This is my first time writing here and I feel like a bit screaming into the void.
Got diagnosed with a 38mm tumour on my right breast in March,ER+ and officially grade 3 after the mastectomy pathology testing. I ended up needing chemotherapy but luckily the margins were clear and no nodes were involved. Chemotherapy was supposed to be preventative and it was really bad to the point I had to stop after 6 cycles and missing the last two because my body wasn’t recovering.
I am on tamoxifen for 10 years now and I started about 2 weeks ago. Initially I thought I did not have any side effects but then the mood swings, joint pain and brain fog started. Then tonight I felt a horrible head pressure and chest pain and my BP was 144/96, checked again and was 166/99!! Usually mine is always perfect even when I was through chemotherapy.
I tried to call 999, which told me to call 111 and never got to speak to someone after almost 1 hour on waiting.
I have been discharged from oncology and I’m back to my GP. I cannot call the Cancer Care line anymore as well. I feel alone dealing with the aftermath of what cancer and chemotherapy left to my body and mind, and tamoxifen it’s just an extra weight on my shoulder. I feel like I survived cancer for then been taken out by the treatment I’m taking to avoid a recurrance. I am only 33 and dealing with this and none of the professionals I’ve been spoken to wanted to sit down with me for more than 10 minutes to tell me what is going on and what I need to know. Just a leaflet after another. I’m very scared and also feel guilty even just to write this down.
I’m just wondering if anyone else felt the same and can give me some advice on how to go through this, because at the moment I feel hopeless
Dear @smarti56, I am sorry to hear you are so worried and distressed. may I suggest you call the Macmillan helpline today which is open 8am-8pm 7 days a week. You will be able to speak to a nurse and they will give you all the time you need. tel 0800 808 0000.
Then next week make appointment with your GP for a Cancer Care Review. Let us know how you get on. love from Tulip x
Hi @smarti56 I’m so sorry that you are in such a bad place and not sure where to turn. You are not alone in feeling lost and maybe even abandoned when active treatment finishes, many people on the forum have expressed the same feeling. Oncology departments are very quick to discharge us back to our GPs once active treatment has finished and, other than our annual mammograms and repeat prescriptions for endocrine suppressors, there’s not much contact. That happened to me two years ago but I was told at the time that I could call the nurse specialist at the hospital any time in the future if I had issues or suspected spread so I’m surprised that this has been denied to you.
Alas services like NHS 111 are often overwhelmed over the Christmas period, just at the time they may be understaffed. If you are very concerned about your blood pressure, is there anyone who can take you to your local A&E to get yourself checked over? Could the rise in blood pressure be caused by extreme anxiety?
You’ve been through a lot at such a young age and it will take time to process everything but there are people who can help. I recommend a call to the BCN nurses on 0808 800 6000 who will be on call from 9am on Monday and who will give you time to talk through your concerns. I guarantee that you will feel better from having talked to them. They may recommend the Someone Like Me contact programme which would give you someone who has been where you are now to talk to. You can find out more about it here ](Someone Like Me | Breast Cancer Now) Also extremely valuable is the Moving Forward course which you can find out more about here.(Moving Forward | Breast Cancer Now)
Things will get better but it takes time. At the very least, keep posting here as you are among friends.
Sorry you’re having such a bad time, I’ve kind of been in the “lost” position before but not for cancer. You feel as thou you have been “shelved” in a dark room.
I had a seizure two years ago, had all the tests. Basically told get on with it unless it happens again. 15 months later, just as my confidence was returning had a second seizure. Contacted hospital, no response. Got a call from GP several weeks later, to say I had medication to collect. No appointment. The hospital letter, turned up another 4 weeks later to say it’s now classed as Epilepsy and to take the pills. Not hear anything since, no follow up. No checks with the medication or support.
I’ve just reapplied for my driving licence, and one of the questions was “when was your last appointment with the consultant”. Ha. I could have cried and probably will if it delays my application. At least having cancer treatment has distracted me from that problem, for the time being.
It was or has been a strange emotion. Part of me has been happy to get on with life, but on the other hand you want some comfort, and someone to tell you that things are going well. And in your case you are having concerns about your health and you want someone to check it out.
If you’re worried about your blood pressure, make an urgent appointment with your GP. You said yourself, you know what is right for your body and this is setting of alarm bells. The extra stress will only add to it.
I feel very strongly on your behalf, and I am shocked to read that you have been discharged ‘back to the GP’ when you only had the diagnosis last March at the age of 33? What specialism does a GP have to be keeping a check on you in such early days and at such a tender age? The ‘system’ advises people to be pro-active and self-check, and then throws people to the lions with minimal aftercare and I do not understand that at all.
I am in my late 60’s now and my steps into this world began in 2018, and in the following 5 - 6 years ( covid caused delays ) have had mammos, and follow-up phone call appointments, and real appointments post mammo appointments? I must have been lucky because I am reading too many horror stories on here. ( I live in London so possibly availability of hospitals/london transport figures in my experience ).
I don’t know what to suggest in practical terms, but I am so sorry for your lousy experience with all this. My best wishes for better days.
P.S. are you anywhere near to one of the highly recommended Maggies Centres?
