Not sure if this will help anyone, I hope so, or it is just me waffling on, but we found other peoples postings very helpful and supportive during the run up to chemotherapy, so I thought I would put our story down.
The story so far………………
My partner, Karen, was diagnosed with breast cancer in March at Whipps Cross Hospital, the lead up to this is by far the most difficult time we have faced with the wait for the results, you do feel totally on your own and of course you always fear the worst.
After being told she has breast cancer there then follows what seems to be endless tests to find out the extent of the cancer in the breast and if it has spread anywhere else in the body. Again it is that feeling of not knowing and being on your own that is the biggest problem to cope with.
Luckily the results where good and the consultant at the hospital was fantastic and explained what was to happen next, unfortunately, it did involve a full mastectomy which was scheduled for the following week at Whipps.
Our feelings at this point where very weird, while the news was obviously not as bad as they could have been there was still a major operation to go through, but we felt quite up about it and the consultant had been very positive, and at least the waiting was over!!
So to the operation, again the staff at the hospital were fantastic and kept our spirits up, and we did manage to have a good laugh on several occasions. The op went well and the healing process is moving along fine, although she does look a bit daft lying on the floor doing her exercises (to help the healing process – we are no keep fit fans believe me!) while Liverpool are playing on the telly (the shouts of encouragement from me are obviously aimed at Karen).
Now we are home and apart from taking it a bit easy all seem well, but now there is another waiting game as we wait the results of the pathology report.
Again the results are good as no lymph nodes were positive, and the conversation with the consultant switches to treatment and that word, chemotherapy, comes into being a reality rather than something that happens to other people.
After lots of discussion and a lot of use of the discussion forums on this site, Karen decided to opt to go on the TACT2 clinical trial, (there are several threads on here that go into the different possible treatments under the trial you might get assigned to, so I will not repeat them all, as I feel I’m going on too much already).
This is when we encountered our only real problems with the system. Due to the fact that everything that had happened so far had been at Whipps Cross and that the chemotherapy was to take place at St Barts, there was a slight breakdown in the communication between the two on Karen agreeing to go on the trial. Anyway, after a few weeks it was sorted and Karen got on the trial with a day to spare (limited to 8 weeks after the Op).
The first chemo day arrives, and the schedule Karen was put on was arm 2 (4 Epi every 2 weeks instead of 3 weeks and then 4 CMF). Again the staff in the Chemo ward at Barts were so good, but while you have read everything about the side effects, both common and rare, there is that feeling of going into the unknown.
First drip anti sickness followed by saline drip while the nurse injects the syringes of the bright red liquid (Epi) into the arm. Loads of anti sickness tablets to take away and the next thing we know we are back on the tube along with the rush hour traffic.
Home now, and nothing has happened!!! (apart from bright red pee). This is one thing we didn’t get, all this build up, all this worry and nothing. That was Thursday, Friday came, again nothing!, we did feel like we were sitting around waiting for something to happen. We didn’t have to wait much longer. Saturday arrives and by the afternoon the feeling of nausea arrived, this got worse on Sunday and Monday (Bank Holiday). By Tuesday Karen was really struggling with it and phone the GP to make an appointment to get more anti-sickness tabs. GP was fine and a prescription was written. Unfortunately, the tablets were so specialised that no chemist in the area had them and it would be a 2 day wait to get them in. Luckily at 4pm on the Tuesday the nausea disappeared and things began to look up.
There didn’t appear to be any other side effects at the moment, apart from one massive mood swing (I was half hour late back from the pub, so probably nothing to do with chemo at all). We had friends round and went out for lunch the following week, and a couple of glasses of wine were consumed.
Chemo day 2 arrived on the Thursday, so off we went, Karen had seen the nurse a couple of days before and they had increased the anti sickness tablets. Exactly the same as Chemo day 1 apart from the hair loss, it had started to come out in lumps, so on the Friday I shaved it down to a number 1, and much to Karen’s surprise it looks good and she has even been out the house without a scarf on a couple of occasions (commando I believe is the expression you regulars use). On a slightly depressing note the increase in anti-sickness tablets didn’t make a difference and from Saturday until, believe it or not, 4pm on the Tuesday the nausea was back.
Tiredness has kicked in more this time around, but Karen is still planning to go out this weekend for something to eat and to visit friends.
Sorry to have gone on so much, but I am really proud of Karen in the way she has dealt with everything that this has thrown at her, and although there have been a few tears along the way, (from both of us) we have laughed, and laughed and laughed when ever we could.
Don’t know if this helps anyone, but try and stay as positive as possible (not always easy) and don’t have too much of a go if your partner is a bit late back from the pub very occasionally.
Best wishes to all