I know from posts I've read that some of you ladies have manage to get away. Well I had a night in the New Forest on Sunday and visited my sister and had a couple of nice walks. It was just like old times when I used to take myself off for mini and major trips. Now all that feels like a thing of the past but I badly need something to keep me from slipping into gloom!
I'd planned to visit my partner in the Scottish Isles when lockdown restrictions diminished but that's looking increasingly difficult. We had a lovely week together when he came down in May and his phone calls got me through a difficult year.
However after my last month's infection, I only got one month of ibrance. With having to be here for blood tests, oncology appt and to collect my ibrance, plus impending scans, and with my treatment delay I'm now out of synch with letrozole and my gp had declined my prescription request because it was too early, I'm finding the windows of opportunity in my diary are getting eroded.
I know it's a minor thing compared with many of your worries, but how do any of you manage? I feel that I've had my wings clipped big time as I used to travel the world.
The photo is me at Exbury gardens on my microtrip!
In need of hugs,
Carolyn
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Beryl71
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I have the same problem, I miss my daughters a lot but they are so far away and as you said, travel is very difficult. My husband and I used to visit one daughter in Singapore every 2 months and our 2 daughters in Scotland twice a year but we haven’t been able to travel since Feb 2020. I’m just glad that my husband is with me so I don’t feel too lonely. We just rely on Zoom or FaceTime to keep up to date with how they are doing. Should be freedom day on 19 July for the UK so maybe you can travel very soon. Hugs!
Sorry about you missing your family. I don't have children and I live alone, although I do have lovely friends. I just get a bit low about it sometimes. Especially not being able to plan til the last minute. I feel that my treatment cycle has me trapped. X
Hi Beryl71. I am planning to visit my son and granddaughter in Austin Texas in September. My oncolgist is going to hold me treatment for 3 weeks so I don't have to worry about it. Maybe you could have a break for a week or so and just enjoy life! It's worth it. Sending you great big cuddles and prayers for your lonely hours.
That sounds like an option and if I am to go abroad then I think that's the best option. It also would save me low neutrophils and infection issue. Thanks for your kind thoughts. X
My husband and I are going camping today for three nights at a provincial park four hours north. Our adoptive family registered for a site (all the adults are double vaccinated) so all we have to do is stay away from others. We often drive to nearby parks now that summer is here.
My husband is keen to go on a longer trip (a week or so) to northern Ontario this coming month so we may be doing that as well. We went last fall, and had to stay in motels, but all precautions seemed to be in place so we were comfortable doing that & eating at rest stops. We now have an RV which will accommodate us nicely.
I'm telling you all this to suggest that there are ways to travel during Covid times. Perhaps, once you have your prescriptions, etc. worked out, you could rent a mini van??
Thanks for your ideas. I'm a bit cautious about driving too far yet as I haven't for a long time and I do get tired sometimes. I think maybe I'll have to learn to be spontaneous, whereas before I used to plan way ahead! Xx
I think that’s a bit mean declining your prescription as we need as much time as possible to enjoy time away but I’m glad you got away and enjoyed your recent break.I travel Most of each month at the moment and come back home for my injections and pick up pills and get a blood test only once a month. My oncology appts are telephone so I figured I can take these anywhere I get a signal. I have just returned from my daughters in London where I went to many National Trust houses etc and evening meals with my daughter and family. I’m back for 2 days to do my washing, cut the grass and off for a week to Center Parcs then back for injections week Monday and off to Scotland . I pick up the Ibrance 125 at same time as injections. Sometimes I’m tired but I’m enjoying every minute and decided on a whim to take Summer off work to have some fun.I have a scan August and telephone appt Sept so fingers Xd.I do agree it’s become a full time job coordinating the dates to go away but worth it.
Well done. My blood test, oncology phone appt and pill pick up are in same week . The deferred week threw me as it meant being tied for a second week. I'm now scared it will happen again. You carry on enjoying life. Carolynx
Thank you so much for your reply. I've written a letter to my gp, as it would be too difficult to explain to receptionist. I'm hoping that might get a change of attitude. Here if I have bloods done in a different hospital partnership area there are problems getting them back to oncologist. X
I’ve been worrying about similar things…appts, Meds, bone infusions blood checks…they used to be all nice and tidy but now the schedule is wonky as things get delayed or tweaked. Speak openly with your onc team to see if they can ease and adjust the timing of treatments. Our time is finite and while treatment protocols must be followed, it can’t restrict you from enjoying the time we have. Hugs
I know my GP can't log in to see my results as it's a different health area to the hospital. I'll have to ask the onc about that but then I know I have to collect the ibrance from the hospital or my local chemist, or get someone to collect and post it for me, but that would delay it as it's always last minute. The systems seem fragmented. Thanks for your support. X
Beryl I feel for you being so far away from your main-support-guy. That urge to get away can sometimes be stronger than the fatigue over the medical interruptions and the work planning. There can be such disappointment when we cannot make an event happen. I like your idea of a micro vacation and that even a micro vacation can help one deal with the disappointment and downess. I am hoping that you, along with all of us who struggle to get away , can find a maxi, mini, or even a micro get-away. Tonight I lit candles and sat on the porch with a soft summer rain falling beyond my reach. I ate a slice of blueberry-rhubarb pie with the friend who brought it. One hour and my spirit lifted. How I wish that each of us here will have a get- away sometime this week. .
Hi CarolynWhat a lovely photo, there are foxgloves in abundance this year.
Sorry your wings are clipped. Maybe you could book a trip to make you feel better? Most are easily cancelled now with no fee.
I am deemed stable by my Onc nurse and as such receive my tablets by a Dpd driver every 2 months. I still need to go to the hospital for an injection monthly and go for 3 monthly injection, but it cuts down the wait time. There are systems in place in the nhs. I find if you spit the dummy and mention that you feel like a second class citizen and with your condition things should not be stressful, they will work a bit to make things easier for you.
Hi Carolyn,I am so sorry your GP is not flexible. I have learnt that there is always a way, you just have to be persistent. Tell them you are going away regardless and need the extra months medication. You are allowed to pull the cancer card at the doctors reception - it usually gets results (along with the puppy eyes). I get mine in three-monthly batches. But even before that I was given an extra month of all my medication so I could visit my family in NZ in February last year. We got delayed returning due to Covid but due to my diagnosis we managed to get on one of the very few flights out a week after our flights were cancelled. But I digress!
You may want to try getting your oncologist to prescribe the meds as well which has worked for me occasionally.
I do agree that the system for getting drugs like Ibrance that are only administered at a hospital are woefully inadequate. Boots the chemist often does not have enough supply in which lead to a delay in starting treatment. It is a bugbear of mine which has never been addressed - I just get the 🤷🏻♀️ when I’ve questioned it in the past.
It is not unreasonable to have two months prescribes as a one-off so gently push back to you get the results you need. Failing that perhaps you could go for a shorter time - three weeks perhaps.
Well I've written a letter to the doctor laying out all the facts, and I've just reordered through the electronic system. I'm awaiting a reply and ready to do battle, fortified by everyone's comments. Thank you!
Do you not get stomach problems, too many green veg ( I grow a lot), give me stomach gripes. My spinach soup, I can only eat every few days. I tried one of those powdered concentrates once and couldn't keep out of the loo!X
Hello Carolyn. When I order prescriptions a little early due to holidays or whatever coming up I add a note in the message box. Or contact the surgery just to let them know why I am ordering early. I am sure they will help if they understand. I hope you manage to get a break. Sending hugs. ❤️
Dear Carolyn, I completely understand you. I've had instances with my Ibrance prescriptions when the neutrophils were not quite up to scratch and so instead of a week I had two to recover -- no problem in itself but the subsequent cycles and checks all had to be realigned. I feel superstitious about planning anything.
I hear you, Beryl! Feeling similarly and no new trips booked yet, after I cleaned and gleaned my overstuffed bookshelves, passed along a good portion of my yarn stash that I realized I was never actually going to use, I turned to the photos from past adventures! Voila! I found re-visiting these snaps of trips and "special" events of my 78 years was indeed a travel of a different kind, but truthfully very enjoyable. I hope you'll try this kind of travel...but keep 2 things close at hand...a box of tissues for tears and belly laughs and a trash bag for those pics nobody should ever ever see! Hope this helps.
That's a great idea and yes I've done a bit of that! I've used up all my fabric stash and done lots of sewing, embroidering, painting. Now some of those things I always wanted more time for have been done to death! My last holiday trip cost me a fortune, I traveled right across Canada on premier class train. I'm so glad I did that in Autumn 2019, before diagnosis and covid. My last trip was for my charity to Nicaragua in February 2020. I fear insurance and infection risks may prevent me returning, but I get daily messages and frequent photos. I send the money and my local Nicaraguan contact organises the work. He cried when I left last year, maybe he had intuition. But at least it's a legacy to give hope to people with more challenges than I have. And they have strong faith and pray for me all the time. I miss them a lot. X
I totally understand. This disease takes so much from us and all we want is the stuff we used to have - like the ability/opportunity to travel and explore. I know you hate having your wings clipped and I hope you can get things sorted out quickly so you can hit the road again. Lovely photo!
Well it’s a ride none of us wanted to take I now going on 7 years have learned when tests are good celebrate, and when tests have a glitch fight like hell . Live day to day and appreciate the small things xxoo
We feel your pain, in different degrees of intensity. I just "banked" our timeshare from 2021 t0 2022, hoping that I will feel more like traveling. We already have plans to fly to Pittsburgh this year, and I have to choose between getting flight insurance or risking having to cancel at the last moment because I'm not feeling well enough to travel. The airline will give me credit to fly within the coming year, and if I feel up to it, we could use the tickets to go to our timeshare...So many "ifs!"
Yep that's how it seems. Book last minute if poss or risk cancelling. I haven't investigated travel insurance, not thinking of anything where I might need that yet. Good luck. X
I have similar feelings….I just started Navalbine on Thurday and thought it was IV every 3 weeks, but it is in fact every week! So disappointed because there is so much I want to do….though as it turns out I can’t do it now because I’m so short of breath I can hardly get up the stairs….I think we’re both going through rough patches…..I hope they end soon!
So do I. I was doing really well through lockdown, on two monthly allocations of meds and felt good, but couldn't do much because of virus. Oh well blood test tomorrow, onc appt Tuesday and then maybe I can plan next couple of weeks!Good luck with your treatment. Carolyn x
Sister, and yesssss Warrior 😇 I am so happy you got time to visit with your (sister sibling). I do hope/ pray your Dr. will give you clearance for travel to visit with your beau 😀. Stay strong. Draw strength from the greatest times of your life. 🤗 GOD bless you I send you many virtual hugs. Sorry for the late response, I have been offline for a few days
We also use to travel the world & we are currently on a 4 night break on the Essex coast in Mersea Island. We are making the most of it but weather has been pretty disappointing to be honest.
I would love to plan a holiday overseas but feel with Covid & my cancer treatment this may not be wise.
I’m not sure what help or advice to give you to make you feel better. I guess we just need to try & be grateful for everyday & try our best to enjoy it …
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I now going on 7 years have learned when tests are good celebrate, and when tests have a glitch fight like hell . Live day to day and appreciate the small things xxoo
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