Feeling sorry for myself

Hi Moira (Three),

Try not to worry too much, you’re almost at the end & I know of a couple of people that have had the majority of their treatment radiotherapy only due to similar problems with the chemo & the treatment has still been successful. The capecitabine is a cell division inhibitor I think & therefore just holds everything stable while the radiotherapy zaps the tumour so especially as you’re nearing the end of your treatment I wouldn’t get overly concerned. Hope that eases your worries a little . 

Nicola 

Thank you Nicola, it does a bit! I'm so sore and the stoma is playing up too, that this was just the finale straw! That'll teach me not to get too complacent! I've pulled my big girl pants up and I'll cope, thank you again, the support from you all gets me through every hurdle!

Moira x

Hi Three the mainstay of this treatment is the radiotherapy. Also, although you have had to stop the Capecitabine, you have had the benefit of it for the majority of your treatment. Easy to say I know, but I don't think you need to overly concerned that this will make a difference to the outcome. Bev x

You will get there, as much as it feels sometimes that you can’t take anymore, once treatment has finished & you’re through the couple of weeks afterwards hopefully like me you’ll be amazed at how quickly you heal, my new skin formed really quickly & although sensitive there was no pain. Hopefully your stoma settles down straight away too. Keep checking off those appointments & you’ll be there before you know it. 

Nicola 

Thank you so much Nicola, you have no idea how much your words mean to me! There again, of course you do, you've been through it! I hope someone was as kind to you, as you've been to me!

Thank you,

Love Moira x

Does anyone know much about after treatment ends? What a stupid thing to ask, of course you do, I think what I really mean is HELP again please! It's now 4 weeks tomorrow since radiotherapy ended and, Nicola, you were so right, skin has healed wonderfully! I was told that I would get phone calls every 2 weeks and here we are, at the 4 week mark tomorrow and I haven't heard a thing! I'm ok so I'm not needing to speak to anyone really, I suppose I just want to be reassured that they haven't forgotten me! I don't even have a number where I can phone, apart from the one they give out for emergencies and it's certainly not that! I sound so needy, don't I? Has this happened to anyone else? I had my treatment at the wonderful Freeman Hospital in Newcastle!

Hope everyone is feeling good?

Love Moira. X  Three.

Oh wow Moira Three,

How did I not know before now that you were treated at the Freeman?? This is where I had my treatment too!! A truly fabulous hospital with incredible staff too. My advice would be give the hospital a ring & ask for your oncologists secretary. Hope you don’t mind me asking but who was your oncologist? I was under Dr Simmons, lovely man, but I know he’s worked from home a lot throughout these lockdowns & I had to chase up an appointment last week too, he’s squeezed me in on the end of his clinic on the 11th of this month.

Obviously I’m much further on than yourself but I’d not had a physical examination since the beginning of March 2020 & still need that reassurance. 

You don’t sound needy at all, we all need that reassurance that things are going in the right direction especially early stages out of treatment like yourself, hell I still need it now!! 

Nicola

Hi Three..Moira, I've been thinking about you and wondering how you are getting on. I wasn't promised a phone call but I did get a call back because I phoned the 24hr number when I was in a bit of a state over a side effect that was worrying me sick. I honestly felt bereft when my treatment finished and it's "bye, here's some meds, side effects will get worse, here's some phone numbers" !!! During treatment every day I was asked if I was ok, worried about anything, did I need anything and there was always someone to help and reassure. When treatment has finished and the horrific side effects build and build that's when I believe it was more important than ever to put those questions to me. Most of the time I just needed to know that everything was as expected or given advice. Thank goodness for this group it's been my lifeline. I'm just starting to feel like Marie again in my head but my body is still a bit behind and I have worries that I would love to talk over with the nurses as I could before. I've been struggling to breathe properly for weeks and only found out a couple of days ago via my Doctor calling me because I was going through inhaler repeat prescriptions like ham sam that my treatment had caused problems with my bronchial tract!! But I'm so glad you're feeling much better. Have you tried the dreaded dialator yet? Xxx Marie 

Aren't they lovely at The Freeman? My consultant is Dr Hashmi, who I've only met once but he both terrified me and reassured me at the same time, but I've never seen him since! I saw one of his team every week, Dr Vin and Dr Isobel and they were great! Dr Isobel is the one you said I'd get a call every 2 weeks and a scan in 3 months! I don't actually have any phone numbers as I say, only the emergency one, do I phone that? Did you get the fortnightly phone calls Nicola? I think I'm around about the same stage as Marie! I'm wanting the contact I had when I was going to the hospital every day, like a little child wanting her mammy! I feel so weak too, some days I feel great, try to get on with things but have to give up! Actually the dilators are something else I'm a bit confused about! It's after my first CT scan but is this after 6 weeks or 3 months? To much for a 71 year old to remember! It'll be a giggle anyway or I HOPE it will be! I'm either laughing or crying at the moment, Marie, I'm so with you, thank God we have this group, it's been my lifeline too! I hope you start to feel better soon Marie and thank you Nicola, from the bottom of my heart, you and everyone on here have been wonderful!

Love Moira x

Hi Moira (Three),

Sorry for the delay in replying, I’ve just got in from work. I would give the Freeman main switchboard a call & ask if you can speak with Mr Hashmi’s secretary, you can voice your concerns with her & ask if you’d be able to have a chat either with himself, Dr Vin or Dr Isobel. I do this if I need to speak to Dr Simmons. When I had my treatment (almost 3 years ago) I had all face to face appointments, pre-pandemic!, if I recall correctly I was seen the week after treatment finished then possibly a couple of weeks after that then at my 3 month scans I think! Regarding the dilators I didn’t use them until I wasn’t sore anymore, the lady parts were as sore as the butt by the end of treatment!

It’s also quite natural to feel like you’ve been left high & dry at the end of treatment, we’ve had those weeks with daily contact with our medical/radiation teams so that if there’s a worry it can immediately be addressed then nothing! Even though I was told to just call if I had any worries it still felt very scary & I really missed that daily reassurance. 

Marie (Mecca), I’m sorry to hear about your problems with your breathing, that must have been scary! I’m pleased you’re starting to feel a little more like your self again, try & keep your chin up there are better days ahead.

Nicola