Sending you a massive hug xxxx

Hi Mumofthree , 

really pleased to hear that things are going well for you. Although must be tough going to two different hospitals for treatment. Please try and relax when you can.

I worked throughout all of my initial treatment. I was nanny to 2 children and had to try and fit in the radiotherapy and chemo appointment around their school clubs and play dates with nursery friends. I didn’t have to work, I could have taken some time off. But at that point I needed to work as when diagnosed I promised myself that Cancer was NOT going to take my nannying career away from me…. Clearly eventually I failed.

I did well to get through it all until my possible, at that time, Secondaries were found. At which point EVERYTHING snowballed. The fatigue just became unbearable, I couldn’t stay awake, I was in pain, I wasn’t sleeping at night and I just felt that my life was one BIG mess and I just wanted my old life back! 

Truth is my body and mind just couldn’t take anymore. I hadn’t allowed myself to process anything. I had just gone from one appointment to the next and not given myself time to think about anything! Well eventually it all caught up with me! 

Now I’m not saying this will happen to you. But just wanted to say, please try and allow yourself time to relax. Both your body and your mind needs time to process what’s been happening to you. 
I’m glad you were able to see your colleague at her leaving do. But really hope that tomorrow you allow yourself some down time, feet up and relax! Radiotherapy might not seem like much, but it’s pretty rough on your body and by the end of your treatment fatigue can really catch up with you, if you aren’t careful!

Hope you don’t mind me commenting. Don’t want to sound like I’m telling you what you should be doing. Just wanted to offer a little friendly advice. Which you can feel free to ignore! 
Sending you a ((((((BIG HUG))))) and positive vibes for the rest of your treatment. Sal xxxx

Hi Sal. You are right I know. I said to my friend at work that I feel like I’ve approached the whole cancer diagnosis and treatment like a programme of work to complete. I’m IT director for a data company. But I have not addressed the mental impact at all, I don’t even feel like I know how to. It’s like I just keep going, head down, try not to think too much.

how did you manage to process things in end?

how has everyone else managed the mental impact as since I was told I have found it very difficult to talk about, I wouldn’t talk about it in the early weeks and days, I just couldn’t  and have found it much easier to open up here than in real life. Has anyone else had a similar experience or am I just weird? Wouldn’t be suprised  

Thanks for your advice Sal I really do appreciate your insight as I think you’ve nailed it.

xxxx

 moomy , Sorry to hear your daughter is feeling low! I’m sure Henry Pup is doing his best to lift her mood. Sadly, as we all know. Life is full of ups and downs. But I’m sure she’ll either work things out with her friend, or another someone special will come along when she least expects it! Sending her a ((((gentle hug)))) and of course a ((((BIG HUG)))) for her VERY Special Mum! 
I hope you are doing okay my lovely. Can’t remember when you said you were seeing your Oncologist for your next part of your treatment plan! But hope it goes well when you do! 
Have you got any plans to go away in Goldie Van, anytime soon? Bet you’d love a break away from all this…. Me too

Had another blood test and ECG today. Appointment with Oncologist tomorrow and if all okay, next Fulvestrant injections on Friday and will collect next lot of Ribociclib tablets!! 
Must admit it’s been a rough week. Mouth has been sore and full of ulcers! Just as I think they are going another 2 appear, then a few more! So eating has been tough. Have one remaining ulcer which doesn’t seem to want to go away. However as this is my week off Ribociclib I am hoping all the ulcers will go and I am REALLY hoping that this was a one off and next cycle might be different….. but we shall see.

Although other than that and the metallic taste. I’ve been pretty much okay. A little more pain in Sternum and more acid reflux. But that’s about it. Oh and stomach cramps on and off! But going by the long list of possible side effects that they put on the list I’d say this is bearable! Obviously if I could stop the ulcers then that would be better. But it’s early days and so long as it does what it needs to do then I shall keep putting one foot in front of the other and just get through each day! 
I do have the option to reduce the dose, but I’m worried that if I do that it may not work so well.

Anyway I think I should grab some fairy dust and head to bed! Sending much love to all the Fruit Loops. Sal xxxxx

Mumofthree I basically hit breaking point! At which point I started seeing a counsellor at the Force Centre attached to the hospital I now go too.
I had never really been into this sort of help. I would rather just sort things out for myself. However this was something that I needed help making sense of. The whole grieving process, grieving for the life I left behind! It really is like a huge loss and accepting that is really tough and not something that you have to do all in one go. You do it however you want to and in whatever way feels right for you! 
Allow yourself however you need to feel. Don’t feel you have to be ‘strong’ and ‘positive’ all the time. Believe me the Cancer doesn’t care if you finally admit that this is really crap and you just need to have a bloody good cry, or a scream or shout! 
Allowing all these emotions out, at a time that feels right for you, will lift a weight off your chest and allow you to breathe again!…… you’ll know what I mean when it happens for you! 

Always here to listen Hun. As I know all the Fruit Loops are. Hope you can get some sleep Hun! As I will too, hopefully. 
Night night Hun, Sleep tight. Sal xxxx

Hi Mumofthree , the OT session was a group run by our local medical centre for their cancer patients, so very generalised and many were men with prostate cancer. One other lady who really was through her treatment but suffering more from anxiety/depression. So not that much help. I’ve also got a ‘Bosom Pals’ breast cancer group which I still have to find the time to meet, sounds a bit more fun. They provided a wee ‘goody bag’ from all sorts of donated items from local companies for every breast cancer patient locally who had surgery, such a lovely gesture. They have two meetings a month and I still haven’t managed to get to one, but must do so soon. 

The museum? (Long post coming, get a drink and some time to be able to read!!!)

 It’s on the Bletchley Park campus, the National Museum of Computing, all used to be one site but got separated a few years back. Bletchley Park is where a good few thousand people worked in the Second World War to break enemy codes (Enigma and later, Colossus) to try and outsmart the Axis powers (Germany and her allies). The Bombe machines (by end of WW2 there were over 200, most in outstations) were a development from the Polish idea of using mechanical means to shorten the getting of Enigma settings (which were enormous).

Alan Turing and Gordon Welchman worked with an engineering company’s design engineer, Harold Keen, to develop that Polish idea and manufacture the Bombe machines. At the end of the war they were mostly dismantled, a few survived for a short while as GCHQ were still monitoring Enigma messages (all were sent by Morse code over radio networks) 

in 1995 a group of enthusiastic electrical and mechanical engineers got together at Bletchley and decided to try and build a working replica, it took a total of 12 years but I think they were astonished when it actually worked. Not too long after that, hubs and I retired and decided to volunteer there, learn to become guides around the Park and volunteered to demonstrate in some of the exhibits that were then there. The Bombe team asked for more people to train to demonstrate the Bombe, we did and have stayed ever since. Hubs was the trainer of all our demo team, and was himself a design engineer and really understood much of the machine. I’ve just had to learn but I do enjoy it. Normally I do Saturdays demonstrating but also go in on Mondays as that’s usually a ‘closed’ day when engineering can be done, maintenance and planning for future works, hence Typex. 

I told you it was a long post! but I do love telling that story of the genius minds and clever people who helped shorten the war by (it’s acknowledged now) a good 2 years. 

Hugs xxx

 Mumofthree , please (as dear LondonLass say) allow yourself time to process what’s happened to you and to allow time to rest, rads will catch up with you in week 3 whether you like it or not! I was a bit unlucky and was tired in week 1 from my Covid infection which was still positive, but lucky as once treatment was done and I was home, I could mostly relax and have a nap. I think my journey was tiring too, so glad I had transport as it was 46 miles door to door on mostly single carriageway roads.

mentally you need to view the change to your normal self as a ‘happening’ which will change the way you regard your body; it’s let you down a bit and you will need to process that and work through to realise there’s now a difference and a new ’norm’ and a new you who will emerge, more aware, more vigilant (in case of new problems) but more able to live in and enjoy every moment of every day (even if those moments aren’t wonderful!) 

Hope that’s helped a bit?

hugs xxx

 LondonLass , I see Onco tomorrow, son is taking me again (daughter very frustrated as she’s not able to be there too!) and has been primed to ask questions! 

So sorry the Ribociclib is giving you ulcers and hope your body learns to prevent them in future courses. That metallic taste is the pits too, I guess it will be similar in Abemociclib, which is what my Onco will be suggesting? 

I’ve also got the prosthesis appointment tomorrow too, hope to get a swim one as well as a normal one. Also want to speak to BCN as the oedema in my hand (thumb) is still there and a bit variable, I want advice on managing it. 

Family is off to Shropshire this weekend in camper vans, were hoping for more friends but I think most have dropped out. So I will have a bit of a break in Goldie-van.

I’ve booked a solo 5 nights away near the North Sea coast, though, Cromer, so will enjoy some me-time in my van, walking, exploring (maybe a bit of sea-dipping?) and also reading  which I’ve found helps comfort me with being a widow now. 

hugs 

hiya, no more hair mattting since Sunday, not going to wash it for a while. Each time I comb it there are lots of dead hair thou which is been told is ok. I have a short bob which still looks ok but slighlty thinner on top but can get away with it. I have purchased a wig just in case and have did buy a scarf cap thinghy which I am now started to sleep in as fed up of hoovering the bed with all  the loose hairs!!!!   xx 

Good morning....I'm sure you're bothLondonLass and moomy ....using a non alcohol based mouth wash two or three times a day and more if mouth tingles but just in case it has got missed second time around....I was advised to use it from the beginning of chemo using it for months after treatment finished. You know I reacted very badly to chemo( which has changed drastically in 9 years) but I followed the mouth wash instructions from Day 1 and I never got an ulcer. It may have been a coincidence especially if you're already using it but new comers might like the suggestion as it's  worth a try.

 Mumofthree .....take care. Fatigue hit me six weeks after radiotherapy  finished. I had been doing too much thinking all was over and gone to Italy for a month's  holiday. Disaster.....the fatigue told me to 'stop and listen ' to what my body still needed. ....rest!..... Only once we changed our daily routine and holiday plans to allow for plenty of rest did we cope with the remainder of the holiday and the weeks back at home afterwards. 

I am still keeping up reading your posts but have limited time at present to reply.

Take care all. Know I am thinking of you...