Hi Jolamine, glad to hear you are getting along OK. What is causing your mobility issues, is it just general wear and tear? I find that I'm generally more achy now, especially  after I've been sitting for a long time  I get up and hobble along for a while. I bet the first time out of bed after surgery will be a challenge. The nurse at my pre op was lovely and is going to email the surgeons, to clarify about phesgo. Hopefully will have an answer before I go away on Thursday. Take care. Xx

Hi Pippin,

I didn't find the first time out of bed, following surgery, too bad at all. I do hope that you get an answer re the Phesgo injection before Thursday. You could then go away and enjoy your holiday, without worrying about the possibility of having to re-schedule, when you come home.

I had a horrible flare up of arthritis, when I was having hormone treatment. This resulted in 2 knee replacements, my arms, legs, neck and especially my back and hands becoming very swollen, nodular, stiff and sore. Unfortunately, this hasn't relented, since I stopped treatment and is gradually worsening. I now have to use a mobility scooter to maintain my independence, but I'm glad that I can still get around.

I am also having investigation for collapsing, when I get up after sitting for a while. This started in 2016, and we still don't know what the cause is. Initially, it was put down to my very high blood pressure. I was at the hospital again on Friday and spent 5 hours, being thoroughly investigated. The consultant now thinks that it might be caused by the concoction of medication I'm taking, but this will be difficult to change. I'm now waiting for a tilt test, to see if this shows anything up. I must confess that this has caused me to lose my confidence somewhat.

Jolamine xx

Hi Jolamine, sorry to hear that you are going through such a difficult time. It's upsetting that going through treatment to help one thing, then causes problems elsewhere in your body. I hope you soon get some answers after the investigations regarding you collapsing. Shocked that it started in 2016  and they still haven't got to the bottom of it. I have been getting joint pain in my hips recently, which could be the phesgo, although I didn't have it when I first started it. I suppose it could be a build up over time, or could just be age of course. I haven't mentioned it to anyone yet, as didn't want surgery delayed, if they wanted to investigate it. I will mention it after surgery, if it doesn't get any better. Hopefully, once you get some answers to what's causing your issues, they'll be able to sort things out for you and your confidence will return  xx

Hi Pippin,

It's always hard to predict whether or not any arthritic changes are due to a natural ageing process, or to the side-effects from medication. I have had several different opinions about my collapses, but no definitive answers as yet. As you said, it's been happening for a long time and we don't seem to be much further forward - I'm just keen to get an accurate diagnosis.

I am sorry to hear about your hip pain and hope that you get it investigated after your surgery. I had to have both of my knees replaced after my surgery too.

Jolamine xx

Morning everyone

Sorry for the radio silence.  Just catching up on all the news now. 

Pippin24  So glad you can get away for your holiday.  It's a pain you still have had any clarity around phesgo injections, hopefully someone will have a definitive answer for you soon.  In the meantime, have an amazing holiday!  I'm the same as you if I've been sitting for a while, I am very stiff when I first stand and a couple of really stiff steps before everything loosens up again.  Oddly it's only from sitting, I'm ok getting out of bed in the mornings. 

Greeny80 That's lovely you have family visiting from Canada.  But 3 weeks with in-laws? Yikes lol.  I trust you all get along well and you will enjoy taking them out and about.  Don't overdo it though, I think we forget just because chemo's finished we think we're back to normal, but I have found to my detriment that that is not the case lol.  Have an amazing time though. 

Jolamine  So sorry to hear you're in so much pain :(  Hope there are some answers for you and it can be managed in the future. 

NGS  So glad to hear the rash is clearing up with the antibiotics.  Sounds like you are having an amazing time in Norfolk.  I was there earlier this year and went to Hunstanton for the day.  Lovely beaches and we found a roof top cafe where we sat in the sun and just chewed the fat for a few hours.  

I'm off to Scarborough this weekend to see my friend.  She and I hope to plan/book a holiday for 2025 to replace the cancelled one earlier this year (thanks cancer!).  It will be a belated 60th for me, so we are planning to spoil ourselves and go somewhere really nice (and probably expensive lol).  This will be my first holiday since 2022!  Feeling quite desperate now for some warm sunshine and R&R. 

Monday's first "Moving Forward" session was good.  It was quite emotive, as we all had opportunities to talk through what we'd all been through and it's amazing the different treatment (I don't necessary mean drug-wise, just how they've been treated by the BC team and their oncologist etc) we've all had.  Listening to other people, I really feel like I won the lottery with the team who have been looking after me!  Anyway, the session was really good, we were given a journal to write notes in and a relaxation session at the end.  Along with plenty of opportunity to ask questions and the presenters pointed us in the direction of support and activity groups (though frustratingly for me, most of them are during the week, during the day while I'm working).  We did a little post it exercise to ask questions we can't get answers to anywhere else.  We are having a talk from a BCN next Monday who hopefully will be able to answer those questions for it.  We've also set up a little WhatsApp group to chat between and after sessions.  It was interesting to hear that we all felt so exhausted afterwards!  I went home and was in PJs by 4pm, fell asleep at 5pm, but woke up to feed the dog and me but was in bed at 8pm!   I'm glad I went though and am now looking forward to next week's session. 

If anyone is going on holiday and needs reasonably priced holiday insurance, they recommend a company who specialises in insurance for those living with/being treated for cancer.  It's called "Insurance With".  I don't have the web address, but I'm sure a google search will find it. 

I can't remember who asked (was it you Pippin24 ?) about Patients Know Best.  Did you manage to use the link I send and get yourself registered? 

Hope everyone is doing well.  We're half way through the week and still smashing this! 

Carol xx

Hi everyone, the saga continues regarding the phesgo. Pre op department phoned back yesterday after emailing everyone, to say not to have injection before surgery. However, pharmacy phoned today to ask how phesgo went at home, then went on to say oncology has said it's fine to have it the week before surgery. Have also had an issue with the phesgo injection at home. Hubby injected a bit lower on thigh, as suggested by nurse at last training session. However, I've been in pain all day in my leg and was really worried (panicked about dvt), especially as we are flying in the morning. Pharmacy got chemo unit to phone me and the chap that phoned me was very reassuring. He also assured me he would check out the issue of phego before surgery and get someone to text me. Told me not to worry and enjoy my holiday. 

Jolamine - I'm really not liking the aches and pains that come with getting old. I hope you don't have to wait too long to get a diagnosis. Xx

NGS - so pleased to hear you are now feeling more comfortable and will soon be able to enjoy a cuddle with your granddaughter. Hope your review with the consultant goes well. Xx

Carol - pleased to hear the moving forward session went well, sounds like amazing support.  I will certainly look into them at some point. I'm not sure what the patient's know best is, sorry but must have missed the link. Hope you have a lovely weekend in Scarborough with your friend. Have fun planning your belated 60th birthday holiday, you really should spoil yourself. Xx

Greeny80- I hope your oncology appointment went well. Did you get told when they will be remove your port and when your scans will be?  Enjoy your family time and I hope you continue to feel good. Xx

Well we're off to the airport in a few hours, can't wait to feel relaxed and chill out in the sunshine with a good book. Xx

Hi Pippin,

You're right, There's not much to promote this ageing lark!

I am so sorry to hear that you are still getting mixed messages re the Phesgo injections. I sincerely hope that the chap that you spoke to from the chemo unit, can get a definitive answer for you and that he will text you soon. The pain following today's injection doesn't sound helpful, just before you go away, but I'm glad to hear that you managed to get some reassurance about that, before you head off.

In the meantime, have a fabulous holiday and I look forward to hearing all about it when you get back.

Jolamine xx

Hi NGS,

I'm glad to hear that your rash has healed up with the antibiotics, but sorry to hear about the area that hasn't healed yet. I hope that all goes well with your review next week and that you can soon hold your granddaughter again. I am sorry to hear that you suffer with your arms, legs, hips and hands. 

Do you think that the Amalytrypteline is helping you at all? I took this to start with, but didn't get any relief with it. I now use Bu-Trans patches and Paracetamol for the pain, but sometimes I  feel that I might as well be taking Smarties.  It's good that you managed to borrow a mobility scooter for your holiday. I use one around town and it really is a godsend, as it helps me to hold on to my independence.

It must be great to feel excited about getting another caravan - one thing a cancer diagnosis does is, to make us really appreciate the pleasurable things in life. This should give you a great bolt hole to relax in and to make all those memories for yourself and your family.

I hope that the hair piece was still in place when you got back today!

Jolamine xx

Hi Carol,

What a pity that you had to delay your 60th birthday celebrations. I hope that between you, you and your friend, can find the ideal venue for next year. I'm glad to hear that you found the first of your "Moving Forward" course helpful. It really does help to listen to other people's journeys and you'll find that other courses and support groups will stem from this. I attended a pain management course, after my second surgery. After that finished, a number of the people who attended, formed our own support group. We met in each other's houses on a rota basis. You might be able to find other people who are working, who want to meet up at weekends?

It's good to hear that you have a talk from a BCN planned for next week. Hopefully, you'll get the answers to some of your questions then. You do find yourself really concentrating at these meetings, so it's not surprising that you felt so exhausted afterwards.

Here's hoping that you continue to find this course helpful - I'm sure that you will.

Jolamine xx