My timeline started mid 2020 , I had my single mastectomy then all the treatments they could throw at me from the end of 2020 to spring 2021. They said they had to send me to a different hospital a little further afield for my reconstruction surgery. I met that team at the end of 2022 and now I feel like I am trapped in limbo waiting and waiting!! Each time my annual check up comes around it knocks me sick and I pray for the all clear. Each time I see a hospital letter I pray its my surgery but no. My headache has been the lack of communication with the hospital. They gave me a date that covered a big birthday for me and told me not to plan anything, so the family and I had to reschedule a holiday and social events and my husband has had to put a lot of job development on hold in case he gets the call I am going in. We have all been effected by the lack of being able to get word off the hospital what is going on. My local MP has been involved and the waiting list delay was sent to the local news station. After everything the country has been through for people diagnosed during covid would communication off our hospitals been helpful? I know for me it would help just a sort of check in to ask are you coping ok ? Advice on how to ensure you can find resources to look after your body and your mental health. My mental health has taken an epic beating I do not recognise myself at the moment I plod on for my kids but my god do I want to just be whole again and move on. I feel like I am in a postcode lottery there are parts of the country where they are whizzing through these ops but me I am under a part of the UK that isn't whizzing through them.
Hi Blue1878angel and I see it’s your first post so a very warm welcome to the Community but I am sorry to hear about the challenges you are dealing with.
There is certainly a postcode lottery when it comes to health trusts at the moment.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have or are walking the ‘exact same' cancer journey can help you a lot. (I have a completely different cancer).
Can I recommend that you consider joining and put up your own post in our dedicated…..
……. support group as this is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post]or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.
Here are some links/info to the Macmillan Buddy service webpage and a Link to refer (self or referring someone). The referral goes to a central team before being allocated to the local area
Macmillan have also teamed up with BUPA to offer up to 6 free counselling sessions for people struggling emotionally because they are living with cancer. Clicking on the link will give you more information about this.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
((hugs))
I have been on my 8 in a million rare Lymphoma journey for over 25 years now so I fully understand the challenges of navigating the NHS both in the good and not so good times…..
Having had treatments in different Health Boards one being 120mils/4hrs drive away from home…… and consultations in both Newcastle and in London……. it’s a hard slog, but keep pushing the system and do use the various connection points I have given you - talking with other in the exact same path can help a lot ((hugs))
